How are people with liver mets doing?
I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.
How are others doing and getting through this with a positive attitude?
Comments
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Springwatch....I was diagnosed back in May. I did experience pain on my right side..it kept me up some nights. My liver was swollen and had 3 spots on it plus there were lymph nodes lit up in my abdomen. I have been on taxotere and herceptin...was getting perjeta too until some heart issues convinced my onc to suspend it for now. The lymph nodes are no longer lit up...the spots are getting zapped by the taxotere. I do take a pain med twice a day. It helps, though I have been thinking of trying to cut it back and see if the pain would come back. It gives me a better quality of life for now. I hope you feel better soon. Have you ever needed pain meds for your bone mets? Wishing you pain free days.
judy
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Hi jaytee,
Thanks Jaytee for your feedback. I have been taking paracetamol and naproxen since I was originally diagnosed with bone and lung mets. I started to develop liver pain when I was on Xeloda which didn't work for me at all. Things have improved since I went on gem/carbo which is why I was surprised by the pain especially as about 12 hours earlier my blood test showed that my tumour markers were down. I am taking dexamethasone (steroid) in tablet form today and tomorrow, I got it in my IV yesterday. As it has an anti-inflammatory effect, I thought I wouldn't experience an increase in pain. Really trying to work out if it is related to the chemo or something else.
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springwatch - I get liver pain when the tumors are dying and also from the "dead" tumors that are left over from ablations. Given your falling TM's and improving liver function numbers, I bet the cancer in your liver is dying.
Prayers for all,
Penny
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How are you doing? I've just joined in - yes letrosole eventually failed me too but don't give up. Since I had Adramycin, taxol and cytoxin, the BIG 3, I was given gemzar without much reaction and now Arimidex daily and Faslodex shots monthly but they are expensive. My petscan last week was good. Lungs clear of plural effusions and liver tumors stable.
Prayers all will go well with you.
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Hello infolouise,
I am sorry you have joined the stage IV club , but glad you connected with us. liver mets can go without symptoms, till the end. Some have them and others don't. As for digestions problems , i had some before diagnosis which seemd more like colon and reflux but nothng else. With chemo now i do have some digestive issues. If you are taking hormones they do disrupt the digestive tract, you just need to watch for excessive symptoms or unusual ones and always inform your onc og any change. I do welcome you here, you will feel comfortable as all the ladies are helpful , loving and kind. I feel there was some neglect in deaing with your case whether medicare, insurance or other and it is a shame. But i do hope now you foundthe right doctor and the right medication, and i hope they will work for you.
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InfoLouise...I will drink another glass of pomegranate juice to your good PET scan! Welcome...sorry you had to come, but glad you found us
Woody...I totally understand the hubbub of being home for the holidays...but trying to understand someone else cleaning & doing the work...you are blessed, dear friend! And I should say...very deserving!
Judy...OMG...I'm married to the Gerber baby. Seriously, his college nickname...so I get the "young fella" thing. I always give people the, "I'm fighting cancer for the 3rd time, and chemo's really taking it outta me" speech. Sadly, it makes me feel better that they feel bad. Please forgive me, God.
Spring...I was a high school secretary...I know what you're talking about re: drama, however, not at 36. I'm just so sorry that this path is taking what you probably are incredibly good at~making sense of teenage woes~away from you. I also know the stress you endure, so I'm hoping the break helps you nurture yourself.
Spring...My mets were discovered when my liver was overrun w/tumors & I have no clue if I had liver pain. I don't know that I even knew where my liver was! But I remember the day she gave me the scan/markers results...then felt my liver & shook her head. Ugh...once txt started, they shrunk & I still felt nothing. However, now, when I'm stable, I do feel pain every now and then. I always lie down and try to feel edges (that's what the oncs call it). I never feel anything...but would I? I think it must mean there's shrinking going on. My onc says scar tissue shrinks. I always love seeing people say the liver rebuilds itself! Hoping, hoping!
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CT scan on Feb. 4. It was supposed to be Jan 22 but DH and I have a Bar Mitzvah that morning that I'm not willing to miss. I'm not putting my life on the sidelines for this disease. I doubt very much if it will make much difference (except for my own fears, which is a whole 'nother ball game).
Leah
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InfoLouise23 - Sorry you had to join us, but here's to a good scan. Thank You, Lord!
Leah S - I totally agree about not putting your life on the sidelines. I schedule many appointments, even treatments sometimes, around my life. Keep us posted on your scan.
Prayers for all,
Penny
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Leah, I am another one who tries to make my own plans a priority and fit in my treatment around them. It doesn't always work out but I feel I have more control when I at least try.
RonnieKay, If your liver is hard and rigid, It should be fairly easy to feel the edges of it. It sounds as if your treatment is working.
I have only a very small amount of pain in my liver after the really sharp pain I experienced a few nights ago. I slept well last night, a good 8 hrs. but I still feel exhausted today. Treatment and blood work on Thursday. My HB and neutrophils were pretty low last time so I am keeping my fingers crossed it will go ahead.
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Spring...thanks for the liver tips! So good so far. Do you not get neulasta w/your regimen? Hoping the numbers shoot back up & you can stay on track. I remember the first time my count was too low for navelbine...I cried while I had the perj/herc. That was the beginning of my neulasta affair. It never failed me. Will be thinking of you Thursday!
I'm glad you rescheduled your scan. A chance to celebrate with friends & family should definitely not be missed! Ps...ask everyone to pray for great scans
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Leah,
You are to schedule your treatment around your life 10 days will not make any difference plus this stupid disease should not dictate our lives. Enjoy your bar matizva and may you attend many more . I know you will be worried about your scans but i want to tell you mt TMs were rising weekly for the first month in my treatment now the last one i did it dropped by 10 points. So i hope yours do the same. I will pray for your scans to ease your mind.
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RonnieKay,
Are you still in Ca or you're back? I missed you , i hope you enjoyed your trip and took advantage of the sun to relaxe and do these walks of yours. I saw my Mo yesterday just before my session of herceptin/ perjeta, taxol he did a physical exam on me and since i told him iwa sfeeling some discimfort around the liver snd some dull pain , he told me he cannot feel the liver it is soft , it does not feel inflated or anthing, however , he thinks i have some gastro issues so he requesed a stool and urine tests and culture. And already started me on antbiotics of course plus the neupogen for the blood i get weekly three shots to keep my blood in line. I am doing fine so far on that level. Believe me i feel blessed also to have an in maid who does all the cleaning and irononing and specially when i am tired after a treatment. But here it is not as expensive as the US plus she is like part of the family. On the 22 nd , i will be heading back to lebanon with my son for my PEt on the 28 and then head back to saudi to start my fourth cycle of taxol and my fifth in herceptin cycle. I am praying a lot these days for all of us. Xoxoxoxo
Spring, i had carbo / gemzar and it was very tough on my blood both carbo and gemzar , so my protocol inculded neupogen ( like neulesta ) except it is not one shot it is five daily after the 8th day, with all this i still got one blood trasfusion for red blood cells and the last two sessions where reduced because of my blood platelets low counts. It is a tough combo, eat well, and rest a lot and keep monitoring your blood , any extreme fatigue or difficulty to breathe should be reported immediatly to your doctor. Good luck on this combo , i hope it gives you good results and does a good job on shrinking those tumors. You are in my prayers.
Penny, i am glad you are feeling well thanks be to God and i hope your next appointment with your Mo will give you more to be happy about. Hugs.
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I have not had neupogen but did have a blood transfusion when I was on taxol. My HB slowly went down during the course of my treatment with this chemo until my onc thought I could do with top up.
My blood tests last week were HB of 99, neutrophils of 2.3, WCC 4.6 and platelets 290. These seem to be the only results my team are concerned with before deciding to proceed with treatment. The HB is below normal and the neutrophils and WBC are in the lower regions of normal, After last weeks gem/carbo, I am worried that things will have slipped further and I will have my chemo postponed. I am certainly more tired than I was this time last week.
Woodylb, It's interesting to read about other people who are having liver pain/discomfort which can be attributed to something other than increase in liver mets. I would be interested to hear what the results were from your additional tests.
I have been thinking of getting someone in to help with the house work but have no experience of doing this and somehow it seems symbolic of not being able to cope well. On the other hand, there are days when I seem welded to the chair in front of the TV and cannot do more than go to the bathroom and get myself a drink.
Scanner unit phoned yesterday to book my next MRI. Hoping to see some improvements since the last one when Xeloda failed.
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Good morning, all. Happy to read everyone's posts this pretty, snowy morning in Southeastern New Jersey. I type this as I watch my 11-year-old daughter out front wait for the school bus. What's it like in your part of the world today?
:-) Penny
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4 below in Syracuse, New York! Cold!
Should add wind chill of 24 below!
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Hello All - My first time on this thread, but it's time. I've had cancer to liver for 2-1/2 years now. Started with Xeloda for a year, Afinitor for a year, and Taxol for 6 months. Starting Adriamyacin this Friday pending the Echo results yesterday. I've been getting good suggestions from this group for the past few weeks, even before my scans because I just knew even though I didn't have pain.
RedWolf, 15 degrees here in Central PA but going up to the high twenties - yay! And I love the picture you added. I am just too restless/fidgety for meditation, but my form of meditation is taking my dog to the local state park, down by the water where you don't hear a thing (especially when it's iced over) and really listening to me, if I explained that right...chemobrain has killed my language skills, lol.
Happy Hump Day everyone!
Laura
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Hi Penny.....here in Ohio we still have snow on the ground and it is very cold! Sure wish it would warm up a bit.....I have noticed if I go outside I get a bit short of breath....was only experiencing that when climbing stairs or over exerting myself before. I go next month to a new cardiologist since my old one closed his practice. Will have an echo done....hoping that the results won't be bad. My onc already suspended the perjeta...but I have still been able to get herceptin.
I am still really fatigued....had a treatment last week so spent quite a bit of time on the couch. Finally sleeping better. Food has been tasting awful, but made a dinner last night that wasn't bad..chicken curry...enough spices in it so it had some flavor. Problem was that neither I or dh put the leftovers in the fridge....it sat out all night! Rats! Was looking forward to some of those leftovers. What is tasting good to some of you out there these days? I get so obsessed over food....have been spending way too much time watching food network on tv. If my taste returned and I had the money....think I would just take off on a cross country trip and go to all those restaurants I have seen on the Diners, Drive-ins and Dives show!
Leah.....Will be praying for you to have good scans!
InfoLouise.....hello and welcome, glad to hear that the pleural effusions are gone and that the liver mets are stable.....hoping you get continuing good news.
Thinking of you all and praying you will have a good day today....rest well, eat well or as best you can
. Enjoy your families and friends....and this big old world around us! Love to all.judy
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Hi Laura.....welcome to the group. Know what you mean about the chemo brain messing with the language skills!
That sounds nice going to the state park with your dog. We just got our first puppy back in October. I am looking forward to being able to take him for walks in a park or at the bike path in town. Right now, I don't have enough energy and he has too much for me to attempt it alone! Hope all goes well with your new treatment on Friday. Will be thinking and praying for you!judy
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Welcome, Laura. I started "low dose, weekly (3 weeks on/1 off) Adriamycin in January. Xeloda didn't work at all for me; got nearly a year out of taxol; 2 infusions of doxil & a toxic reaction; now Adriamycin.
Hang in there & keep us posted on how you are doing.
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Spring,
My blood started to get bad after the third cycle on carbo/ gemzar . Right now my tumor markers are down but i am on a different combo. The pain could be cancer cells dying and flowing into the blood stream or could be somthing else that has nothing to do with cancer , and it could the cancer progressing if there are symptoms. I will have my scan in 15 days i will post my results , we will see of the tiny pain i am feeling is related. Meanwhile , be well and get a lot of rest.
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Syrmom, good to hear from you , it's been a while , i am glad you are well , and goid luck with adramaycin . My prayers are with you.
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Jaytee,
I am on herceptin/ perjeta too, and i habe been having some shortness of breath issues, i will have a heart echo next week , since nothing else seem to be wrong with me. I hope i will be able to continue on this combo. I am sorry you feel tired , get a lot of rest and i hope your heart is fine and that you can go back to perjeta. God be with you.
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Penny,
You are lucky to watch the snow falling, it snowed in my country after i left. In this part of the world now it is about 75 day and abot 65 at nigh and sunny. Enjoy the snow and your daughter going to school . Beautiful picture you put here m but then you always have nice pictures to post. Thank you . God be with you always. Hugs.
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Woodylb.....It's such a scary feeling to get short of breath, isn't it? I wish so much that I was like most women and my heart wasn't affected by the h & p. I asked my nurse at the oncs office if she thought I would eventually be put back on perjeta....She said she couldn't be sure, but that she had not seen the Dr put anyone back on it after it was stopped. Was sad hearing that after reading all the good things about people who get both herceptin and perjeta. Anyway....I hope and pray that you get good and positive results on your upcoming echo. I guess we need to take it easy....rest...avoid those activities that lead us to get short of breath.....that can be so difficult! I never minded winter weather, but today I am wishing that we had your temps! 75 sounds wonderful compared to single digits and teens!
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Jaytee,
It sure is scary when someone feels the air is not getting through. Mine was caused by neutropenia the first time. But i have noticed that everytime i get all three meds together for few days i keep coughing and short of breath. Then i am ok. What i don't understand is how come they cut you of perjeta , while keeping you on herceptin , because to my knowledge herceptin causes heart problems also. I don't think the nurse can answer can answer your question , the your cardiologist and oncolgist can do that. I know of alot of people who were taking herceptin then they had some heart problems the were stopped then later put back on.
I hope it would be the case for you so you can benefit from both medicine. May e in time he will put you back on it. Meanwhile , do what it takes to take some rest , don't do things which tires you or the heart. I really hope from the bottome of my heart that you will feel better soon and your heart doctor will ok the meds. My prayers will be with you , with the hope that you will soon get better and be able to take the full course. Hugs.
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Woodylb....at first my onc did take me off both herceptin and perjeta....this was after my ejection fraction dropped after starting treatment last June. After a few echoes where the number did not drop, she added the herceptin back....She is watching me pretty closely though....I think that she would prefer to give me both, but doesn't want to take that chance. My initial heart problems started back during my first diagnosis after getting A/C chemo. I did get a year of herceptin in then, but couldn't start it as early as she wanted and my ejection fraction went to a low of 42. During my 3 years of NED.....those numbers came back up.....I did a lot of walking and I also had been put on a beta blocker and a blood pressure pill. It's encouraging to know that my heart was able to recover back then.....Just don't know how long I can take the herceptin. There seem to be a lot of her2++ women who take herceptin for years. Can't see myself being able to do that. Oh well...one day at a time.....Just need to stay positive. Hugs back to you and easy breathing for both of us!
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Dear Jaytee,
It is good and healthy to take things one day at a time specially when dealing with cancer. For there is no telling what comes next. Who knows? You may be able to get back to normal again and be able to take both meds or continue on one. Either alternative is better than nothing. Your doctor is right to be careful and monitor you closely , it would be stupid to die from something else than actually the killer disease, that would be really ironic. Let's hope mine is still norma after two months on these meds. I also took adramaycin and taxotere on my first dx, this is why i am closely monitored also. This time. Unfotunately after my reoccurrence i never saw NED , iT was progression all the way, till my cancer seemed to change direction to he2+ , i was really running out of options. So let's keep praying that all this somehow ends well. I wish both of us fresh aor to breath and a lot of God's presence in our lives. Hugs.
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Good morning, all. Still thinking and praying for everyone. :-) Penny
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Morning Penny!...Hope all is well with you today...doing the same praying for everyone this morning! We have beautiful sunshine today...but it's still freezing cold. I have been staying inside as much as possible these days.....a walk to the mailbox or out to fill the bird feeders is about all I have been able to do.
Thanks again Woodylb...praying much for you to have good results on your echo! Hoping that the herceptin and perjeta keep any mets at bay. No matter what...let's enjoy this day! Is your son still home with you or back to school already?
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Hello Jaytee and Penny , i hope you are bth enjoying your crisp morning , while i am enjoying my cool end of summer like nights ! Have a blessed and beautiful day thanking Gd yet for another.
Jaytee, my son is still with me we will both be leaving together next wednesday after my chemo to our country, where he goes back to uni and i will get my PET scan and come back by the end of the month.
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RonnieKay, others with pain after chemo.
What is it? A year ago I had tumors and spots all over my liver with no pain and no clue I had mets but insisted they investigate an enlarged node under my arm that had been enlarged for years but then changed shape. They biopsied which led to scans and liver mets. Chemo ended May 29th with no pain in my liver even while being poked and prodded and then this fall I started getting pain in my liver area. Ultrasound and PET scan and blood tests in December showed nothing. Still it hurts. Why? It frightens me. It makes me feel like they're missing something. Shoot, maybe it's just back pain--or referred pain. I wish I knew. It's a nagging worry.
Otherwise--how are people with liver mets doing? I cannot complain! The Taxotere plus Perjeta and Herceptin knocked the tumors to nothing. Perjeta and Herceptin are keeping them undetectable. Hip-Hip Hooray!
Miche
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Miche - did they mention any dead tumor or scar tissue? Sometimes that causes pain. Wish I could be more help. But hey, thanks be to God for your NED status! :-) Penny
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Miche,
Are you talking about a pain which requires pain meds? Because i , like younbefore my dx my liver was full of tu ors no pain, but after i started chemo and specially the hercept/perjeta/taxol , i feel some pain specially after treatment , i am worried about it too . But my pain does not require meds just a small nagging dull pain. It comes and goes . I had a medica exam last week my onc felt nothing suspecious, i will have a PET next week , i can tell you more if pain is related to anything. Sorry i could not be of more help.
But yeyyyyy for being NED !
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The pain isn't severe, just nagging--like a nasty reminder that hey, you may be NED but I'm still here...
You bastard!
I live with a surgeon and when I suggest to him it's from scar tissue he says, puhh, I've never heard of pain from scar tissue from tumors, and your's weren't that big, I've removed much bigger.
My liver however was absolutely riddled with tiny spots of cancer and then there were several 2-3" diameter tumors and several 1" diameter. The oncologist did say my liver tissue was in great shape (despite my BFC daily wine consumption) outside of the tumors. Now with zilch on the PET scan and ultrasound the Doctors all just shrug their shoulders as in: what's to worry?
Yeah, easy for them to say.
Which is why I'm here. Sometimes the info is better and the support, oh, misery does love company.
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I'm so bad at keeping in touch with you all...have been trying to keep myself as busy as possible. I'm still managing to work full time...it's a desk job, so I can just sit at my computer most of the time. It really helps me keep going! Also I'm enjoying having my chemo schedule changed to 2 weeks on and 2 weeks off. After my bout with pneumonia I had three weeks with no chemo and it was wonderful being able to taste food again and actually feel almost normal! With this schedule I find that I am still able to taste food most of the time...what a blessing!
Woody - Can't wait to hear the results of your PET scan...I just know there is going to be improvement!! Glad to hear that you are getting to spend some time with your son and are enjoying the warm weather. Think of you often-just too tired at the end of the day to log on and post.
Syrmom - I am so with you on feeling like I'm not who I was. I have lost friends and some I have walked away from. Like you, I just don't have time for the trivial things and the drama over nothing. So many people are whining because they want to make more money or have a new car or new clothes, blah...blah...blah. We would all just like to live a lot longer and not feel like crap most of the time. C has changed us all. BUT, I refuse to let it take over my life. It may have changed me in some ways, but I'm still me inside...I just can't always do the things I used to; can't keep the schedule I used, etc. Stay strong, girl!
Leah - Sorry to hear your TM's are up...I agree with others, though, that may very well be becuase the tumors are dying! Thinking of you and sending prayers.
Penny - Love reading your posts - you are a true messenger of God's word and a blessing to us all!!! Hope you are feeling better.
Kjone13 - Rant away! This is one of the few places where we can do that. Most people just don't get it. We have all felt the way you do and still do at times. Bottom line is...Cancer Sucks!!!
Ok...I'll quit for now and promise to keep up on posting more often. I can at least manage the weekends...get to sleep in...WooHoo!
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Chichi, welcome back ! It has been a while true, but i ak happy you are well and up beat. Sorry for the pnuemonia and i am glad you got out of it and even happier that your chemo schedule has been changed and that it is giving you a break to be yourself a little bit.i agree with you keeping yourself busy is a good thing and it keeps you alive. So hurrayyyyyy for you. You were missed. Thank you for your wishes on my scans i pray to God you are right, i will post thre resultsat the end of the month. Meanwhile, i wil keep my fingers crossed for all of us and my prayers to all . When are you due for a scan? Keep us posted from time to time and i do hope you keep this spirit. Xoxoxoxoxoxo
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Hello people,
The xray came with decrease in pleural effusion and stable on liver. However since last satuuurday mom has been getting fever. It comes once a day and at times alternate days. Have taken antibiotics but still persists. In last 10 days she is getting increasingly tired even if she walks little and is the biggest worry so admitting in the hospital. Doctor wants to do ECG / 2d echo and Pulmonary angiogram to see if there is any clot in lungs since Mom is on the affinitor and Aromasin combo.
Hope she is out soon and can move normally
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Woody,
I should have a scan at the end of the month to see if the new schedule is still effective. With the 3 weeks on and 1 off, the tumors had shrunk significantly, so onc thinks it will stil be effective with the 2on and 2 off. I sure hope so as it has made life a bit easier for now.
Blessings to all!
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JCSindia - sorry your mom has to be hospitalized but at least they'll get to the bottom of it. And thanks be to God for the decrease in pleural effusion & the stable liver! Keep us posted.
Chichi & Woody - looking forward to hearing good news from both of you at the end of the month :-) Penny
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Jay,
I am so happy your mom's liver is stable and her lung's pleural effusion is dicreasing, but i am sorry she had to be hospitalized but like Penny said at least they will get to the bottom of it and give her the right treatment so she is back to normal again . Keep us posted and my orayers are with her and yours.
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Chichi this is wonderful ! I hope the shronkage continues , i feel the same as your onc the change in the protocol will still be effective and i feel we will hear good news at the end of the month. Hehehe we have both scans almost at the same time.
Penny , thank you so much for your wishes and prayers i hope we hear the same good news about you too very soon after your see your onc. Thanks be to God for the treatments we are getting which are keeping us in this world. Thank thank you Lord.
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Hello All - Quick question for you all: I started Adriamyacin last Friday. It did kick my butt Sunday and half of yesterday (still feeling a little woozy today) but my concern is that I feel nothing in my liver, nothing at all. Every treatment I ever started I could feel pain, which in my mind, meant that it's working. And as the pain decreased, the tumors went down. Nothing at all this week, has this ever happened to any of you? TIA and wishing you all a good day!
Laura
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Laura, what's your schedule on Adria? I'm 3 on/1off. Only had 2 in Dec. due to holidays (my choice) and just finished #3 for Jan. yesterday - I'm on what's considered a low dose. I don't get liver pain, but have found increased general abdominal discomfort - lots of gas, worse when it feels like trapped gas. I live on Mylanta. Makes me feel generally shitty most of the time. I enjoy eating & this kills it. Going to try & be more aggressive with the anti nausea's this week.
I really would not judge 1 tx on whether its working, Each chemo is so different & our reaction to it. It's all cumulative, so hang in there.
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Hi Syr - I'm 3 on/1 off also, considered lower dose. And you're right, it's only the 1st one. I did take a Zofran Sunday about noon and woke up about 5 pm. I think it takes the nausea away by making me sleep all day! I'm still feeling kind of out of it today though but no gas pains yet. That will probably start next week, lol. Thanks for responding!
Laura
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Laura, keep in touch, we can compare notes!
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I got my test results today...from my PET scan...My cancer is very progressive at this point...what I thought last Tuesday with a CAT scan in the ER of a couple of sm lesions on my liver have turned out to be 20 lesions now...after the PET scan...OC told me that my bone mets some of the tumors are glowing RED...that means to what I understood from him is that the Cancer is on High alert...so I am starting Adriamycin tomorrow morning...I am so so scared...it is happening so fast....Carla
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Carla,
So sorry to hear of your progression. I hope your new treatment will take care of all of those lesions.
Terri
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Carla,
I am so sorry to hear abput your progression, i hope Adria will help restrain them and shrink them. Prayers are heading your way. I hope your mind is soon put at ease.
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Carla....thoughts & prayers for new txt to take the lesions away...completely!!! Also hoping you feel strong!
Praying for all to have good scans coming up! I'll find out when mine are on the 27th...trying not to be too anxious after 3 months w/out chemo. Been consumed by family after returning from CA. Now getting ready for company coming to stay for Super Bowl weekend. So excited!!
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Carla, no...I'm sorry for you because you are so upset (as I would be too) but you have so many other options so please try not to worry. You are probably getting the lovely Adria right now. Just relax and let it do it's thing. I started Adria last Friday, today is my first normal day athough yesterday I was able to get through OK. Crazy joint pain though, especially in the knees - try to get any steps trips done today or tomorrow (like laundry in the basement for me) in case you get the same symptoms. Keep in touch.
Laura.
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Carla, PM me anytime ... I understand how scary it is, been there, done that, still doing that. I'm on Adria too (as I explained b4). Keep us posted & we can help you deal with any potential s/e. Sucking on ice does help to prevent mouth sores, for instance. To me that's a small price to pay. We are here for you. Hang in there.
Anyone experience their liver enzymes rising while on Adria? My AST & Alk Phos keeps going up!
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Carla - Just as fast as cancer can progress, adriamycin can kill it even faster. It's pretty powerful. Sorry to hear your bad news but I look forward to the day when you tell us this treatment is working!
Prayers for all,
Penny
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Carla, a hint - popsicles are more fun than ice to chew on during treatments.
Leah
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RonnieKay , welcome back, hope you enjoyed your trip, meanwhile i missed your posts.your scan is on the 27th and mine onthe 28th after 4 cycles herceptin , perjeta and three taxol. So let 's compare notes hehehe . I hope we both have great results.xoxoxoxo
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Havent been on here for a few days...but thinking of you all. Carla, I am also sorry to hear about the progression.....adding more thoughts and prayers for you that the new treatment will zap those tumors. When I found out last spring that the cancer had returned I remember how my onc looked so sadly at me and said that it 'didn't look good'.......and now after treatments every 3 weeks, she is happy with the progress we are making. We can never say never and especially never give up! I do understand being scared though...I know we all do. Hugs to you.
judy
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Thanks to all for the support... Can you ladies help me with your experiences on Adriamycin...and the side effects you had and how you dealt with them...just want to know if any of them come up for me...
Have a great Day!!
Carla
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Carla....I had adriamyacin/cytoxin as part of my first round of chemo when I was initially diagnosed with bc back in 2010. Had 4 rounds, over 2 months time. My hair fell out...food tasted awful....had a lot of fatigue. I needed to have neulasta shots after each treatment, which has side effects of its own, but it helped build my white and red blood counts back up. I had quite a bit of nausea....not so much on the actual treatment day because they gave me emend before the infusion, but in the days following. I learned that I needed to keep ahead of it by taking compazine or some other anti-nausea product on a regular schedule for several days after the treatment. I remember counting down those treatments.....and before I knew it they were done. Do you know how many treatments you are going to have? It was funny that after I finished the a/c...if I drove past the oncs office....Just seeing it would give me a brief feeling of nausea! That old mind/body connection thing, I guess.
I did not get mouth sores, but I remember being worried about that side effect. The ice chips/popsicles are a good idea.
Did your onc have you get an echocardiogram or a muga scan before starting your treatment? It doesn't affect everyone's heart, but I was in the small group that it does....they will probably monitor you for that. I don't remember how high a dose I got at that time. Don't know if they are using a smaller dose these days. I hope it all goes well for you.......most of all that the treatment will do a number on those liver tumors! Lots of love and prayers!
judy
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I am getting the treatment weekly at low doses I believe the nurse said 25 mills....up to 6 or 8 we will be scanning after 6th round...Yes I did get a ECHO scan done...I like you also at A when I was first dx in 2010 with my original bc dx along with 2 other chemo treatments...I don't remember getting sick at all..even my daughter said that I rode the train pretty well...just remember getting tired...but this is a whole different ball game...now...bone mets/liver mets....and I have gone through a bowel perforation from Xeloda... and alot of weight loss due to that.. Today I feel ok...I am taking my Zofran every 6 hrs...so yea I'm keeping up on the nausea...
Thanks Carla
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Carla...you just answered my questions! Wondered if you'd had A w/first dx, w/lymphs involved. Glad your heart is healthy enough to do it again & hope it does the job! I'm sorry xeloda was so harsh...did you go off & then have progression? Hopeful your body will tolerate A as well as last time & 6 week scans will be good news!!!!
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RonnieKay yes lymphs were involved...the first time...No It happen while I was on Xeloda...I am hoping also...just want to live...Carla
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Carla, I asked the same question & there's some information on the following discussion board that might be helpful -
"Adriamycin (Red Devil) for Stage IV."It's great you were able to tolerate it so well the first time around.
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Carla - Skin problems on hand/feet are often a problem on Adriamycin. I would recommend getting some Udderly Smooth brand lotion as it was the only thing that worked for me.
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Carla - I was told that I'd probably get mouth sores when on Adriamycin but that a daily rinse of water and baking soda could keep them away. I did the daily rinses and never got the mouth sores but I'm not sure if it did the trick because some people don't get the mouth sores anyway. Just an FYI.
Jaytee - I like your statement about the mind/body connection. Currently, whenever my husband and I pull into the parking garage for my treatment center, the smell in the garage sometimes makes me a little nauseous.
Prayers for all,
Penny
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I have never done doxorubicin (Adriamycin) but did do adjuvant epirubicin which is a similar drug. I had trouble with mouth sores. One suggestion - use a soft toothbrush or take care if you brush your teeth aggressively so you don't cause abrasions which can lead to some very painful sores around the gums while having this medication. Also, I used a mouthwash that you can buy over the counter which contains chlorhexidine. It helped my mouth sores but it did sting sometimes.
SyrMom, I think raised liver function tests are not uncommon with doxorubicin. Ask your chemo nurse or oncologost who will be able to put your mind at rest.
I am joining next week's scanner party. Booked in for scans on Wednesday. Results Thurs. Fingers crossed. Liver pain significantly diminished and feeling better than I did while on Xeloda - hated that stuff.
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Thanks Springwatch.
I hated Xeloda, too. Did NOTHING for me except cause hand/foot syndrome and ruin a summer!! However, I've heard it can & does do wonders for other pts.
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Woody...I don't have scans Wed, just see onc & will talk to him about when to expect them next. I hit 3 months off chemo yesterday & since he doesn't do liver enzymes every month when off chemo, it'll be time for those Wed. TM's are still good & they are a pretty good indicator for me. I only have cea & ca27/29. I've seen others mention another...which is it? I'll ask my onc about it.
Hopeful for everyone scanning next week!
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Ronnie, well it is even better , frankly you could do wothout the stress of waiting for results. Since yur TMS are a good indicator than yayyyyy and i hope they stay good and low. The other marker is CA-15-3 it is specifically for breast cancer. This is the TM i do and the last time there a drop in number. So let's hope it is a good sign that the combo is working. Still , istarted to get nervous because the results will be decisive of whether i continue with it which would be great or ... Well really not too many options if it is not the case. I am back home now in Lebanon , my son start uni on monday and my scan will be wednesday. Ususally, they make me wait to talk to the doctor afteri am finished with the scan and he can give some pointers. But will talk to my onc she can get a verbal results by wednesday night. Friday i have an appointment with her and saturday i will head back to my DH. So still , i hope we both get something to smile about. Xoxoxo
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Well, I am in the month of rechecks. so far my echo is the best is has ever been since they began monitoring. That was amazing. My oncologist was giong to let me skip this cycle of body CT scans as it has been 2 years since mets diagnosis and I have been very stable with nothing to remark on. Unfortunately for me my brain MRI wasn't so routine. I have growth in my old tumor bed but no new tumors. So I am now scheduling all sorts of tests to get ready for my brain surgery to take the turmor out, followed by radiation. I also now have to have a CT of my body to make sure my liver is doing well. That trumps everything. So I am in a bit of a tizzy but trying to reframe things. I actually have a good feeling that my liver is behaving and that i will only have to deal with the tumor in my brain. But it is scary. I am happy to hear that people like you ronnie are doing great without medicine because I will have to go off my Xeloda and Tykerb in order to have my brain surgery. So I am praying that my liver stays good while off the medicine so I can deal with my head. I realize this is for lvier people but it all goes together for me. People like Ronnie give me hope that I am not starting a downward spirlal. Here is too goo
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Leftfoot,
Sorry for the brain MRI results, and i hope all stays in check with you so you can have your opration. My prayers are with you and please keep us posted. God bless you and yours.
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Oh Leftfoot...you've had such a good run on xeloda/tykerb..I'm hoping the body scan is totally clean & you will be able to zap the brain tumor quickly! Wouldn't the brain take precedence, even if the liver has concern, or is it considered slow growing? Were you feeling dizzy or having any familiar ses of brain mets? I have a good feeling that you're strong & ready to take on this next challenge...I'm just sad you have it. Keep us posted...prayers for you.
Woody...A big week for you & DS...and I'm pleased they will let you know about scans quickly...2 days seems like an eternity. Then...back to your loving DH & warm weather! Prayers always!!!
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Hello everybody.
I've been on this side for more then 2 years, mostly reading. Last Thursday I had PET scan and it came back positive with hepatic metastasis.
I am scared
Please help
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Sorry Ella, that you've entered the mets world. I got the liver mets news & was told to spend the time I had left with family...I had no clue I'd start chemo, it'd do the job of blasting tumors, and I'd be celebrating life 2 years later, and there are many of us! There is much hope. I'm glad you came to this site...we're here for you, whatever you need. Hugs to you
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Hello Ella,
I am so sorry you joined our club of liver mets. Nevertheless, do not be be frightenned, it is serious of course but for most of us till now manageable. I was diagnosed last year and this is my second year, i am on a new combo and it looks promissing , this week i will know more since i will have a scan. I am glad you came to this thread, as you will see it is full of wonderful ladies and everyone is extremely caring and supportive. Drop in any time you feel the need or have any question. We are here for you . I second RonnieKay whatever you need. God bless you
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Hello Ella, Welcome. I understand the fear. I, too, have liver mets - started out with bone & in 2012 found the liver mets in a routine CT. I don't post a lot, but come to the boards and read every day. There's a lot of hope here & it helps to keep me going. The truth is we are all different & you never know what chemo may be the very one to rid the buggers. So know there's hope. We will do our best to help you get through whatever regime you are on with tips for managing, etc.
I also get scanned next week, but already know by my labs not to expect good news. I understand it's because I was off tx for over a month due to a toxic reaction, just hope the beast hasn't set up house somewhere else as well.
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Hi Ella - I also don't post often but read here everyday for inspiration and support. I was diagnosed with bone mets in 2009 and liver mets in 2012 and am hanging in there. I always feel bad for the 'newbies' who have just heard the dreaded 'you're stage 4' words...nothing is worse than that shock as I remember it like yesterday and I was told in 2009. But things will come into place and you'll settle into a new norm, you'll see. Come back and talk to us as many times as you need to, best wishes.
Good Luck to those scanning this week; I'm really praying for good news from all of you.
Laura
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Hi, Ella. I understand your fears. We probably all still get scared from time to time. You'll find the fear subsiding as the years go by. There are so many women out there who have been living with liver mets for years and years, probably because there are so many treatment options. Besides chemo and hormonal therapy, there's Radiofrequency Ablation (RFA), Sir-spheres, Stereotactic Body Radiation Therapy (SBRT), Chemoembolization, and surgery. Some of these procedures can be done more than once. Just make sure you have an oncologist who is willing to consider those options. You'd have to consult with an Interventional Radiologist for all of them except the SBRT and surgery. SBRT is done by Radiation Oncologists and surgery is, of course, done by a surgeon who specializes in the liver. A great website to check out is: http://www.beatlivertumors.org
Prayers,
Penny
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Laura,
Thank you so much for your wishes about scans , ihope your wishes and prayers are answered to all of us, and be returned to you thousand folds. Hugs.
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Ella--I don't post much in this forum. Your world has just been turned upside down. Things will be crazy for a while. Kind of a whirlwind. You will settle in and get busy with treatment and continue on. Finding your new normal is a process. I am 2 1/2 yrs out from liver and bone mets dx. I am still trying to find my way. That's why we are all here. Blessings to you.
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Ella, Sorry you find yourself here but as you can see there are number of people here who have been dealing with liver mets for years and I think you have every reason to be optimistic that your treatment plan will deal successfully with your liver mets, too.
SyrMom, Xeloda did absolutely nothing for me, too. I won't be going anywhere near it again. I felt terrible on it. No HFS but plenty of stomach pain and GI side effects. The few tiny liver mets I had at the end of Sept grew like mushrooms and spread. Good luck with your scans this week. When will you get your results?
Woody, Good luck with your scans, too. I hope you see some good results. I have an MRI on Wed. I will be praying for all of us.
Penny, Thanks for the link. I am going to check it out now.
Laura, Just wanted to say that I hope you are doing OK on the adriamycin. How many cycles are you going to have? My onc mentioned it in passing but because I had Ellence (epirubicin) as part of my adjuvant therapy I am near my life time dose of anthracyclines. I could probably have another two cycles but that would be it.
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Ella, I'm joining everyone in welcoming you and commiserating with you. I hope you find some equilibrium soon.
I'm having a PET/CT on Wed. It was going to be a CT but PCP raised a question about my kidney function - creatinine had been off for a while (probably from Afinitor) though it's been normal for over a year. She thought I'd need to be hospitalized the night before and given *drug with name I don't remember* plus IV fluids in order to have it. Onc said he thought I would be OK but said if she was worried he'd switch to PET/CT. For a few reasns (mostly not medical) I'm glad. 1. PET/CT gives better results (probably). 2. It's easier to drink the contrast for PET/CT than for CT. 3. I get a lovely lounge chair to sit in while waiting for PET/CT, as opposed to a hard waiting room chair (and the wait is the same length!). 4. I can get an appt sooner. 5. The results are back sooner. The last 2 are because the PET/CT dept is run more efficiently than the CT dept.
Both have the same amount of scanxiety, though this time I'm sort of resigned to things in a way since my markers have been climbing - I don't expect good news.
Leah
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Springwatch ... how is the Carbo/Gemzar combo treating you? How are the side effects compared to the other chemos?
My CT & results are on Wed., get results of MRI of thoracic/lumbar spine on Tues.
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Leah, Good luck with your scans on Wednesday. There seems to be quite a few of us booked in for that day.
SyrMom, I have had some rough moments on gem/carbo. A few days when I have had no energy and find if I stand too long I can feel a faint. My blood work has been all over the place and I had to see a hematologist who just thinks my bone marrow is over-reacting to the chemo. My HB and neutrophils have been low but so far not outside the normal range. My platelets have been the problem. Low one week and then more than twice normal the next. As long as the chemo is working, I should start my 4th cycle on Thurs. I have managed to get a lot done these last few days as I had no treatment last week. I am finding it tougher than taxol which has been my favourite chemo, so far. I hated and I do mean hated, Xeloda. I felt terrible the whole time I took it and it was almost a relief when I found out it wasn't working for me and I switched to gem/carbo.
I have never had a PET CT. My onc uses MRI and a standard CT with contrast to measure my lung mets, although he hasn't booked me in for the latter this time. I think he is more concerned with my liver. My lung mets have been stable after initial regression. I would be interested to know how long a PET CT takes. The MRI lasts almost an hour. They have installed a new MRI machine and upgraded the two others they have at my centre. I have been told that it will only take about 40 mins this time around. I don't know why but I have started to feel more and more claustrophobic in those things. I think I will have to ask for an eye mask on Wed. and see if that helps.
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Thank you very much everyone for such a warm welcome, I feel better already!!
I had an appointment today with liver oncologist, he wants me to take an MRI this week and reassured me that I should be cautiously optimistic, most likely I will need a surgery, but there is a chance... oh my, lets pray for that chance..
A bit about me
Four years ago I lost my husband to Lung cancer and when I was beginning to see an exit from Cancer la-la land, BC hit me in 2012 on the right side, I had double mastectomy and chemo, then last year totally by accident pet scan lit up on my chest wall, my doctor even refused to upgrade me to stage 4, well again chemo and radiation, finished in November and now this, just had my first hair cut...oh well, it is what it is, we should keep swimming.
One of you posted the quote by Arthur Ashe that really resonates with me: "Start where you are. Use what you have. Do what you can."
Cheers
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Had 2nd Treatment of A (Red Demon) My tumor markers have gone up from 3wks to 187 from 100 still on Faslodex which I get next mth...I was asking my NP who works aside my OC a lot of questions about other meds for se and about this treatment...felt good to do so...she gave me reassurance...
I can't believe April 1st it will be 1 yr since this dx...so much to be thankful for...just being here...
Had some scary news regarding my 10mth old grandson...he has signs of Bells Palsy....Daughter noticed it when he would cry...his left side of face would droop...so took him to be seen and the doc's said early signs...but treatable with steroids...low doses...about 9 sessions..but will have MRI to rule out any brain trauma...tumor etc...but he is still his adorable self...playing...laughing and smart as a whip...I just can't see something like this heaving my daughter right now...
Have a great evening...the couch is calling me to rest...L&R Carla
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I'm sending my strongest prayers...that all will have good scans...so many of you scheduled this week. Each time I've had a recurrence, it's hit me like a freight train, but scans w/liver mets have been good...thanks to Navelbine. Now, being off, it's hard not to feel a bit like you, SyrMom & Leah...wondering what my next scan will show...even though TM's and blood are good. I'll find out tomorrow, when I'll be scanned next. In the meantime...I am being hopeful & optimistic for all, my sisters!
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Radioactive spheres will be put into the other lobe of my liver on Feb 9th. In the meantime, I'm still receiving biological treatments (Herceptin and Perjeta). Don't know when my next scan is. Thanks for continued prayers. 😊
Penny
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As I expected, the "Red Devil" Adriamycin, has failed me. Had the worse scan results I've ever had. Progression in spinal mets and liver mets; old liver mets bigger & mult new ones have moved in. I'm grateful that so far no other major organ is showing new mets. However, the onc basically said in so many words, he didn't know how I was functional based on the "wow" of my scan results!!
So, suppose to move on to Halaven, once approved. It better be approved!! Was shot down b4, but that was b4 Doxil & Adria. So, welcoming all tips on dealing with Halaven. I understand the neuropathy can get really bad enough to have to discontinue it. I already have neuropathy from taxol. What about nails? Hair? Big C or Big D? Nausea?
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Syrmom, i am so sorry for the progression, i hope you get very soon the approval for Halaven and will pray it will be the one which will kill your cancer. Hugs .
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Springwatch,
I had the combo carbo/gemzar , it went fairly well the first three cycles but fourth and forward it worked a number on my blood, i had one transfusion, and very low blood platelets. I have had a small response and it was not the right combination for me. I was tired the whole time. This combo does not seem to work well for ILC breast cancer i hope it works well for you with the minimum side effects.
The PET scan will take about two or two and a half hours .
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Penny, good luck on your spheres the 9th more and more prayers heading your way . God bless you. Hugs.
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Hello ladies,
I wanted to answer each and everyone of you before i give you my news.
I had my PET scan today and got the verbal results from both the radiologist and my MO.
Complete response , nothing showed on the scan no liver tumors, no spinal and hip mets nothing.
No SUV t trace . HALLELUJAH ! Praise the Lord , A BIG thank to each and every one of your prayers , i am overwhelmed, i could not beleive it i had to make the radiologist repeat over and over thsn called my MO to confirm . I am blessed to have all your support, blessed by my family and friends and most importantly God's mercy is unlimited . Wowwwwww
To all of you wh had scans today and those who will have them later, i wish you good luck on your results and my ever fervent prayers will be with you every single day . Love and hogs to all.
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RonnieKay, my dear friend wowww for your wishes they were answered and thank you for your prayers , i hope you reade my post , for the first time since my dx i get zero nothing in my results . Your support was tremendous and your friendship precious. I will not worry about you not having Nevalbine, you will be fine without it and i hope and pray for a long long long time. Kisses
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Penny, our spiritual guide i want to thank you from my heart for your endless prayers and extreme faith and belief . God bless you and yours.
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Syrmom - sorry about the news. Pray Halaven is approved and it works!
:-) Penny
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Woody - Thank You, Lord, for the great news! :-) Penny
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OMG!!! Syrmom....I am crying my eyes out of fear ...for you and now myself...I just started the "Red Devil" Adriamycin, had my second dose yesterday...and having a very rough day today from it... I can't hear this right now...I am screaming right now...I AM SO SCARED NOW...OH I don't know how you are dealing with this news...myself...I AM BALLING right now...
OH GOD...I DON'T KNOW HOW MUCH MORE TO I CAN TAKE....
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Carla, just because it didn't work for me doesn't mean it won't work for you - we're all different. Adriamycin is considered a very effective drug for breast cancer, as is taxol. Taxol worked wonders for me for 11 mo, Adria did not, so you just never know. Pls. hang in there. Yes, this sucks, but at least there's something else to try. Yes, I'm upset & afraid too. I was also off tx for over a month because of a toxic reaction to doxil, so another reason for my progression.
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Dear SyrMom,
You are AWESOME!! my hat is off for your courage and the way you are trying to reassure Carla. This is why I am here, to be able to meet a woman like you. I am praying very hard for you and hope I could make it easier for you.
Carla hang on there, stay positive, IMAGINE how those drugs go through your body and clean it from any C, just picture it, try to do it every night in bed and specially during the treatment. VERY IMPORTANT.
Woody, so happy for you, so so so happy. I just met you all, but feel so blessed.
Good night
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SyrMom...you are a warrior & a strong one (I know it sucks to have to be strong...but it's a good thing!). I pray the next drug will work...and you will continue that spirit & courage! Carla...the courage that comes through is from the desire to live...you have that, you do, and you can do this.
Woody...I have tears of joy and relief for you. Thinking of the testing you went through...in various countries, uncertainty in txt...now, the very best news you could hear...it's overwhelming & wonderful. Thanks be to God...
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Ella thank you for you joy and welcome among us , you will see how much these ladies have courage, love and compassion to give to the entire world , they are amazing.
Syrmom your courage is commandanle and your will to live is even more so , as always you will come out of ot a victor.
Ronnie your joy is overwhelming and your kindness touches my heart i am truly blessed having you and the others pray for me as i pray for you all. Love and hugs to all ! May you all be touched by the love and grace of God and feel his warmth and live his wonders.
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freebird53 - Syrmom is right. All chemos work differently on everyone. Going into it, there's no reason to think adriamycin won't work for you. One day at a time. Let's assume it's working until we're told otherwise. There are tons of chemos and cocktails out there. Coming here to vent your fears is a good thing to do - we're here for you. We've all been there. I hope you feel better soon.
Prayers for you and yours,
Penny
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Hi everyone. I don't post very often but I visit the site everyday. I take courage from the support and hope from all your prayers.
Syrmom. I had progression in liver in November after a chemo break of 4 months. I have just finished my 4th cycle of Halaven. For me the fatigue has been the worst SE. I have not had any signs of neuropathy yet and I have not lost my hair completely. I have a mans haircut but it is growing back quickly. I've had a ct scan but I won't get results until 17th Feb. Rest is very important and the need to keep bloods good. Plenty of dark green veg and high vitamin c fruits like persimmon and kiwi.
Hope all goes well for you. My thoughts and prayers are with everyone on this gruelling journey.
Cx Helen
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Woody, I am DELIGHTED to hear your good news!
I hope new tx work for all of us.
I had my PET/CT yesterday, answers in about a week. I'm trying to pretend I'm not worried. It's not working.
Leah
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Leah thank you so so much, i hope you all follow suit. I have been waiting for you to post your results, i truly hope they are not as bad as you think or fear. But to tell you the truth i was worried about mine till the last minute nothing worked to keep the worry away. I hope you post good news very soon and remember there still a lot of cocktails out there If and i repeat if there is something, one will be the right one for you. I will keep praying for good results for you and wait for your post , fingers crossed. Hugs.
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Thank you very much for all your support & prayers, I appreciate it very much. Helen, thank you for posting regarding Halaven, I'm trying to learn all I can b4 it starts. This is what I usually do in order to try and manage the side effects.
The one side effect from who know what that no one has been addressing despite my reporting/complaining is new onset of muscle spasms, anywhere, anytime. Very painful. My calcium/Mag levels are fine & no other electrolytes are off. RO said might be bone marrow kicking in, Onc didn't address, said nothing. Anyone out there experience this & if so, what was it and how did you address it?
Woody, didn't mean to ignore you - I'm very happy for you. Are you off chemo now or are you continuing with the chemos you've been on?
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Syrmom, Carla, mutherflush, I"m thinking of you and hope the chemos work on the cancer with a vengeance and leave you doing well! Wish I could give you each a big hug and a few moments of calm and an infusion of "Zest for Life" or something. And I agree, IMAGINING the drugs getting to all the right places might help. One day, one hour, one minute--look to the beauty that is life, however much of it we get.
Syrmom, I also have muscle cramps which started during Taxotere + H&P and have continued with the H&P. Can be feet, calves, hamstrings, arms, between my jawbones, stomach and are alleviated by vigorously stretching the affected muscle but a slight movement can bring it back. Electrolytes, all blood work is good. Taking calcium/Mag doesn't help, exercise doesn't seem to influence it, can happen anytime. So I can't say I've figured it out at all. None of the docs or PAs seem to know what drugs it's from or how to treat it. The Physiatrist just gave me gabipentin in the hope it will help with the neuropathy and just in case it helps with muscle cramps. I'll let you know if it helps. He also sent me to PT thinking that better posture and movement might help.
anyone else on Gabepentin for neuropathy?
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Syrmom , i never had any doubts that you forgot about me. But you have enough on your plate right now and I am totally concerned about you. I hope halaven will work for you better than taxol did and a lot of people got good results on it. You are so strong encouraging everyone else that in it self deserves a lot of respect. You know as well as me that each chemo works differently on each individual, so hoefully tHis one will be the one to put you back on track. I will pray for you Carla and Mutherflush.
I had spasm at my first dx with decetaxel and neuropathy my MO advised easy walks which did help , also i had easy relaxing massages to help the blood circulate better these helped a lot too. Hugs.
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Hi everyone,
So much reading and catching up to do after just a couple of days.
Penny, I am so sorry that the Adriamycin did not work. I hope you get approval to start Halaven soon. There is a website, www.halaven.com, which is owned by the manufacturers of this drug and has a lot of useful information if you want to take a look. I have no experience of this chemo so I am afraid I cannot be of much help. Good luck with the radioactive spheres on Feb 9. I am praying that they do a good job on your liver mets.
Carla, Each of our cancers is unique to us. The classifications the oncologists give to our cancers is very broad and if we were able to look deep into the genetic profile of each of our cancers we would be able to see how they all differ. Just because someone does not respond to a particular chemo does not mean that it won't work for you. And if it doesn't, there are plenty more to try. You will find one that works and Adriamycin may be it.
Helen, Your scan results belong to you as much as they do to your medical team. You are entitled to ask for a copy. Your chemo nurse or breast care nurse will be able to print off a copy, if you can't wait until the 17th Feb. The only thing I would add is that the radiologist's report can take some effort to interpret. Things that look alarming on first sight may be nothing to worry about.
Leah, I hope that your scan results are better than stable. I am keeping you in my thoughts.
Woody, Congratulations on your great results. WOW and I do mean WOW! your news is wonderful.
How much of the 2 to 2½ hrs you mentioned for the PET scan is actually spent in the scanner?
I got my scan results today. Good news. Regression in soft tissue tumours. Reduction in activity at all sites, including bone. Last sentence of report reads, favourable response in all disease sites. I am carrying on with gem/carbo. The only fly in the ointment is my HB which is sliding away, leaving me a bit breathless and tired. Some muttering about another blood transfusion. WBC and neutrophils are holding up. In contrast, my platelets are up again so I am going back onto the daily aspirin until they come back down to normal. I am grateful that we have found a chemo that is working.
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Springwatch,
Thank you for your kind words:)) and i hope carbo/gemzar keep working for you and you keep getting good results on your scans. Of the 2, 21/2 hrs in PET SCAN 40 min there an IV glucose during which you get the nuclear injection , they make you wait 40 min, then about 30/40 min in scan but it is not bothersome, then afterwards they make you drink water and use the WC , then you wait for the radiologist to check if there is any retake of anything he did not like if all is well you leave.
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I only missed a day or so on these boards, but apparently I missed a lot. I've been sitting here staring out the window, watching the snow fall, and just not knowing what to say...I'm heartbroken for those of you who are scared and disappointed. This hand we've been dealt is truly just so hard at times. And yet I'm so relieved for those of you that got good news this week. I wish it could always be that way for all of us, but its just not the case. I hope the ones with good news get to enjoy it for a longlonglong time! I too, wish I could give each of you a big hug, but virtual hugs will have to do, along with many good wishes for good treatments, and little side effects!
Laura
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Oh gosh, what a day. Spend all day fighting the insurance. My doctor wants liver MRI, but of course insurance think I need CAT scan, just wonder if it was the other way around, they would push for MRI?! just saying... I don't want to bother you with all the glory details as I am sure you have been through this one way or another. Just for the laugh, imagine insurance receive a call from Barack Obama doctor asking for MRI approval and the clerk goes: "No-no, you dont need MRI, we think CAT scan will suffice..." Funnnny. Hope you are laughing with me
Can somebody tell me what is the difference?
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for those with muscle cramps- have they checked your potassium levels? I konw mine if very low due to the medicine and I have to make sure I eat some potassium rich foods. It has helped me some.
Thank you everyone for your updates. I am still a little preoccupied but want you to konw I am thinking about those of you who are changing treatment options and celebrating for those who have had good results.
I go to the oncologist tomorrow to discuss my upcoming brain surgery. I will also get my CT results for yesterday. Hoping that since she didn't call I get good news on that front. Then it is off to have multiple tests done so that I can have surgery in February.
God Bless everyone.
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MicheTheVanquisher - I tried Gabapentin for neuropathy. Didn't work. I take 100 mg Vitamin B6 per day, which seems to help.
springwatch - Thank You, Lord, for the great news! :-) Penny
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Spring...glad for good response!!! HAPPY!
Leftfoot...I'm agreeing that no news is good news...get that brain surgery outta the way & on to healing!!! We're behind you all the way...and that's from a very good right midfielder here-first place, over 30-south Puget Sound League (30 years ago!!!!). Go Girl!
SyrMom...OMG...thankfully my spasms stopped once Navelbine stopped. I don't have them on h/p. I literally would stand up from the couch & not be able to stretch my leg out. The pain was sometimes severe, most often irritating...so I'd just take deep breaths, talk to myself, saying it'd be over soon & wait for it to subside (I'm sure I looked crazy). I noticed it more after exerting myself...long or fast walks. It'd be in my hands if I tried to grip something. I noticed staying warm helped...keeping socks on. I was a mess swimming...cold water made my feet totally deformed. I'm sorry you're dealing with it...it's awful. I hope someone's got a good answer...cause all I did was commiserate...sorry.
Leah...it's ok to pretend not to worry...it may work in a few days...I hope! In the meantime, tons of good thoughts that all is much better than we can imagine. I want us all to have a Woody moment
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Thank you all for your responses. I get a tight feeling under ribs and since changing since changing from daily Iban to monthly Denusomub injections for bones I have really bad bone pain especially in my hips. Like you Ronniekay I find it difficult to stand. I know Halaven can give you bone pain so I will check with Onc at next visit.
Congratulations to all you ladies who have received good news and good luck to all you ladies starting out on nee treatments.
Lots of hugs. My prayers are with you all.
Helen
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Thank you everyone for celebrating my good news with me. My liver mets grew so quickly and to such a size when I was on Xeloda, aka cancer fertilizer, that I jokingly said to my onc I knew the new treatment was working because I feel so much better and am still here to say that. He agreed with me. To be honest, I was so bad at the end of Nov I knew in my heart if the gem/carbo didn't work we might not have enough time to try another chemo.
Laura, I am thinking of you. Watching the snow falling outside your window. I find that sometimes we are lost for words in the face of this illness. I also wish that sometimes those not dealing with MBC were lost for words, too, but that is another story. I am watching out for the early signs of spring from my window. We have had some frost and a bit of snow here but you can see that spring is on the way. When I was having my IV yesterday I was able to look out into a quadrangle where a cherry tree was breaking into a mass of pink flowers. My daffodils are coming up but still some way from flowering and the snow drops under my apple tree have been in bloom for some time. The blackbirds have paired up and the robin has been making frequent visits to the garden making sure that another male doesn't muscle in on his territory. Our robin is very different from yours, which is a much larger thrush-like bird. Our European robin is a small, very territorial little bird. It has been known to fight and kill a rival but I have never seen this. Usually, one of them backs down very quickly.
I miss the photos you took of your view down to Lake Champlain. Any chance we could see some more?
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Ellamilana,
I am sure you know that your insurance co. wants you to have the CT scan because it is cheaper. I came across this website:
http://www.diffen.com/difference/CT_Scan_vs_MRI
I have always had MRIs. This week was my 9th! I did have a couple of chest CT scans at the beginning but not since. As there is no ionizing radiation involved with the MRI, they can be repeated more frequently. Just as well as I have had a lot of radiotherapy this year. Obama's doctors probably wouldn't have a problem getting an MRI organised!
Leftfoot, I agree also. No news is good news. Especially if your onc normally phones you when things are not right. Good luck with the brain surgery. Don't focus on the up coming op. but focus on where you will be when it is behind you. Hopefully in a very good place.
SyrMom, I have neuropathy in both feet and get terrible cramps in these areas. My feet literally curl up sometimes and I have to leap up and walk around on them to get rid of the pain. I have not found anything that relieves the problem but can sympathise with what you are experiencing.
Helen, I get bad pain at the site of my bone mets after my ibandronate infusion. I had it yesterday and woke up at 2:45am because my sacrum felt as someone had hit me with a hammer. It was throbbing. If I am not due to take more pain killers I find putting a microwavable heat pad on the area helps. My onc seems unconcerned. Bone pain after the infusion is common, apparently. It happens every time I get it but it will disappear in a few days. Then, I just have my 'normal' bone pain.
Thanks again to everyone for your prayers and positive thoughts.
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Leftfoot ... hang in there & good luck with your surgery! Time to get that behind you. Pls let us know how you are doing.
Thanks to everyone for all the info & support. I conclude, based on knowing the lab values that would reflect a problem in this area are normal, the whole body muscle spasms are another side effect from chemo. You have described them well. They can hit anywhere or anytime, on the body, very strange. I get so frustrated when the providers give me a blank stare because they don't know & rather than say that, move on to something else!
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Forgot to mention, I begin Halaven on Monday.
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SyrMom, I really do hope and pray that you get a good run on Halaven. I was reading on the forums and noticed that nancyh got almost a full year on it according to her bio. She is now on taxotere.
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Springwatch, thanks for the link
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Thank you Springwatch. As I had not experienced bone pain for two years after diagnosis I was worried in case bone mets had started to go crazy. Now I know it's part of the course I will be able to cope.
I have been able to carry on with my twice weekly swims up until last infusion of Halaven. Hoping to be able to do so again. Not as mobile as I was this time last year and swimming is the only real excercise I get these days. Hoping to be able to go for short walks when weather picks up.
Well ladies afternoon nap beckons. Speak soon. X Helen
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Springwatch, yes, I noticed that too. I'm hoping for a long run with it, however, I've learned not to get my hopes up too much as I get so discouraged if it doesn't happen.
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Woodyb and springwatch....I am so happy and thankful that you had good scan results! Many praises and hallelujahs! Hoping that those waiting to hear results and/ or having scans soon will also get good news.
Just had treatment #12 on Wed of taxotere and herceptin. Have been on the couch most of the day. I get such a buzzy headed feeling that usually lasts through Sunday. Feeling a bit short of breath today also......not too bad if I just take it easy....but that scares me a little. I will be getting another echo on Feb 10. Hoping my numbers haven't gone lower. Since they stopped the perjeta, I am getting anxious that they may decide to stop the herceptin too.
Many prayers for those who are enduring hard treatments..side effects......progression...grrrr, how I hate that word! Even in my chemo brained and buzzy headed state.....I can lay here and pray for you all. Many thoughts go out to all of you tonight. Hugs and prayers and love to all!
judy
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Jaytee...I used to feel the same way on taxotere (w/cytoxen & herc)...I'd have it on Fri & by Tues, finally felt normal...glad you know to take it easy. How many more tx do you have...has there been that discussion? Hope your heart test is good & herceptin stays in place! Prayers for you, always!
Helen...I so want to swim...just need to find a place! A body of water is pure relaxation to me...even swimming laps, so hope you can get back into the routine!
Can't remember who mentioned Nancyh having been on Halaven...but in my mind, she is the energizer bunny, a rock star! She's paved the way for many of us & thankfully, helps when we need it. That's one reason I know you'll be just fine w/brain surgery, Leftfoot
"Springwatch"...I know why you have your name....your description of the coming of spring makes me excited!!! Our Pacific NW robins are very different...big guys...lotsa healthy worms
. Do you know the song "Robin in the Rain" by Raffi? I've sung it 4 million times to 4 grandchildren. It's my favorite & a sure fire sleep inducer!Have a blessed weekend, Friends! I know there are New Englanders out there (aka Patriot fans...I used to like them when Drew Bledsoe, my WSU COUG, was quarterback), but hoping my Seahawks win Super Bowl 49! We love our guys
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Thanks Ronniekay......no discussion of how many treatments left as yet, we are scanning after every third treatment and going from there. The treatments are working but it sure is taking a toll on me. I don't think she wants to change anything unless it stops working. Enjoy the big game on Sunday! Hope your team wins!
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My Ct of my liver was good. No evidence of cancer or at least no changes since the previous scans. That is a huge relief. It means I can stay on the Xeloda and Tykerb regimen I am on and that this course of treatment is keeping my cancer at bay. So nothing other than the brain surgery to get rid of my original metastatic site.
Thank you for your thoughts and prayers
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leftfootforward - great news! Thank You, Lord!
:-) Penny
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Wow! I haven't been on in a 10 days and so much news! Thankfully, much of it has been good! :0)
Woody - WOOHOO!!!!!!!!!!!!!!!!!!!!! I am so happy for you!! You've become a wonderful friend on this board and I am so thankful to have "met" you! Doing the dance of joy and praising God for your great news!!
Congrats to to Leftfoot and SpringWatch on your good scan results!!!
RonnieKay - did you have your scan on the 27th? Any results? I am on Navelbine also and my first scan had great news of shrinkage. Will have next scan on the 20th and get the results on the 23rd. Hoping it's still working as I have gone from 3on/1off to 2on/2off.
Ella - Welcome to our group...from your posts it appears you have a great sense of humor and a good spirit. Both will serve you well through this fun little battle we are all engaged in.
Penny - I need to be on here more often - I find that I miss your post! Your prayers are strong and constant and we all need them. My own prayers go out to all of you!
Love and hugs to all!
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Jaytee,
Thank you so much for you warm and genuine happiness for me. I hope soon we will hear good news from your side.
I have a healthy heart , but when i started taxol/hercept/ perjeta , i too run out of breath and get tired more often. I noticed it distresses my breathing for a while then after a week i am ok. I had a heart ultrasound 10 days ago and all seemed fine , and i had my lings checked also again all seems fine. I just get a very dry nose after the treatment and feel dried mucus in my respiratory tract it seems to hinder my breathing.
So just take it easy when you feel like this and don't think that it is always related to the heart but to be on the safe sode inform your MO. keep us posted. Love and prayers as always.
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Chichiiiiiiii,
I was wondering about you you haven't posted for a while, i am glad to see you are alright and i hope on the 20th you annouce wonderful results !!!
I am so happy to have "met" you all on this board and feel so blessed by your presence and constent support and most of all by your spirits and wonderful hearts. I hope we all have a "complete response moment" so we can all do the happy dance.
However , there has been some pretty good news on this board lately, like springwatch, leftfoot , RonnieKay, Penny and i hope the trend continue to join all the rest .
Wating for you good results Chichi and i will dance till dawn
))) Love and prayers to all !!! Thanks be to God !
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Hi, everybody. I started a new thread about this, but thought I'd ask my liver sisters for your input as well. Last month when they did the Y90 on my right lobe, all went well until recover, when I had to lie flat on my back for four hours. This is done to give the arterial wound a chance to clot over. The pain was worse than childbirth. When I met with the NP to schedule the other lobe I told her about it and she suggested asking the staff on duty for the procedure for sedation or pain meds for those four hours, but now I'm wondering if maybe muscle relaxers would work better? I've only needed muscle relaxers once in my life so I don't know that much about them. Opinions?
Thanks
Prayers for all,
Penny
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Hi everyone,
I was new to this forum several months ago but have not been on in a while. It is so refreshing to hear you all support each other! I have liver mets and had chest wall mets until three weeks ago when these were surgically removed.
I am not a surgical candidate on the liver due to the tumors being too close to the diaphragm. I thought I read on this forum a while ago about some of you having cryoablation on their liver tumors. I spoke with my medical oncologist about it and found an interventional radiologist at Barnes that does this procedure. The problem is my insurance won't cover it. Does anyone out there have and suggestions?
Incidently, my insurance originally approved the procedure and I was admitted to Barnes and was told right before the procedure that the insurance company made a mistake and the procedure was not covered. Does anyone out there have any comments or suggestions about that as well?
Prayers for all of us...
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I can't do this..anymore...I just was with a friend I dated 2 yrs ago..had so much fun..rode harley's and we loved each other. he Knew all about my cancer from a to z...he excepted me....we dated until I was dx in April ...2014...He asked me to come over to watch super bowl...with a new gf...he knew from 20 yrs back...I think since I couldn't make love to him ...he dump me...but still wanted me around ...god it so fucked up...it hurt...but it didn't...I am today still beautiful compared to her..but I want to be happy...why am i feeling so alone right now...I can't have sex...it DOSEN'T INTEREST ME...IS THAT MY FAULT...DO I LOOSE
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Penny, my MO gives me clonazepam aka Rivotril during a long procedure , it is a musclele relaxer , and anti anxiety, and it makes me go to sleep it helps me a lot. Ask about it . I do not see any reason why you should not take something to make you comfortable , you do not have to suffer. rivotril relaxed all my muscles . Hugs.
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Free
Freebird53,
If your friend did not stand by you during these tough times and did not appreciate you and had the guts to invite you over with his new girlfriend, well believe me than he is not worth it. It has nothing to do with you being beautiful or not , you are beautiful not being able to make love for ovbvious reason does not make you expandable. It is time you toss him aside and start your life again with someone who appreciates who you are not someone who sees people only physically. I know it is hurting you but believe me he is not worth it wanting you around is not something nice nor does it mean anything. You are not a second class citiizen and do not settle for that . Being sick does not makeyou kess valueble. Just remeber that.
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Freebird, I couldn't have said it any better than Woodylb eloquently put it. I'd honestly rather be alone during this battle then be with someone who is messing me up emotionally. That's the last thing you need. Hope you're feeling better today.
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Muscle cramping and magnesium. I read several of you experience muscle cramping and I just wanted to state that for me taking extra magnesium (400mg) daily has made the difference of tolerating femara or stopping femara. I know it is different for different people and for different treatments being taken, I am just throwing it out there.
God bless all of us!
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I"m sorry I was on a pitted pot last night....Darn Patriots...won...booo...At least I got the score right but in favor of the hawks...
Well today I woke up with another frame of mine...I need to focus on being alive...and not all the crap and drama that sometimes surround us...I have been dealing with this alone and I 'm going to stay dealing with this alone...along with my church and my Clinic...
Sorry for ratting last nite...just felt bad...for a minute...
love you all Carla
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Thanks for your encouraging words Woodyb. I am doing better now as far as the shortness of breath goes. Just had to get past those first few days after the infusion, I guess. Doesn't seem like it was as pronounced in my earlier treatments, but the effects seem to be cumulative. It's so easy to get distressed and let my mind go off in a negative direction. Going to try and go out for a little bit this afternoon!
Leftfoot.....celebrating with you on your good scan results! So happy to hear that. Chichimaine....lots of prayers for you for your scans on the 20th....we will all be thinking of you!
Freebird.....I agree with Woodyb and benjnate.....I am so sorry you felt so bad yesterday. Joining in with the others to give you a hug and hope you feel better today.
Penny.....I hope and pray that the procedure on your liver will go smoothly and much less painful than the first time. Sounds like muscle relaxers are the way to go especially if they can help you sleep through that recovery time on your back. Lots of prayers for you!
cbrogdon....welcome back....how are you doing since your surgery for the chest wall mets? Healing up well, I hope. I have not gotten to that place where we would be thinking of ablation yet. Does your insurance company give a reason as to why they won't cover it? How awful to think you had approval for a procedure and then on the day of it told it was a mistake...how cruel that was! Does the company have a procedure where you can challenge that decision...... though, just the process of doing that is so stressful too. Wonder if the interventional radiologists office would get involved and make the case for you? I have found that in my doctors offices there are some of the billing people who are much better at dealing with the insurance company than others. When my onc closed her local office, the lady in the billing office did not stay on....She was so good...I had never had to deal with the ins company, she handled everything.......I really miss her as there have been a few issues lately with some of the billings. I hope that you can get some help with that issue.....seems like there are a lot of people who get ablations done.....It's not considered experimental, is it? Praying for the best for you.
judy
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Another hug for you freebird! Rants are always okay.....sometimes you just have to get it out. It's good though that just another new day can give us a new perspective. Lots of love to you! Too bad about the game...I didn't originally care much who won....our team wasn't in it this year, but I was rooting for the Seahawks for Ronniekay....so was disappointed too! They were winning when I left the room to see a bit of Downton Abbey!
judy
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Woody & Laura .... couldn't agree with you more. I had 2 weeks of looking forward to starting a new life, following a divorce after 23 yr. of marriage, when I went for my annual mammo. Been dealing with the BC beast ever since. I can't imagine how much worse it would be if I had to deal with that toxic individual during all of this; I'm sure I wouldn't have lasted this long. Similar to Carla's ex boyfriend, my ex husband tried to throw his then girlfriend, now wife, at me, thinking it would bother me or make me jealous - NOT! I'm glad she took his attention away from me so I had less of his BS to deal with!!
Began Halaven today. Have slight headache and a little nausea, but generally o.k. There's a long list of meds that can't be taken with Halaven, like Zofran!! Ugh. So will see how this plays out!!
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Syrmom,
Good to know you had your first Halavan and still going strong , i hope it will give you excellent results. I am sorry you cannot use zofran but glad you got red of that excess weight you were carrying around for 23 years
) .Jaytee, it is good to go out from time to time just enough to change air and new ideas.
Freebird , it is ok to rant anytime you want and glad you are feeling better today.
Tomorrow i have a whole day of HPT. And xgeva i will be sleeping during the whole session dreaming of all of you getting good results
) prayers and love to all. -
Judy - Thank you for your kind response. Being turned down by the insurance company after I was approved was probably one of the worst days in my life as I honestly felt that they were playing "God" with my life. It frankly scared the hell out me to think I may not be able to get that type of treatment. The Dr.s office appealed the decision, per the insurance company protocol, and then I guess I may need to get a lawyer involved.
I hope you are feeling OK today and got out for a little while. Anything we can do to make ourselves feel better, even for a moment, is what we must do. Freebird, that includes you and all of us letting our feelings out if it makes us feel better.
Pleasant dreams and restful sleep everyone.
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cbrogdon,
I hope you issue with the insurance resolves quicly hopefully without lawyers whoch could take a while for them to get you response. I think it is very cruel from the insurance to refuse such a request, after you are not having a facial lifting. Keep us posted. Prayers and love.
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Radiofrequency Ablations on the liver for breast cancer mets is not experimental, but not done a lot. Maybe that's why you're having a hard time with the insurance coverage, cbrogdon. They've been doing them for years on colon and prostate cancer mets, and, of course, primary liver cancer. So many oncologists are opposed/unwilling to think outside the box that most of the time, bc patients with liver mets aren't even aware of the option. My first oncologist sort of waved her hand at me when I brought it up, along with chemoembolization, SBRT, and surgery, and said something to the effect that I shouldn't worry myself about all that. The oncologist I see now is much more open-minded and respects the fact that I research this stuff on my own. Doesn't make me feel like I'm trying to undermine her expertise, doesn't get offended, etc.
Prayers for all,
Penny
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Woodyb....rest easy during your treatment today.....thinking of you. I did get out and about for a while yesterday. It felt good and was a dry run for today when I have to go out. Have to go to the lab for a blood draw, then drive over to where dd goes to school and take her to a Dr appt. Dh can't go with me because of work, but I think I will be okay.
Syrmom....thinking of you too today...Hope the effects of the halaven are both minimal and manageable and most of all that it will be very effective!
cbrogdon...I hope that your appeal will come through. Thanks Penny for the info about cryoablation....I didn't think it was experimental, and I have read a lot of posts about women who have had some of these procedures during their course of treatment. If it can help get you to stable you would think that more oncologists would be open to these treatments. They are all different that's for sure, but sounds like you have got a good one!
cbrogdon, is your onc on board about the cryoablation? Seems like that would help in the appeal process. Insurance is such a touchy subject......we are so grateful to have it, but then having to deal with an insurance issue is overwhelming beyond belief! I always dread having to call them myself....it is so hard to get connected to a real person who can actually help with a specific problem. Can spend an hour or more on the phone and not get the answers you need. I am a bit concerned about my last treatment....it was on Jan 28. A few days after that I got a letter from the ins company saying that my next round of chemos had been approved.....from Jan 29 thru sometime in April. Will that one day difference cause them to deny that claim...I hope not. Since I started treatment last June, my treatments have always been on Wednesdays, every 3 weeks. There is also one treatment that the oncs office hasn't been paid for...all the other ones before and after that one have been paid. I need to find out what that is about and am dreading making that call. Another reason why I miss the lady who used to run their billing office....She would have had it sorted out by now.
Take care everyone.... thinking of you all and prayers and hugs all around!
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L
Jaytee,
Woooo i am so gla dyou went out even though a bit aprehensive about it. But look at you it did you some good. You will be fine driving do not worry, your body will tell you when you can't . I am so happy .
I had my session today and a blood test , TM still droping but slowly and my MO is very statsified , it is better for ot to drop slowly than a sudden drop. I slept like a baby during the whole time i am still a bit woozy . But feeling good. My MO is writing a paper for the medical journal about my case regarding the FISH test and the CISH test which are said to be as effective both , except my FISHcame back twice negative while IHc was positive Cish stated that i am extremely her 2+ . So are some women being cheated from the right treatment.? I would have been on palliative treatment if it was not for my her2 status changing. Thanks be to god.
Penny, my MO is like yours , he knows i do extensive research and he restpects that so we share information and decide to gether on the course of treatment.,so thumbs up to you my dear Penny and your doctor.
Syrmom, i hope your Halaven went well , and the SEs are acceptable but med tough on the cancer. Keep us posted . Prayers and big hugs.
Ronnie you are silent these days , i am sure busy woth margeaux lolll.
Love and prayers to all
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Redwolf - Thank you for the information. My oncologist made the referral for cryoablation therapy to begin with and he told me he was going to help the interventional radiologist with the appeal process. I still have not heard a thing yet. Did you get some pain relief after your Y90 procedure? Is that a relatively new procedure?
Jaytee - Sounds like to battle the insurance company as well. ONe thing we should be able to take out our plate for sure...
Pleasant thoughts...
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Oh yes...I've been in a deep depression over my beloved Seahawks....I get it, Freebird. Armchair quarterback that I am...it was the worst call ever & cost us the game...but realistically, we've always been the ones to get that amazing, unbelievable win & this time, the Patriots got it, so I'm looking forward to next year!!! Thanks for being a 12th woman Jaytee!!! I love Downton Abbey!
SyrMom & Woody & Jaytee...hope you're feeling good & ses will be gentle!
Chichi...I didn't have scans, onc thinks things are going well & so will wait a bit longer. In the meantime, getting ready for the eye dr again! They changed lenses again..and still not quite right. Hope your scans coming up are great! Two weeks on/off sounds great and my guess is you'll get the same good results! Do you have neulasta?
It makes me sad people have ins woes...it's criminal to me. I know one of our drs just got paid for a Sept visit but we don't really have to intervene. I said before, I'm sure going off chemo prompted a huge party (and maybe a raise) for my ins company! I asked my DH if our company would ever drop us cause I was costing too much. We've been on it since 1976. He said no..they can't...and then said, enough people die young so they don't use coverage...yeh, thanks honey! He had to gulp that one.
Off to dr...at least they keep changing my lenses for free
Woody...Margaux says hi! We went to library storytime today & she help hands w/another 1.5 year old...seriously melts my heart :-)
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cbrogdon - Y90 (Sir-sphere) embolization has been around a while, although its use to treat breast cancer mets is relatively new. My procedure is scheduled for Monday.
:-) Penny
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Penny, good luck on monday, may God be with and touch yoy with his healing hand. Hugs and prayers.
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Penny...I agree with Woody...God be with you...may this be another successful procedure that will heal and give you many, many years of joyful life!
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RonnieKay , i am sorry your team lostbut i have been away from the states for so long , i don't remember which team is what hehehehe i am becoming senile with my chemo brain. But you see you have Margeuax she makes your forget the world specially if at this age you are taking her to the library for reading , she will probably turns out to be a genius. Kiss her for me too and God bless you both.
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I just got my scan results - not such good news. The bone mets are growing, as did one of the liver tumors. So it's on to Navelbine for me.
Leah
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Dear Leah,
I am sorry for your results , but i got the same ones on xeloda and i moved to another one. Nevalbine works well on the liver i hope it will destroy it. Are you taking zometa or xgeva for the bones? Xgeva seem to be holding off the tumors better. When will u start on nevalbine? Remember there are still other options too. Palbociclib is newly approved for HER2- tumors. My prayers are with you . Please keep me posted. Hugs.
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Sorry, Leah. The right cocktail is out there. Pray that Navelbine is it!
Prayers for you and yours,
Penny
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I'm sorry Leah - you and I are similar in diagnosis,dates, etc., so I feel your anxiety. Lots of good comments here about Navelbine, I hope this works for you for a long time with low side effects. Keep us posted.
Laura
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Leah, Xeloda is a chemo that failed me completed, as did doxil and adria (those 2 since October 2014!!!) I'm now on to Halaven & hope something positive comes out of it as my bone & liver mets are mult. So ... hang in there! I understand how it feels. I keep reminding myself I got nearly a year of out taxol, though, so who would have thought!!
Please keep us posted on Navelbine and how you handle it. It's another possible option for me.
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Oh Leah......I am so sorry about the scan results, I know we were all waiting to hear and so hoping for good news. What is encouraging though are so many of the posts of others who tried several treatments before finding the one that did work for them. Praying that navelbine will be the one that works for you! When will you start your new treatment? Many prayers for you. Never say never and never give up.......I say this to myself all the time.
judy
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Leah...I'm sorry for this news....but navelbine worked wonders on my liver mets, so I'm hoping it blasts the liver & bone critters for you. Please ask any question you have...lots of us have experience w/the periwinkle plant. Praying for strength and healing for you...and all!!!
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Leah... I am sorry you are dealing with this, but you are closer to the ONE that will help you, hope that navelbine will be the last ONE and very soon you will report to us the good news. Praying for you and all.
Insurance approved my MRI and I am going on Friday. Funny its on my daughters Bday at 7:15 and she was born at 7:10.
What is the periwinkle plant? did someone take it? any success stories?
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Thanks to everyone for your support. It really makes a difference.
Ellamailana, Navelbine is derived from the periwinkle plant, hence RonnieKay's remark. I love to tell people who want me to try alternative (untested) treatments because they are "natural" that in the past I used an extract of the Pacific yew tree. Yeah, taxol. So now I can claim periwinkles too!
Leah
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smiling
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Leah...an interesting experience I had in Oct...while visiting my son's family in Long Beach, CA, we took a day trip to Joshua Tree National Park. Truly amazing & we met up w/a group of grad students from U of Illinois, who'd traveled over 4 months, visiting "natural wonders" in different parts of the world. A focus in their journey was human impact on plant species. I shared with them that I had just had 22 mos of chemo, derived from the periwinkle plant. I was asking all sorts of questions about their adventures, but they just wanted to hear about my treatment & were awed by it. They were leaving the next day for Costa Rica's rainforests. Thanks to the brilliant minds who tap into the natural wonders & find these things that keep us alive. Next may be the turkey tail mushroom. Studies are underway at my center, partnering w/Bastyr (a natural medicine univ in Seattle) and my onc said it may be something he'll consider for me down the road. I pray navelbine heals you!
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Leah , I am so sorry that you have had progression and I do hope navelbine does a good job for you. It is always frightening starting a new chemo because there are so many unanswered questions about how we will react to it. Side effects and how it will effect our disease.
leftfootforward, Congratulations on your good scan results!!
freebird, I don't have anything to add to what others and yourself have written about how to deal with your situation. It must have felt like a huge kick in the teeth. You can't change other people but you can change how you react to them to minimise any damage. Reading your recent posts, I think you have sorted that out for yourself.
I haven't been on for a few days as I have been struggling with the side effects of the my gem/carbo. I was SOB earlier this week. I was fine sitting and resting but sounded like I had some sort of COPD disease when I struggled the short distance to the use the toilet. I briefly considered just peeing myself but knew I wouldn't have the energy to change out of any wet clothes. That lasted about 2 days and I am feeling much better now so we went ahead with my second cycle of gem this morning. My onc asked if I wanted a blood transfusion but as I am feeling better I postponed it. I am coming up to my week off treatment and don't want to spend a day in hospital for the BT, if I am managing OK now.
Regarding navelbine and periwinkles, I have always been interested in where some of our chemo drugs come from. Halaven came originally from a sea sponge but is now made synthetically. Doxil was a bacterium found in soil and I think someone else has mentioned the relationship between the taxanes and Western yew. There is a project called Drugs from Dirt. It's not just looking for chemo treatments but other drugs as well. You can sign up and send a sample from your local area.
http://www.bbc.co.uk/news/health-30877343
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I've read that Taxol is derived from a tree, so I just googled it and found it comes from the "Pacific Yew Tree". :-) Penny
Praise God for providing science and scientists with the things and skills they need to do their job! It makes you wonder how they even knew to try nature. I mean, was it like, one day, a scientist was looking at a plant and thought, "this would make a great chemo!"? LOL
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So many medical discoveries have happened by chance. Fleming found penicillin when his Petri dishes became contaminated and he noticed that the contaminant killed the bacteria growing there. Gemcitabine one of my chemos was was supposed to be an anti-viral until someone noticed it also killed leukemia cells. Since the late 18th century, people were vaccinated against smallpox using cowpox after Jenner noted that milkmaids who became infected with cowpox were protected against the more deadly disease, smallpox. Who knows were the next discovery will come from?
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well, its official... MRI confirmed i have 5 lesions in my liver and my doctor wants to schedule a surgery
So damm scary and lonely
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So sorry to hear this Ella. I know how frightening it can be. However, I would think if surgery is possible, that is a good sign. Often times there are too many lesions or they are spread throughout the liver such that surgery isn't possible. My thoughts are with you.
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I agree with Sarah...knowing the liver's ability to heal, I wish you successful surgery & complete healing. May God take your fear & grant you peace...don't forget we're all here for you!
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So sorry, Ella. I wish you peace and healing.
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Ella, i am so sorry to hear about your liver lesions, but since surgery is possible this is not a bad sign. Most of us are not elligibale for surgery. I know it is frightening and you are alone, but know we are all here for you for support and prayers. My thoughts our with you wishing peace and healing.
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Ella - sorry to hear about the lesions, but the ability to have surgery is a great sign. Keep us posted.
- Penny
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Praying for good results & peace during Monday's procedure, Penny.
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Penny , i second RonnieKay to wish you good luck on your procedure monday , may it bring you helaing anf peace of mind . Sending you prayers.
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Thanks, guys. I'm having a lot of pain on my right side from my abdomen up to my neck and shoulder. I know that can be a sign of cancer growing. The funny part is I can't remember which lobe I had done and which one they're doing on Monday lol.
:-) Penny
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Nevermind - just read the report from the last procedure. It was the left lobe that was done. So they'll be doing the right lobe on Monday. Tomorrow I start a cycle of Xeloda - it's supposed to be "synergistic" with the spheres.
:-) Penny
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Checking in this morning.......ella, I am so sorry to hear about the lesions, adding my prayers to all the others for you. Especially prayers for peace and calm as you start treatment. It's so overwhelming getting this kind of news .....I always feel better once we start fighting it! Many, many thoughts and prayers will be with you!
Will be thinking of you too, Penny on Monday. Praying that the procedure on the other lobe will go smoothly and that you will have an easier time in those 4 hours that they have you lying flat. Praying for no pain!
Hope all of you that had treatment in the past few days are doing well. Taking it easy...resting and eating well. Thinking of you all today.
judy
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Thank you very much everyone for such a wonderful support, means a lot..
Penny, can they give you something mild so you could sleep through the procedure? ask them
Hope it will go easy tomorrow and praying for easy and happy upcoming week for everybody.
~Cheers
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Good Day Ladies:...Well Thank goodness for the warm and sunny weather in Idaho!! I finally feel good after 4 days of weakness/nausea/vomiting/exhaustion ....from my chemo treatment last Tuesday (Red Demon) A ....You know weather plays a big factor for me with my mood and mind set...and having my body feeling well of course.....
I am getting excited about next Sunday when my best GF comes for a visit from Oregon...I've know her for oh I say 20 yrs...and she is taking vacation just to come and visit me...I am so happy!!
I hope everyone has a good week...with positive results from scans/tm/etc....
I love you all Carla
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Freebird, enjoy your time with your friend and have a good time, glad the weather is helping. Hugs
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Jaytee,
How are you ? Hoping you are well and dealing better with the treatment's side effect , resting and enjoying your days. Prayers and God be with you.
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I know what you're saying Freebird! It was gorgeous in Seattle too...but I'm at the tail end of a not-too-bad, could've been worse, but still annoying cold. We had church, a vegetarian Indian buffet & nap & now time to move about. My mind was almost entirely on my sisters here at church today. Sending love, as always, with prayers for healing. Happy Sunday...and Monday, sweet Woody.
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woodylb.....I have been feeling better, always fatigued though. Dh and I actually were able to take the puppy out for a walk on a bike trail today. I have to walk much slower than I used to, but it was a nice walk. The good thing is that I could keep walking and didn't have to stop with any shortness of breath! Was very glad about that. I go tomorrow for a heart echo. Will be meeting my new cardiologist for the first time. I really liked my old Dr, but he closed his practice. The new one will eventually have some office hours in our town, but tomorrow I have to drive to the big city again. Thankfully the weather is good right now, so it shouldn't be a bad drive. How are you feeling? Does your treatment affect the taste of food to you? I am coming up on the week where food tastes a bit better...but most often I have to just make myself eat. Food smells good to me but tastes really dull. The Dr office called last week and told me my hemoglobin level was pretty low. Need to eat some iron rich foods....or they will put me on an iron pill, which is just what I need, another constipating pill!
freebird......I hope you will have a wonderful visit with your friend! Having some company does wonders sometimes. Hope your weather stays nice...that does make a lot of difference... in the winter time especially. A few days of sunshine can sure boost the mood! Glad you are starting to feel better...that adria is a tough one. Have you been able to eat? I hope so.
Ronniekay...Hope you will feel better from your cold soon! I have been lucky so far this winter as far as colds go. Knocking on wood! Talked to my daughter on the phone today and she said she had one that's been going around campus. Hoping I didn't get exposed last week when I was over there! I try to keep some zinc lozenges on hand to take if I am around anyone with a cold....it seems to help. Take care everyone and have a good week. Hugs, love and prayers!
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Jaytee...it's great to hear you had a good walk...I always say slow & steady, so take your time, enjoy the fresh air & puppy love~2 & 4 legged :-) thoughts & prayers for a healthy heart test tomorrow & so hope you like the new cardiologist, too! Downtown tonight!!!! I'm so happy Edith got her baby girl...I cried!!!
Freebird...awesome your friend is coming! I have a few good friends I haven't seen for ages & sometimes, when I worry about time passing too quickly, I think of trying to see them...I will make more of an effort!
G'night all!
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Biospheres done. All we can do now is wait and see what the next scan shows. Thanks be to God for getting us thru all this. I didn't have as much backpain in recovery because he put a metal clip on the right femoral artery so I only had to be on my back 2 hours, instead of 4. Good things happen when you give the day up to The Lord! :-)
Prayers for all,
Penny
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Glad all went well Penny! I'm very glad to hear that the pain wasn't as bad. How soon will you have scans?
The new cardiologist was very nice. The lady who did my echo was a sweetheart.....She told me she has worked for this doctor since 1999 and said she thinks the world of him. That is very reassuring. My echo wasn't bad...about the same number as the last one, so that was good too. Ronniekay, I had a dilemma last night....the new season of The Walking Dead started too...dh loves that show, so I didn't get to see Downton Abbey....hoping I can catch it another time this week as we don't have a Dvr. If something good happened for Edith though, I will be thrilled.....I want her character to find some happiness so badly!
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Ronniekay, missed you my dear friend, i hope the weather changes soon and then you can walk around and enjoy the day. I love Indian food, the turmeric in it is anti cancer lollll. I am no longer sure what is or not good for this disease. My son is sick this week from the cold which swept through lebanon when i was there. Poor baby , it is the first time he gets sick and i am not around , he s taking meds i hope he gets well soon. The weather here is nice and still good , i am thinking of asking my MO if i can go swimming at the beach, if i go i will send you pics so you can feel the warmth and the see breeze. I am praying a lot these days specially around three in the morning everything is very quite i feel i can almost touch the heavens and ipray for all of us. Lots of hugs some ray of sunshine will be heading your way soon. .
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Penny ,mi am so glad your procedure is done with less pain this time. How soon will they scan? And you are right when you leave everything up to him with strong faith he will take all your worries away.,wishing you excellent scans and wonderful results. Hugs.
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Jaytee,
I am glad your echo is still the same at least it is not worst, which means you can continue with the meds. Which blood is low the red i presume since you are talking about iron. I do not think you should take iron pills anyway usually they are not gove with chemo. I do not get why you are so fatigued how much are you getting on the reduced dose? My fulls dose was 80mg per square meter of my weight they reduced ot to 60 after my first session because it tired me so much and lowered my blood, they had to postpone the next one. At low dosage of taxol i am feeling ok. I have a little anemia but not enough to get me so fatigued, i just get a bit tired mainly because of my lack of sleep. Also the low dosage is not effecting the efficiency of the med. ask your doctor about this. The food does not taste good to me specially i cannot taste salt , so add more sices to make it appealing, my appetite is fine but i am not likng the food so much but i eat anyway. Instead of iron tr to eat liver , it is know to strengthen the blood , lentils, spinach these foods are know to strengthen it. Also have from time to time a glass of red wine , it is a lood booster and not harmful if taken spearingly. From your SEs i am guessing they are giving you docetaxel ? If so then the side effects are warranted because when i took it at my first dx it was horrible, then really the food becomes tasteless and you get tired. I am getting paclitaxel it is much kinder .
I am though and so proud of you of the little walks you are taking, and little by little is not so bad it will build up your strength and boost your immune system specially that you are breathing well. This is wonderful. I am glad you like your new cardiologue and i hope he benefits you and follow you meticulously.
Keep taking these small walks as they are good for the body and the soul and try to eat better don't weaken your body from lack of food. My love and prayers are with you and my our sweet lord help through this treatment and all God's willing will not be in vain and you will get good results. Hugs.
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Hi ladies,
Just checking in this morning and catching up.
Ella, I am sorry to hear about the lesions. I agree with others here who have said it is a positive sign that surgery is an option. I hope surgical intervention removes them completely. Do you have a date yet for your procedure?
Carla, I hope you are enjoying your friend's visit and the better weather in Idaho. I was surprised to read that you had nausea and vomiting after your last chemo. There are so many drugs out there that can control this. If it were me, I would speak to my oncologist about trying an alternative medication.
Jaytee, I hope the change in your diet helps your Hb levels. If you do have to take iron supplements, they can cause a metallic taste. Also, take them with orange juice. The vit C enhances absorption. I am pleased that you like your new cardiologist. It makes things so much easier if we like and trust our doctors.
Penny, congratulations on getting the spheres treatment done and with less pain than last time! How long do you have to wait before they scan again?
Woody, I am looking forward to the promised pics of the beach. It is no where near warm enough to contemplate doing that here but yesterday the temperature reached 53F and I sat outside in the sun for about quarter of an hour. It was almost spring-like but as it is still February, there is still time for more snow.
Syrmom, How are you doing? I think you were going for your second infusion yesterday.
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Springwatch, i promise if i am allowed to go you will get the pics
) . How are you doing on carbo /gemzar ? got the same treatment last year i was well till the fourth cycles and then all hell broke loose. Low platelets, low red blood cells and low white , one transfuion and one cancelled session the last two reduced. I hope you do better than me , my doctor told me the anemia is not caused by food ot is the med itself which emans iron will not do much. But still i ate well and got a lot of red meat and specially liver , lentils. And dark greens. Love and prayes to all. -
I'm a farm girl who grew up eating liver & onions....of course, with a whole lotta fried potatoes on the side
...you know how to make my mouth water, Woody! I've had a few bouts of anemia in my lifetime, not chemo related, but I remember being so stopped up...ugh. I actually had the shot...much easier, but I doubt that's something they'd consider while on chemo. Hope it improves Jaytee...and so glad your heart is staying strong! Yes...you'll be happy for Edith & we don't dvr either so catch up after jeopardy most nights! So happy your procedure went better and is done, Penny!!!! Now to heal!!!
Woody...hope you son is well soon...hard to study & attend classes when you don't feel well...but glad you escaped the germ!
Off to send Valentines to little people....sending one to you via airwaves!!
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Yes, Springwatch, Infusion #2 yesterday, so far, so good. It's usually days 3-5 that suck, but who knows, that might have been from the left over Adria still in my system. Hoping for a better week. Next week is my week off - yea! Keeping my fingers crossed with the neuropathy - taking L-Glutamine, faithfully.
Penny, glad to hear your procedure went well, rest & heal!
Hang in there, sisters.
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I saw my onc today and asked him was if he thought it was possible the HER2 changed (from - to +). He said he hadn't thought of it, that it was a good question and it would be a good idea to biopsy to check. So now I'll have a liver biopsy and then start Navelbine. Great, another procedure to scare me. Though truthfully, the thought of being HER2+ and NOT treating with Herceptin is a lot more frightening. Has anyone had a liver biopsy? What is it like?
I must add that I'm impressed with my doc's humility. Not only did he seriously consider the HER2 question, he also said at one point that he should have thought of it. Not a lot of docs will say that to a patient!
Leah
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woodylb.....I am getting taxotere (docetaxel). It's definitely a rough one...maybe not quite as rough as adriamyacin though. My dose got reduced by 15 mg if I remember right. The fatigue isn't so much that I am homebound or too tired to get out of bed, but it's more of a constant tiredness that makes it hard to do my normal work without feeling exhausted. A trip to the grocery store wipes me out. I am used to a much more energetic life and I miss it. When I went to have labs drawn today, my onc added some extra things for them to test for.....vitamin B levels, iron, seems like there was something else but I can't remember. On the way home, I stopped at a little meat market and got some liver. When I was a kid, my Mom got all of us to like it...sounds like she made it similar to Ronniekays Mom...lots of onions and I remember fried potatoes with it too. Dh hates it so I haven't made it for a long time, but a friend from work likes it and she is coming over for a liver lunch tomorrow! Told dh about it and he made the liver hater' s face!
My friend is going to bring a spinach salad so that will be good too. I am exactly like you, woody, I can't taste salt either.....makes everything taste so dull! Spices do help, you are right about that. Thanks for all the good suggestions. I hope your son feels better soon. My daughter has been going through the same thing at school too...lot of sickness and colds going around. Prayers for them too! Hope you get to have that swim ....sounds heavenly!Syrmom....take care and may you be over the hump of those worse days after treatment very quickly! These weeks are going by so fast...seems like I just had a treatment and another one is coming up again next week!
Prayers for all tonight....thinking of everybody.
judy
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Leah, i am so happy you thought of asking this question and it is valid . As you well know i turned HER2+ also after two negative FISH test. Liver biopsy is not scary, i didn't have any pain or sedative with it. It is a CT guided biopsy, he will choose the easiest and the least dangerous to biopsy and guided by the scan he insets a gun like needle and take a sample from your liver. For me it took like 30 min and i went home for three days i did not wash the biopsy site , there was a slight discomfort but no pain. How come they didn't biopsy from before? My doctor told me yesterday the latest european studies on cancer it shows that most cancersare mutating, normal testing is not showing the gene mutation, so we get treated as if it is the. Primary cancer . The fact is , it is the same type but with a twist which could save your life. Good luck on your biopsy . Keep us posted and hurrayyyy to your doc it takes a great man to admit he was wrong. He is a keeper.
) my prayers are with you. -
Jaytee,
Adriamycin did not bother me much , but docetaxel did it. I felt exactly like you are feeling now. Don't pay too much attention to it even though it is criplling your daily life. They cannot give it to you forever , when you stop it everything gets back to normal and you will go back to being yourself again. As for your DH well you make your liver and make him a steak lollll. But seriously liver is excelkent for the blood i ate at least twice a week while on carboplatin. But i get the motton liver it is very tasty and while in the states i ate beef liver with lots of onions like you and Ronnie said with potatoes , it is good your friend is coming over to eat with you , it will make you eat with appetite .
RonnieKay , a woman after my own heart with food lolllllll.
Good night my dear friends, love and prayers to all and a wishing star that things will get better for all of us !
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Woody, I am doing alright on gem/carbo at the moment. This week is my week off treatment and I am looking forward to feeling a bit better by the weekend. I have had 4 cycles so far and will start my 5th next week. My bloods are holding up - just. My Hb has been low and I have been short of breath especially in the week following the carboplatin infusion. My onc suggested a blood transfusion last week but I was reluctant to give up a whole day to spend in hospital. If my Hb is still down next week I will probably go ahead with the transfusion. It's doing a good job on my cancer and I would be very upset to have it pulled because my bloods were poor.
I hope your son is feeling better and you get the OK for that trip to the seaside.
RonnieKay, I don't like liver. I have tried it several times over the years and have come to the conclusion it is not for me. The way some people can't stand Brussel sprouts, which I love. My father didn't like it either but it was one of my mother's favorites, although she rarely cooked it. My mother grew up on a farm, too, so maybe the outdoor life was a contributing factor in her liking this food item.
SyrMom, I guess you will shortly know if the Adria hangover is responsible for your side effects. I hope that you enjoy your week off. I so look forward to mine. What sort of cycle on you on for your treatment? Two weeks on/one week off?
Leah, My onc makes always biopsies any patient that returns to see him with MBC because of the concern that the hormone or HER2 profile has changed. I share your concerns about not treating with herceptin if the tumor is now HER2 positive. Well done for raising this with your doctor. We need to be our own advocates. Changes in receptor status are well documented.
Jaytee, I am glad you have found someone to share your liver and onions. I can happily munch through the spinach salad, though. Now I want some.... must remember to add it to my shopping list.
Take care everyone.
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Springwatch, i got breahtless and tired too because of the red blood cells and it was after the fourth session just like you. My doctor forced me to get the transfusion he said he cannot afford to let go down further. So i listened and i had the transfusion and it helped. I hope you keep doing well specially that is is working on you cancer , as for me it got me only 20% shrinkage and they could not continue for more than six cycles . It would have been very harmful plus i got the most of it , getting more would not have made a difference.
Too bad you don't like liver lolllll it is very healthy for the blood but so is spinach and lentils so bon appetit . Enjoy your spinach salad.
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ladies ,
Does anyone of you know Rebecca, Raro on BCO? If any of you do , i am sad to report that she is now in home hospice and is not doing well. I got to know her in the last month and she is a wonderful lady , her daughter is updating her state on the thread raro update . She is attending to her mother and having a difficult time. Our prayers are with her and her family in these trying times , the prayers have been pouring for Raro for a month from around the globe. Please join in the prayers so her days are pain free and calm forher and her family.
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Hi Woodylb.......have been praying for Raro. She has been through so much the last couple of months.....I was so sad to hear she hasn't been doing well. It's good that she is with family and I will keep them all in my prayers.
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Leah- I had a two liver biopises. Mine were done by and IR and was done only with the US, no CT. I actully went to the holiday party I planned right after my biospsy so it wasnt that bad. I was a little sore but tylenol took care of it. So you can do it. Good luck
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Leah-- I recently had a new liver biopsy, because of the reason you stated. My onc told me it was time to re-check to be sure the cancer hadn't mutated. She was actually excited with the results because it hadn't changed-- still ER+/PR+, HER2-. In fact, she describes my BC as "highly estrogen receptor positive," and put me on Fasolodex as a result of the test because Xeloda was too hard on me. My tumor markers dropped 30 points after only being on Fasodex since mid-November, and she's planning new CT scans next month to look for shrinkage.
My biopsy was done with a CT for guidance. The doctor took samples from 3 sites and I was on the table for close to an hour. It's a long needle and he did a topical anesthetic first, but I still felt some pressure and a pinch when the needle grabbed the tissue samples. The weirdest thing was he warned me that sometimes people experience pain in the shoulder during the biopsy and that actually happened to me! That was worse than the actual biopsy-- LOL! There was a video screen just to my left, showing a live CT picture of my liver. I actually turned by head and watched the whole procedure on the screen. I was fascinated!
I didn't really have any bleeding or bruising afterward-- just a dull ache at the site, like someone had punched me under my right boob! I went right back to work the next day.
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Hi Jaytee,
I know she was really having hard time breathing and moving ,many times to the hospital. Yes she went through a lot. It breaks my heart , i hope she finds peace and god be woth her family.
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Woody, I am very sad that raro/Rebecca is now on home hospice. I posted on her daughter's update a few days ago sending my prayers for her and her family.
I am having my spinach salad today.
Queen of Hope,
You wrote that you had a new liver biopsy. Does this mean it is a second biopsy since you were diagnosed with mets? If this is the case, how long was it between the two biopsies?
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Thanks, everyone, for your experiences with liver biopsy. It's going to be US guided, not CT. The biopsy will be on 23 Feb. I'm trying not to think about it too much so I won't stress so much. Yeah, right.
At least I have a lot of good stuff to distract me before that. This Monday is my DGD's "Prayerbook Party". In first grade in the religious schools when the kids have finished learning the alphabet and are on their way to reading they receive their first prayerbook. The "party" is the children doing songs and dances for the parents/grandparents. My DD said she's had a preview since my DGD has been singing them for weeks.
On Tuesday I'm going up north for 3 days. There is a support organization for women with cancer here called Beit Natan. Every winter they have a 3-day retreat. I've been in the past, and it's a wonderful program. There are all kinds of sessions that bring us together, and it's wonderful to connect with other women going through the same things I am. It's also wonderful to be spoiled by the hotel!
Navelbine txs will start 26 Feb. The onc wanted the biopsy before any tx started. Since I stopped Xeloda last week I'm getting a tx break. No objections from me. It's not so long that I worry about it but long enough that I'll be without SEs for a bit.
Leah
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Leah, Enjoy your chemo break. You have so much to look forward to especially your granddaughter's party! The retreat sounds very attractive.
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Hello All - Interesting comments about 2nd biopsies to see if receptors have changed. I'll be 6 years in June, and since Taxol only worked 6 months, may be time to re-check. To Leah and those getting a week off, this was my week off and I definitely appreciated every minute. QueenofHope - I love your screen name!
Can anyone suggest foods that are good for liver - besides liver?
(My liver-haters face Jaytee!) I know spinach, but is it true that cottage cheese and apples are good for the liver too? I searched on the internet and not getting solid answers. And turmeric - I've heard conflicting reports as it can contradict the effects of chemo. Has anyone read otherwise?I start back on Adria tomorrow, I'm trying a new attitude. I wish all of you a good weekend and little side effects!
Laura
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Leah , have a nice chemo break , and enjoy you time with you grandaughter . The retreat seems as a very nice idea .
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Hi Laura ,
When I was diagnosed with liver mets I did a lot of research on diet and 2 of the best foods are garlic and onions. Also, broccoli , kale, cilantro and artichoke hearts.
There are also foods that are hard on the liver- alcohol, caffeine , excess sugars, trans fats and artificial colors.
I don't have any research about turmeric , but I took it when having taxotere and I had good results.
Hope this helps
Laurie -
Benjnate.....I did a search on bing for 'liver healthy foods' and apple's were on the list. Didn't see cottage cheese, but some of the other foods were beets and carrots, avocados, dark green leafy vegetables, grapefruit, lemons and limes, onions and garlic as lauriesh shared, Olive oil, green tea, walnuts and a few others that I can't remember. Turmeric was on there too and they called it the livers favorite spice. I know I have always heard its good for inflammation and is thought to help prevent Alzheimer's as they see a lower occurrence in countries where they use a lot of it. Liver is definitely not everyone's cup of tea! It's always been a wonder to me that my mother had all 4 of us eating it...her story was that she told us it was ham when we were little....it worked! My husband on the other hand just remembers his mom fixing it and telling him that he had to eat it all....He said he dunked it in ketchup and swallowed it whole, probably after sitting there a long time! That was a bad food memory for him! Hope all goes well with your treatment tomorrow...Will be thinking of you.
Leah....Hope the biopsy goes well with little discomfort. Let us know when you get the results. I wonder how often the her2 status changes? In the meantime have fun at your granddaughter' s party and enjoy the retreat. Sounds like it will be a very nice 3 days. A chance to make some new friends and find support! Sounds wonderful!
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it all sound like Mideraeanian diet. My doc is very big on this.
Went to see liver oncologist today, but something went wrong at the surgery and he had to cancel all his patients today. Oh well anxiety more anxiety ... Xanax to the rescue ... Have anybody tryed mothers worm?
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I love green vegetables like kale, broccoli, brussel sprouts and spinach and eat them almost daily. I think all of these are good sources of iron. I also eat lentils and chick peas fairly regularly so I am confident that there is enough iron in my diet without the liver. I don't eat soya beans which I think are very high in iron, too. For me they are the vegetable equivalent of cardboard. I will eat tofu as long as it is well seasoned and prepared.
Ellamilana, I have never heard of mothers worm and had to google it. The search engine wasn't much help. It came up with a fishing lure called, mother's worm and a quack medication called mother's worm syrup. The latter was sold as a children's worming syrup but made all sorts of other claims as a purgative, a cure for feverishness and restlessnesss. It doesn't seem to have been on the open market since about 1906. If someone is making this still and selling it under the counter, I would be very careful about taking it.
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drinking my stuff for ct scan
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Kjones13
Prayers for a clear scan! When do you get your results?
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Springwatch, thank you for searching, i made a typo, its Mother's wort, not worm. Its homeopathic remedy for anxiety, seems to help
Kjones, praying for you, only good things happenning today
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Ladies, the liver is not for liver health it is for low RBC , artichokes are the best for cleansing the liver speically if you boil the, and drink the water , as well as drinking a bottle of water 1/2 a littter as soon as u wake up. Also a cup of luke warm water with a dash if lemin fasting before food in the morning. A lot of citrus while on chemo is not advised because it may effect the efficiency of chemotherapy. However pomergranade juice freshly squeezed is very good.
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Kjones, wishing you good results .
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Hi Ladies,
I will post here and start a new thread because I need all the help I can get. I was diagnosed bone mets 12/2013 and in nov/2014 I had my first progression to liver and dr took me off tamoxifen and put me on Femara and a shot to shut down ovaries. I had liver ablation 12/2014. I had my scans this past Wednesday and today my Onc told me there is more progression in liver, 3 new spots showed up and she is suggesting we ditch hormonals and go back on chemo and start xeloda. As u can imagine my balloon of hope has deflated again. Is this the end for me? How many have been here and xeloda worked and got them to stable? The IR is suggesting a Y90 procedure?? I told my hubs first and then I told him that I'm turning to my peers on bco.
Margie
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Garlickbread,
I am sorry about your progression, it is very frustrating and disappointing when you believe you are starting to deal woth stage IV then suddenly you're crushed by another progression. But it is not the end. There are many options xeloda is one of them or traditional chemo. While xeloda worked very well for some people , it did not work for other , the same as chemo. It is enough that your doctors find the right combination for you. But do not think it is the end. Most of what you used till now are anti hormonal. Chemo works very well also in controling the disease and sometimes at dessimating it. I hope your doctor finds the right one. Focus on getting well and get ready to fight. Paryers and love.
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Margie - I've had two liver ablations and now one Y90 procedure (actually two - they do one lobe at a time). My oncologist and IR kind of work together to decide what's better at the time of progression - chemo or targeted treatments. I've had progression and regression (praise GOD) and my next scan is on 3/25 and we'll take it from there. It's good to have a medical team that communicates. I hope you know that you can have ablations and Y90's more than once. There's also chemoembolization and SBRT. You've got tons of options ahead of you. It's just hard being in that stage where your team is trying to figure out what to do next. Once you've all decided on a plan, you'll feel better. Prayers for you and yours.
- Penny
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Garlick, I am sorry about the progression but if the hormonals are not working then it is time move onto chemo. I read somewhere and maybe someone reading this can jump in with more information, but I think that Y90 spheres and Xeloda work together synergistically. In other words, the Xeloda may make the cancer cells more sensitive to the radiation delivered by the spheres.
It's not the end for you, it just the start of a new chapter.
Ellamilana,Thank heavens it was just a typo. When I looked it up I was very concerned. I have never heard of motherwort but as long as you have run it past your team and it's helping you, go for it!
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Hello ladies...well question...does anyone have pain in lower right side of the adomen...my lower part of my adomomen down to my femurs...have been really painful during the nite and early morning...after pain meds taken..I'm find..
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Margie......I agree with the others, there are lots of options out there for treatment when anti hormonals stop working. Certainly understand the fear though! Adding more prayers that your doctors will find the right treatment to knock those spots back!
Kjones.....keeping you in my thoughts today for good scan results.
ellamilana....so sorry that your appt got canceled. After getting news of liver mets there is enough anxiety, you sure didn't need any more! Was this the appt to schedule the surgery? Hopefully they won't make you wait too long for another appt.
Woodylb...thanks for the reminder about the citrus! I wasn't thinking about that last night when I looked up the liver healthy food list. It was a general list and not specifically for cancer patients. I know that besides the chemo...so many of us are on other medications too and grapefruit especially can interfere with many of them.
I had a little scare today.....our temps have really dropped in the last few days and its freezing cold. We took the dog to get neutered yesterday and for about a week we have to take him out on his leash so he won't run and break his stitches. I was outside with him today and suddenly got short of breath..had to get inside quick and sit down. It didn't take too long to feel better but it scared me. I didn't get that way at all when we took him for that walk on Sunday when the temp was in the high 40s. I am so ready for spring and yet it sounds like we are going to be colder than normal for the rest of Feb!
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Thanks Ladies for all of your suggestions about things to eat/drink for liver health. I jotted them down and put on my fridge to help me remember. But it really is a basic Mediterranean diet.
Kjones, best wishes for good scans. I hope you don't have to wait long for results - that's the worst.
Garlikbread, I will join the others in saying that it really is OK. I had progression from bone to liver 2012 and am still doing fine. I'm not going to lie - life was easier when it was just in the bones and I was on anti-hormonal meds. But now it is just a new norm and we go on with life.
Freebird, are you swollen in that area, or just tender? Or downright painful?
And now a quick question - today was the first day in 9 months of solid chemo that I was not able to get it due to my neutrophils being 1.8. I don't know why this is bothering me so much, but it really is. Have you ever skipped a treatment and everything was OK and your markers didn't go up like crazy? It seems like the major issues in my cancer life I gloss over and accept so readily, then the little things just set me off.
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Freebird, I was just diagnosed with liver mets in early January. What led me to the Dr. was severe right abdominal pain running to by back and up into my right shoulder. That lasted a couple of days then improved to just pain with a deep breath, sneeze, or cough. That improved greatly over the next few weeks. Then I had another attack that was similar to the first about 3 weeks later. My doc says the liver was swollen/inflamed. He can't explain why it comes and goes. Pain meds have worked well both times but it really wiped me out for a few days.
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Benjnate : it's mostly when I am sleeping...the pain is sharp and goes around my lower back.
Sarah: I wasn't given chemo (red demon) this last week due to my counts but was given my normal mthly Faslodex bone booster shot...forgot the name of it..so my se effects with the pain have been for a couple weeks...and so did my OC say that it's inflamed..I had rads alot in my right hip area...the sapped around that area so probably why I get the pain...but once i take my meds...i'm good during the day...
I bound out of chemo...last week too because I have a friend that is coming in from Oregon to visit...so i didn't want to be ill..I'll take the treatment again on Tuesday...
A another note...had a panic knock at my door last nite. it was my youngest daughter..i just had a feeling...her hubby got them a room for the nite downtown for a romantic dinner and drinking...so they could have a break from the kids...and it sure didn't turn out...i just felt it wasn't...they got into a fight where she was intoxicated and he wanted to leave and she wanted one more and that was it...he got in in car and she tried to stop him and ended up using her fists on the car window to get in she looked a mess...OMG...I can't leave this earth knowing that she has a issues with alcohol...she comes from 2 parents that were addicts...but have been clean for 20 yrs plus...but she told me so much about there relationship...it saddens me...especially telling her he will take the boys away...
She has known him since high school...a long history...they were to young to have children especially 2 so close in age...God bless those boys...it's not there faults...
She would not be able to survive without me here and not be with her hubby...he's the world to her...I am really scared what would she do if that relationship would end...
I never believed in Happy Valentines Day....I never had one...now it's going that way with my daughter...I don't want this for her...But what can I do....L&R Carla
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Freebird - I have two thoughts on the pain: kidney issues since it radiates to the back? Or eating something greasy that the liver had a hard time processing which is why it could be acting up - just my thoughts. Hope you figure it out soon. Sorry about the family drama and hope it settles down soon, Maybe it's stress that is getting to you?
Jaytee - I get your weather a day or so later, and I find it so hard to breathe in general in these extreme temps. All day tomorrow is supposed to be below -0-, you're probably having that today. I'm staying in, that's just crazy, especially for folks like us!
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got results back....still stable!!!! So that is two full years on herceptin, perjeta, tamoxifen, and Xgeva that has kept me stable! Praise God! Next scan is scheduled for September.
Thank you for all the prayers. I haven't read since my last post yesterday, so I need to catch up. Much love to you all!
One more thing...these last 4 months I have had the worst depression of my life. I was rock bottom. I read this thread and several others. You all held my hope for me until I was able to get back to a point where I could hold it for myself. That is what I love about bco. My sisters!
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Garlikbread - I am so sorry to hear about your progression. There as a lot of options out there and I will be praying for you.
Ella - I agree with the others that the fact surgery on your liver is an option is very good news. I hope it will all go well.
Leah - I am happy you have a chemo break before starting Navelbine. I pray this therapy knocks the liver mets out for you.
Penny - I am so happy to hear your biosphere procedure is finished and pray your next scans will be clear.
Insurance question - I am still fighting my insurance company who only wants to cover chemo/radiation/surgery. How does one even go about fighting the insurance company for coverage for other effective treatment/procedures?
Prayers to you all.
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kjones....that is great, great news about your scans! Doing a happy dance and much praising the Lord for your good news. I'm glad that you are feeling better and more hopeful...been down that depression road a time or two myself.
Freebird.....I had more pain back when I was diagnosed with liver mets last May. Mostly on my upper right side, but I do remember some pain at night that seemed to radiate around to my back too. I had a few sleepless nights. My onc said that my liver was swollen. With treatment, it is no longer swollen and I haven't had the night time pain since then. Hope you will get some relief from the pain soon...Will be praying
Benjnate....did you start getting any snow this evening? We had a lot of wind today with blowing and drifting snow. I drove to a meeting in the morning and the roads were clear, but by noon when I left for home, there were periods of near white-out conditions! Was a nerve wracking drive home. Both my parents were born and raised in Pa.....they taught us how to drive in the snow! If that is heading your way, sounds like another day to just stay home! The snow should be done here, but it's going to be bitterly cold....think I am going to be staying in too!
cbrogdon....I think it would be the doctors who could make the best case for you to the insurance company. Back when I was first diagnosed our ins did not want to authorize a breast mri. My onc pled my case to them and they eventually approved it...it made the difference in my treatment as I was originally scheduled for a mastectomy first but the mri showed the tumor to be very close to the chest wall and it was changed at the last minute to chemo first. I hope that your ins situation gets settled soon so that you do not have to wait too long for the treatment to start.
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Kjones13 - THANKS BE TO GOD! :-) Penny
My next scan isn't until 3/25 :-)
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Kjones13, Wonderful news on the stable scans!
freebird, The only time I had bad lower right abdominal pain I had appendicitis. It was misdiagnosed as period pain. The right ovary and appendix lie very close together. I also had it from a UTI but this was accompanied by a fever. A final thought, I had arthritis in my right hip. One of the symptoms was groin pain. It was worse after resting or sleeping. I hope you daughter is sorting out her problems. You have so much to deal with already without this additional stress.
On the subject of pain, does anyone have experience of pain in their ribs? I have pain in my back on the right hand side. My scans two weeks ago did not show any metastatic involvement in this area. My onc checked my lungs and they are clear. My lung mets are on the left not the right side. It's getting better but still uncomfortable. It is only relieved partially by pain killers and NSAIDs. All thoughts welcome.
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Kjones - Congrats! That Herceptin is some amazing stuff. I hope it works for you for years and years. Hopefully you can take this time to sort out your depression issues and get back on track. Spring is coming and you live in a beautiful area, hang in there!
Jaytee - just crazy last night with the winds and I have a snow covered front porch that usually never gets snow. -2 right now, my dog keeps begging to go outside since it's so sunny, she thinks it's balmy out there. She lasts about 5 seconds and runs back in!
cbrogen - I often read of people trying to fight their insurance company, but my theory is this. Most of us don't know how to as it takes vast knowledge of procedures, coding, etc. They should have people at your facility doing this for you that are trained to get to the right person to plead your case. I am never told when my facility does have to fight for me, they just do it right away and sometimes it gets mentioned to me. Good Luck, I hope it gets worked out quickly.
Hope everyone has a good Sunday - off to read the paper.
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Springwatch -- A few days ago you asked how much time had passed between my two liver biopsies. It was about 4 1/2 years. I had the first in Feb. 2010 the day after the doctor saw irregularities on a CT scan, and then the most recent was in Oct. 2014.
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Hi there!
I am the voice of my mom on this website, she was diagnosed with mets to her bones and small spots near her liver in July '11. She was good on hormonal treatment until September of last year when they showed progression. Since then, the scans have shown more spots on her liver, more spots on her bone, bilateral pleural effusions and most recently this past week, a small pericardial effusion. She has been on Gemzar, no luck with that; then Taxotere, no luck there either & now on Taxol, although from the looks of things, it doesn't seem to be working.
Needless to say, it is all pretty discouraging. We are in the process of getting a second opinion for her at a prestigious cancer center in our city that also participates in clinical trial. The hit or miss of finding an effective treatment (hopefully there is one!) is frustrating.
Hoping on all hopes that we find a good treatment that will shrink these liver tumors and help these spots on her bones! -
Sarah, I am sorry to hear about the problems you are having finding a chemo that works for your mother. I had good results with taxol for 6 months before it failed. Then had Xeloda which failed absolutely - did nothing and I had progression. I am now on gem/carbo which is working at the present time. Because we are all individual with our own unique cancer profile it is difficult to predict what will work and what will not. Cancer treatment is moving towards more personalised therapy with analysis of cancer genes but we are not there yet. I hope the taxol works but if not there are others that your mother's oncologist can try.
Thanks Queen of Hope for the feedback. My first biopsy after being diagnosed with mets was a year ago and I think my onc should re-biopsy again as my liver mets seem to be behaving very differently to my bone and lung mets. I think I will start a thread on this and see what other people have had done.
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KJones,
Congrats on stable ! Praying it will stay stable for a longtime and eventually disappear.
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Sarahsusername,
I am really sorry your mom's cancer seems not to be responding to some chemos, but there are other options , whoch i hope your mom's oncologist will find soon. Hoping for the right one for her. God bless.
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Springwatch,
When my cancer on my second dx showed some movement on the her2 front it showed equivocal results, a FISH was performed and came back negative. Then i took the same sample taken from my liver had another pathology done on it in a other center it showed that it was Her2+++ but again the FISH showed negative. Meanwhile, i had decided to do a genomic testing in Germany on my cancer, since it was behaving very aggressivelh for an ILC which is supposed to be indolant , the CISH test came back positive for HER2 . I was running out of options, they started me on HER2 targetted therapy plus taxol, whoch thanks be to God gave me after three cycles complete response. I am very grateful, and blessed but sometimes maybe it is worth to check if things seem abnormal.
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Ugh...had typed a bunch and DD called...sometimes I lose my posts, sometimes not...this time-gone
Kjones..soooo incredibly happy for still stable! I could feel the tension melt away!!! Now, to keep that feeling and run with it!
Garlik...I am sad that your scans showed progression. There is a "right" treatment, and as you know from being on the boards, loads of options...so have faith & stay strong! I detest the thought of hearing the P word, and being on h/p/femara, I feel so good, but there's that pesky feeling of wondering if it's enough. I want to be just like Kjones 2 years from being off the hard stuff...I'm almost at 4 months!
Sarah...I'm hoping they find the right regimen for your Mom! I was lucky that Navelbine worked on my liver right off the bat. You're amazing to be her support...and I hope a second opinion shows good options.
Ella...I've not heard of a liver oncologist. Let us know what you think of their expertise.
Can't believe it Spring!!!! I've had the exact same pain for about 4-5 days. Right side, lower rib in the back...a dull ache. If I rub it, it's much worse (so quit rubbing it, right?). I'm trying to attribute it to muscle strain, playing w/grandkids, tag at recess w/grandson's class, etc. but why is it on my liver side (insert sobbing voice). It doesn't hurt terribly bad.. just the dull ache. I'm not scheduled to see onc for 3 weeks but I'm thinking I may see my gp....or take an ibuprophen...which I rarely do. I hate giving cancer so much credit...maybe it's a muscle strain!
Leah...can't wait to hear all about your Grandaughter's prayer party!!!! These are things that make us thankful for life & hopeful for many more moments as these! I got to share our grandaughter's baptism experience with her religious ed class when I was in CA. Seeing hope & faith in childrens' eyes...priceless!!!
Chemo brain...was it benjnate that couldn't get chemo due to low neutrophils? I didn't have Navelbine if my count was 1. I would've had it at 1.8. Maybe it's different for each chemo but I was unsold to have 2 treatments about a month apart & I cried, but it didn't affect any of my counts. At that time, my onc added neulasta to each day 8 of my 15 day cycle and never had a problem after that. I understand how frightening it is, but now I can say...enjoy the break!
Freebird...you need a spa break...or a visit w/a girlfriend-woohoo for that!!! I would hope your daughter can get some help with her health/alcohol dependence, especially if she has a man who she loves & loves her back...and two precious kids! And I hope that help isn't just you!
Jaytee & benjnate...I'm just seeing your weather on tv and say enough already!!! Hope spring comes soon & you can warm up!
Jaytee...I've had a few bouts of the racing heartbeat...none in subzero weather, but are you staying hydrated? Seems it gives me trouble if I don't. Hopeful thinking...waters an easy fix!
XOXO
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Hey Ronniekay, it has been a while glad t hear from you
) quit thinking every little pain you feel is cancer ughhh! Femara causes a lot of pain in different parts of the body. Ask me about it i used it for three years. This pain i feel it too and the the side of the rib and the same side of ky breast cancer and it is dull also but nothing ever showed on scans related to this pain. Love and prayers. -
Thank you Woody...I just need to have you remind me every now & then to not freak out
. Feeling better...XOXO -
I am glad you do my dear Ronnie
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Thanks Woody for the feedback on your biopsy. I am going to push for a biopsy of my liver mets.
Ronnie, I have the same fears that you are experiencing regarding the pain being near the site of my liver mets. I hope this is just rib muscle inflammation. It has been going on for well over a week although it is better than it was at the beginning.
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Hi everyone. I've not posted since my first cycle of Halaven. I've just completed my 5th cycle and had results of ct scan. Halaven has not worked for me at all. Significant progression and I've been told options are at an end. I have been offered a trial drug AZD4547. This is given orally along with Letrozole for 12 weeks.
I am having liver biopsy next week because I too asked my onc if maybe liver tumours could be HER2. My lung mets have remained stable for 3years and my bones have hardly moved so why is liver not responding.
Has anyone heard of this trial.
Thank you all just for being there. I'm really scared at the mo. Glad of all the feedback on biopsies.
X
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mutherflush...I'm sad to hear Halaven didn't take care of the liver mets...and glad they're doing a biopsy. Bestbird posted an interesting study about the number of cases that found tumor status changes when they appear in other spots. I don't know of the trial drug but hope for many options to be open for you. I can imagine how you're feeling...good news that your bones & lungs are stable...will be praying for answers on the ct scan!
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Mutherflush, i am sorry to hear Halaven did not work on your liver, but glad your bones and lung mets are stable and hope they stay this way , so the doctors can focus on finding you other options. I know how it is to hear and feel the fear of running out of options. But a lot of drugs are coming out and being tried, i did not hear about the drug you have mentioned and i hope and pray it is the right one. I know however, of palbociclib along with another drug was newly approved and is used for he2 negative who did not respond to other chemos , you might want to check this with your onc . I hope you soon start on a new journey one of many with this disease with a new lease on life. Hope and prayers are with you
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Mutherflush. I am sorry about the progression. I hope that the liver biopsy allows you to explore other alternatives. Have you asked your oncologist about revisiting chemos that may have worked for you early on? I know some people have returned to a taxane after a period of time. You don't mention it in your bio. but have you tried carboplatin? Sorry but I don't know anything about the drug trial you mentioned.
RonnieKay, How is your pain? Mine is better but still not disappearing fast enough. I have had it almost 2 weeks now.
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mutherflush - just read about the trial. Sounds pretty good. If you feel up to it, I say give it a try (after your biopsy I assume). Let us know.
- Penny
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Mutherflush, I think the biopsy is a good idea and am curious to hear the results. I've heard good things about the trial your onc is talking about so I hope the same for you.
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Same here, Spring. I had h/p yesterday and the nurse said to use heat, but also reported it to my onc. The heat helped a bit at the time last night, but the ache returned. It's constant. I'm on day 6....2 weeks...ugh. Are you taking ibuprophen?I forgot to ask how my blood was yesterday so will have to wait for their call tomorrow for TM's. Hoping for our muscle strain to heal :-)
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RonnieKay,
I am taking naproxen, an NSAID. I have been on it for nearly a year for my bone mets. Onc and GP let me control my own dose as long as I don't exceed so many mg/day.
Had my gem/carbo this morning and my bisphosponate infusion. The latter almost always increases the pain in my bone mets, temporarily. If the pain doesn't change on my right side I think I can rule out a met to my rib. I don't think there is one anyway as this started shortly after my last scan.
I think it is just a muscle strain that is slow to heal because of the chemo,
My onc is on vacation so I don't know my tumor markers this week. He likes to tell me himself. I know my Hb was very low and they had to phone him to get the OK to carry on with the chemo, which we did. If it is still low next week, it will mean a blood transfusion.
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Well a very very frightened morning for myself...early calls from nurses and doctors...My tumor markers have gone up...even on the most strongest chemo out there (Red Demon) they call it in the chemotherapy world...Well this chemo is not working as planned..so cancer is progressing rapidly...now have to have another PET scan to see what the hell is going on...with the cancer...then will probably will be put on 2 different types of chemo plus blood transfusions...because my blood counts are always low...so getting clean fresh blood will help...who knows...I trust my doctors...but oh boy...I really have to stay strong and pray for a miracle....Love you all..... I need you all more then ever!! *****TEARS*****
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Dearest Freebird,
Stay strong, it is frightening, my heart is pumping, but rushing to pray for you, stay positive.
Mutherflush, when you ask for biopsy, ask them for chemo sensitivity test. I am hoping to get it when I meet with liver surgeon and discuss my options, hopefully he will be able to operate, but my appointment is postponed again to next Thursday... xanax to the rescue
Hugs to everybody, lets try to stay positive
~e
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I have not been here for a long time. I had surgery for a tumor in my spine back in 2006 and had a mastectomy in July of 2007. I had had a breast lump for a while, but was too busy taking care of my husband, who also had breast cancer, MS and multiple other problems, and didn't take care of ME. He passed away in 2006 and I finally went to the doctor's with severe back pain. The tumor in my spine was dx as metastatic breast cancer . Over time, I have felt very well. I had 3 Cyber Knife treatments in 2007 and was on Femara for several years. I was being seen by my oncologist and a orthopedic surgeon, who was a cancer specialist. After 5 years of Femara, it had run it's course, and also was getting Zometa as an infusion. I developed the jaw bone problem from the Zometa, so was taken off of that and put on Faslodex. All along the orthopedic doctor was watching a small lesion in my spine and in 2013 some changes were taking place in my spine, so I had 3 more Cyber Knife treatments. Then, I developed a compression fracture right near the lesion that they were watching. Cyber KNife greatly reduced the size of the lesion and I have had relatively minor back pain all along, Ever since I had the first surgery back in 2006 , I had difficulty walking and still have to use a walker. But, I feel good and don't really have any big problems. However, last week I had a PET scan, which I have been getting every six months. Have not had any problems except for the lesion that they have been watching all along. However, my oncologist called me in for an appointment today and told me that the PET scan showed 2 liver mets. He has stopped the Faslodex and is going to start me on a chemo pill, which I don't know the name of and also a bone injection once a month. I had to have blood work done today after which they will order the chemo med and get back to me as to how to take it, when I need to see the doctor again, and give me an appointment for the bone injection. Needless to say, I am a little concerned, but I don't have any symptoms of any kind right now. The PET scan I had 6 months ago showed nothing, except for the place in my spine, which had remained stable. So, this new problem has just developed in the past 6 months. I hope I have remembered everything, as it seems like so long that I have been dealing with cancer.. Most of the time I don't really think about it, as I have felt fine all along. And, I still will deal with it as best as I can and try not to worry too much about it. I will be 81 in May and outside of the cancer, I am pretty healthy and still take care of my own place and do for myself. I try to keep as active as I can. Have difficulty walking really slows me down.. My blood work is good. My tumor marker number went down almost to normal (41) after the last Cyber Knife treatments. I have blood work done every 3 months and the number has been going up a couple points the last couple times I had the blood work. Last time it was 51, which I know isn't that bad. I have been reading some of the postings here about the liver mets. I still have a lot more to read. But, I do feel encouraged by what I have read. As I told my son today, I feel very fortunate to have done as well as I have over the past 8 + years and I am realistically aware that I know I will eventually die from all of this. But, I have real good doctors and trust them. I have to see the orthopedic surgeon on Monday and am anxious to hear what he has to say. Sorry for the long post, but I wanted to try to include everything up to this recent dx. I plan on coming back here a lot just for the information that I can find out about and to get some encouragement.Joy
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Life to me does feel like it is ending with this dx....one thing after another...is happening to me...and to beat all ...i get a disgusting email from my oldest daughter in regards of how she feels about my illness...she is sorry that I'm ill...but anything that goes along with it...she doesn't even care about...what i'm going through etc...history there...but I had to lash out and put a stop of her making me feel terrible about how she feels about her up bringing and life until she was 18...my other two children were there...they don't understand what she is even saying sometimes...they gave me permission due to my health and sanity to just let it and her go...and I had to...she has been toxic in my life since she has been an adult...and I don't need that now..when I am fighting for my life...and at this pt in time...I am fighting for my life since the calls i received this morning that the red demon is not working...I am just alone and scared more then i have ever been....OMG god please!!!
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Freebird,
I am very sorry adriamaycin didn't work for you and i know how scary it is to know your makers are rising. But do not panic , some cances really do not respond to Adriamycin it does not mean they will not respond to another kind of chemo. You are only on the second line chemo and still have plenty to try. So please, take a deep breath and focus with your doctors to get better and get the right treatment.
Your daughter isn't she the one who was drunk last time and had a fight with her husband? If so , you should not give what she says too much attention. If she drinks often then you know that alcohol changes people and make them detached completely from reality. I do not believe she hates you but hates the disease, because maybe she is scared of losing you , even if she is an adult. Give yourself and her time for both of you to calm down so you can eventually talk.
Right now focus on yourself and on getting better and God's willing you will. But you need to keep your inner strength and get ready to fight yet again and again against this disease. For this you need to be hopeful and strong to be able to beat it. Having your tumors markers rise does not mean you are going to die, it means the cancer is active again and rising and your doctor will change therapy. My prayers are with you and don't be hurt from what your daughter says , be sure she does not hate you , she is just lost and eventually she will come around.
Love, hugs and prayers are with you , keep us posted.
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Joy78,
I am sorry you joined the club of liver mets, but you are welcome. You sound like a strong lady who delt with cancer perfectly well and held your ground. You seem surprised that the liver mets showed six months after the last PET. mine showed exactly six months after my last scan before my second dx. They were many and not two only, till now i had no symptoms and my blood work is perfect. Liver mets can be with or without symptoms. However, it seems your doctors have decided already on what chemo to give you and the shot for the lesion on your spine. Hopefully soon you will start them and get good results. My prayers are with you
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Miss Woodylb...no it's my oldest daughter we have a history... not the one that had a drama episode over the weekend...:) it doesn't matter...my journey is mine...and I will not let anyone intrude on it...I just need you ladies to help me through this troubling time...the rollercoaster sucks...
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Woodylb, thank you for the nice welcome and for your encouraging words. I plan on still staying strong and get through this next "bump in the road"..And Freebird............ my thoughts go out to you as you deal with no only your illness, but family troubles besides. I pray that you can stay strong and get past all the negative things that your daughter has said to you. You have to keep thinking about yourself. My thoughts are with you as you travel this road.
Joy
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Sounds like a lot of prayers are needed out there! For unexplained pains, treatment options, trials, encouragement, lessening of fears.....you are all in my thoughts tonight. Hang in there everyone. Joy....you have been through so much and I agree with Woodylb, you sound like a very strong woman! Hoping that your Drs will find the right treatment to zap those liver spots. Freebird....joining with the others to lift you up and give you encouragement. Hoping also for you the right treatment to be found.
I just had another treatment today...was supposed to have it yesterday and I was halfway there on a snowy morning, when they called me and and said one of the chemo drugs did not come in. It was definitely a better driving day today, but my regular onc was not there and I was the only patient in there today. Think I got a good cat nap in though...needed that cause the decadron has been making it hard to sleep well the last couple nights. Dh is going to be able to drive me over tomorrow to get my neulasta shot...I am glad for that. Will probably spend a lot of the weekend on the couch again..but will be thinking of you all. Take care everyone, be strong.
Benjnate....stay warm! We sure can't seem to get a break from this freezy weather. Our puppy is the opposite of yours, he loves being outside and rolling around in the snow...He doesn't seem to realize how cold it really is! Wish he would just go out, do his business and come back in!
Spring is only about 30 days away.....that gives me some hope! -
Can't say it better than Jaytee & Woody...love to all...peace & rest. XOXO
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Freebird and Joy - I admire both of you and will keep you in my prayers. This roller coaster ride stinks.
Jaytee - Have you ever tried having your husband giving you the neulasta shot? I get mine through a prescription delivery service and my husband gives me the shot the day after chemo (in instances where I'm on a treatment that calls for neulasta). But my oncologist is over an hour away, so it's worth it.
Prayers for everyone, every day,
Penny
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Freebird, sorry if i sounded in any way bothersome to you. I just wated to tell you to take care of yourself for the time being and know we are all here for you for support . Yes the rollercaoster sucks you are right but somehow , we always find the strength to pull through and you will too.
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Jaytee, i like Penny get my shots done to me by my husband heheheheh and he gets yelled at everytime. I hope your shot will keep your blood under control so you can get your treatment. Stay warm. Love and prayers.
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My husband would probably be terrified of giving me a shot! Were your's that way at first? I am going to ask my nurse if anyone there does it that way. Since they closed their local office, it is just about an hour's drive now depending on the time of day. I should be keeping a mileage log, dh said some of those expenses are deductible....Just more details to keep track of! sigh! I
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Jaytee, I do it myself. Its only scary the first time, but really no big deal. My nurse trained me
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Thanks Ella....I am going to ask them about it.
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Jaytee, my husband was in the red cross so he knows how to give this shot as for me i hate needles and i wouldn't accept for them to teach me. But it is actually given like the insulin shot for diabetes , people lesrn to do it themselves.
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Well just got a call from my OC going to start next Thursday on Halaven (Erbulin)...Can I get some advice and se on this treatment please...Thanks... and for all of you helping me and others to stay focus I love you with all my heart...Carla
Any information would be appreciated...
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Carla, check this thread, it may get you the information you need. Prayers and love.
https://community.breastcancer.org/forum/8/topic/7...
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Freebird...I hope Halaven works wonders! I know many have been on it on the boards. Praying for you!
Jaytee...I always got my neulasta shot right after chemo-Navelbine, so no going back the next day. The one time I did neupigen I had to go in for 3 days but never Neulasta. They told me they'd changed protocol since I'd had it in '09...maybe worth asking about?
Still nursing back...better tho. TM's from Wed came back good so...less stress
TGIF...anybody feel like that besides me??? SyrMom...how are you feeling?
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Thanks RonnieKay
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Freebird, I hope that this new med will be very successful. Hope this has eased your mind a little bit. My thoughts will be with you.The nurse navigator called me today and got all my prescription information and I will be getting Xeloda. She had to get in touch with the pharmacy company as it has to come from a special source. Not all pharmacies stock it. I think she said 3 pills twice a day for 2 or 3 weeks,(not sure about that) and then off a week. I found a thread on this site about different ones who have been on it and a lot of information about it. I also found a site with a lot of testimonials and it sounds like it is very successful. Lots of side effects, tho. The main one that most people mentioned is the hand and foot dryness, peeling, redness and general soreness. And, diarrhea was another one. Most of the others were the general s/e of most of the treatments. The diarrhea will be the one that will worry me the most. When I get nervous, I usually will have it. Then, I worry about getting somewhere and having an accident and that starts a vicious circle. LOL Someone mentioned to get in a stock of Immodium. But, the nurse was very nice and said she would go over everything with me when I get the medicine. I also have a transportation problem. But, she also told me that that can be worked out also. I have wonderful family support, but do have a hard time arranging rides to doctor's appointments. Blood work I can have done on Sat. mornings with no problems with getting a ride. My oldest son's wife has her own business and she can get off most of the time, but there are times when it isn't a good time for her during rush times.There is a county bus that I can get at certain times, but doesn't always work out with the scheduling of my appointments. But, my 2 daughter-in-laws have told me that it will all work out. So, I do feel a little less stressed tonight.
The doctor had also mentioned an injection of a bone supplement. And the nurse told me that would be Xegeva. A few years ago, after I was on Zometa for a long time, I got that jaw bone necrosis and that is when I was put on the Faslodex. They had mentioned Xegeva at the time, but it also causes the jaw bone necrosis. So, I mentioned that to the nurse and she said she would have to talk to the doctor and see what he says about that.
I live in Central Maryland, about 30 miles west of Baltimore, and they are calling for more snow tomorrow. Today, it never got out of the teens as far as the temperature goes. They are predicting a pretty good amount of snow. I am so sick of the cold and the snow. My son and I were supposed to go visit my 2 little great-grand daughters this afternoon and take them all out for supper, but it was just too cold to take the girls out and for me, also. I was so disappointed as I have not seen them since Christmas. They live about an hour from me. The oldest one is 2 1/2 and the baby is almost 3 months. They are so cute.
Hope everyone will have a good week end.
Joy
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I started out with xeloda when I was first dx back in April 2014...I had 3 rounds...17 days on 7 days off...until the se of the diarrhea caused me to have a perforated bowel... I almost died from it.. it caused a infection..I have a history of diverticular disease...So I even continued after having 2ft of my colen removed and a colostamy bag...then I refused to due round 4 cuz it was making me feel life less...I felt like i was dead...so I told them to either give me another treatment...cuz I refuse to take this xeloda...it was a very bad experience for me...
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Freebird, I am sorry to hear that you had such a bad experience with Xeloda. My thoughts continue to be with you.Joy
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Hi to all! Been an absentee again for a while, but glad to be back on. Had another scare that I think will turn out alright. Went to a followup with my regular doc and he said "Oh, when you had your chest CT scan from pneumonia, we notice multiple nodules on your thyroid and one of them is 2.6cm." Really???? Geez...so I have had an ultrasound and a fine needle aspiration and am waiting for the results. Always something to add to the fun! Had my scans today to see how the chemo is working on the liver mets and will get results on Monday. I don't have a bad feeling about the thyroid nodules...you know how you get that gut feeling when something is about to go wrong? Don't have it with this, so keeping my fingers crossed and trusting God that this is just something benign. If it gets too big, they will remove so that it won't interfere with talking and swallowing. My onc says it would be super rare for breast cancer to metastasize to the thyroid, so am hanging on to that, too.
Glad to see that others are having such great results..WooHoo!!! We are the warriors fighting this battle with spirit and hope. Love to all...will update on Monday evening after scan results are back!
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Freebird,
I too had a bad experience with Xeloda. I'm one of the few that had a rare reaction. It actually caused my coronary arteries to spasm and cut off flow to my heart. I had three "heart attacks" within a two day period...will never take Xeloda again!!! I know it is working for alot of people, but it's definitely not for me.
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Chichi, i see you have been busy lollll. I am glad you are feeling ok about the thyroid , i believe it is begnin also , and since you have a good feeling about it then it must be nothing. i do hope nevalbine will give you excellent results , it has worked for a lot of people. We missed you here Chichi so do not forget to pop in monday to give us yourscan results . Crossing my fingers they will be good and my prayes are with you. Xoxox
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Joy78,
I took xeloda not long ago , unfortunately i did not work for me. But i did not have a lot if problems while on it. It gave me constipaton instead of diarrhea lollll and my hands and feet were a bit dry but ok . I also take xgeva every 4 weeks till now i have no problem with it either. While xeloda did not work for me completely , i say completely because it has some kind of mix response which my doctors did not like and consiered a failure. But xeloda did wonders to others . You can find a thread here it is called " all about xeloda" whoch will be helpful for you. It is taken twice a day and off one week. They may increase the dose later.wishing you good luck on the new drug and prayers it will do wonders for you.
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Thanks, Woodylb. I have been to the "all about Xeloda" thread. Thanks for mentioning that.I am going to give it a try and see what happens. I have read that most patients do have good results from it. So, we will see how it goes.
I had written a long message and it went out in "cyber space", so I will just get back later.
Joy
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Joy..Your post went to cyber space-mine printed nothing, so I'll try again. :>) I'm so glad you can take xeloda at home & worry only about check ups w/your doctor, since transportation is hard...but I'm glad your DILs have assured you to not worry. Sometimes taking the worry equation out is a huge relief! You can do this...and I send my hope that ses are mild-or non-existent!!! I'll have a bone scan soon to see if I need to add zometa for strengthening & the thought of jaw necrosis scares me a bit. I have very good teeth & I want to keep them!
Chichi...absolutely not what you expect nor want to hear...stupid lumps elsewhere! My DS had uterine c and at her final check up after the hysterectomy, the surgeon told her the same thing...lumps that needed us. She's having her biopsy next week. She's in very bad physical condition so any procedure takes a lot out of her. I know what you mean about having that feeling...I usually had right-on feelings, but bc has messed w/my talents a little bit! Still...praying for good news!
I so wish the blasted cold would ease up on the eastern part of the US! I can imagine you're all welcoming spring....already!!! There are crocus blooming here & loving the early birds. We have a few resident eagles in the neighborhood & I love seeing them.
Have a great weekend all...whether resting, playing, watching tv, cherishing good days! XOXO
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Joy - Just wanted to let you know that I loved Xeloda. I didn't look or feel right for the first couple weeks but once I got used to s/e and my body got used to it, I was on it for a full year. I really hope it works for you as it is one of the meds that patients can go on again down the road. Good Luck.
Good Luck with the new meds, Freebird. I think of you often and really wish for you serenity and strength, both in your personal life and your medical life. This journey sure is not easy, is it?
Being a easterner, I'm used to bad weather...but I'm waving the white flag!! 6-8 inches of snow today, but at least it's a balmy 13 degrees. Better than the below -0- temps we've had the past couple days. Just crazy! Thank Goodness I still have a high school senior at home that can shovel for me...
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Woody,
Thanks...missed you all, too! I promise to update Monday evening.
Joy78...I didn't mean to discourage you about Xeloda. It works very well for lots of people and I pray it will for you, too!
RonnieKay...Thanks for your prayers and my heartfelt ones are going out to your DS. I know when your general health is not good, all this is much tougher. I have emphysema, so the chemo and tests, etc. make it worse. But, we take it as easy as possible and battle on!
Benjnate...hope the warm weather comes soon. My daughters and grandkids are all in the Pittsburgh area and the temps and wind chills have been below zero for so long there. School has been cancelled numerous times...too darn cold. Here's to SPRING!!!
Happy weekend all!
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OMG benjnate...DH and I grew up on the eastern side of WA state...a different world weather-wise from the "balmy" western/Seattle side. We had Weather there..not as extreme as yours but snow & holy crap cold. DH was the youngest in the family and when he was in college, 60 miles away (at Gonzaga, ranked #3 college bsktball, sorry..we're sports nuts...from Seahawks to college ball), his mom would call him on Sat mornings to "get up & come home...your dad can't shovel this snow!" Yep..60 mi drive in snow to shovel snow. So, make sure next year your baby doesn't go too far away so he can come home to shovel snow
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RonnieKayy and benjnate, I thank you for your very encouraging messages. I really do appreciate your comments.I talked to my sister-in-law a little while ago and she always wants to know how I am. I sometimes hesitate to tell her things, as she kind of has a way of making mountains our of molehills, but I decided to let her know about this newest problem. Right away she wanted to know if these new spots were related to "the black spots I had in my mouth a while back". At first I didn't know what she was talking about, but then it hit me, that she meant the jaw bone necrosis. After trying to get through to her that I did not have " black spots in my mouth " and not related to that problem at all. She gets things mixed up a lot, and that is why I am always hesitant to mention anything to her . But, she is so good to me and has always treated me like a "sister" instead of an "in-law" and we are very close. And, this pertains to all of my SIL's. I was an only child, so I married into a big family and we are all close. But, I am closer to this particular "sister". Anyway, I got her straightened out. I know most of my family truly don't understand my whole medical history and it just seems like too much trouble to go into trying to explains everything. Even tho, my family are very supportive, I don't think they fully understand everything. And, I just have a tendency to kind of keep things to myself. Just gets tiring trying to make people understand things. I think the fact that most people, when they hear "CANCER", they right away think the worst.. And, that is sure not the case. We all are just "living with Cancer". The general public just doesn't realize what treatments are available and how far the medical field is advancing every single day. I had a nurse tell me that there are so many new drugs and treatments coming out every day. I remember reading that eventually, cancer will be treated as a chronic disease, just like Diabetes or Heart Disease. I have a great little pamphlet that I picked up in the doctor's office called "Guide to Metastatic Cancer....Moving forward with hope. It is a Health Monitor Network publication. It is just so encouraging to read.
I have rattled on enough. It is still snowing to "beat the band".. At times, I cannot hardly see out the window. Not sure how much we are supposed to get this time. Glad I am staying put, all bundled up in my nice warm, fleece robe. Am reading a good book on my Kindle so will get some lunch and then curl up with my book.
Have a good day.
Joy
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Here is a link to the little pamphlet I mentioned about. Hope it works. You can flip through the pages by clicking on a little tab on the right side of the page. -
I have had the BEST week. As I told you, on Monday I had my granddaughter's Prayerbook Party. Well, a few days before that another DD called and said my other first grade granddaughter had hers on Sunday. So of course I went to that, too. The children were adorable, and they are all so excited to have their VERY OWN prayerbook. The retreat I told you about was also wonderful. The hotel spoils us, and the various support sessions and activities were really good.I came home much less anxious and able to face the biopsy (sort of) and the new chemo.
Of course, as a former English major I can tell you that "less" is a comparative term, so "less anxious" doesn't mean not anxious. So I'm calling tomorrow morning to ask if I can take Ativan or Valium before the procedure. Yeah, better living through chemistry.
Leah
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Leah
I asked that question before my first surgery, they said they prefer I take it, they like relaxed patients. Xanax works for me
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Leah...I'm happy you had a wonderful week!!!! Two first grade grandaughter's!!!! Aren't they just so sweet
. Tell them their "aunties" around the world are proud of them! And how nice you were spoiled at your retreat . I'm praying for lots more special events in your life -
Leah, It sounds like you have had a lovely time this past week! What special moments to share with your granddaughters! The retreat sounds like bliss.
My sympathies go out to all those dealing with the adverse weather. I hope it lets up for you soon. We have had a week of good weather here but now it is breaking down. Still mild but lots of heavy showers and high winds in the forecast.
Since yesterday morning I have been having a lot of pain in my hip. I had to phone my daughter to come around as I went upstairs to use the toilet and couldn't get down the stairs again. She was not best pleased as she had a lot of work to do and succeeded in making me feel worse. I wish I didn't have to phone her but I was in trouble. I am going to call my onc tomorrow and speak to him about scheduling a consultation with the surgeon who inserted my femoral rod last year. Just wanted to know if he had anything to add. I am taking paracetamol, naproxen and today I have my final dose of dexamethasone which should help with the inflammation. Also, using stick on heat patches and microwavable heat pads and they seem to be helping. There has been no change to the pain in my back so I am pretty sure this all related to my leg.
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Leah, you sound ,like you had a wonderful time and came back refreshed . Good luck on your biopsy and i hope you will feel less stressed withsome calming medication. Keep us posted. My prayers are with you.
Springwatch, i am sorry you have to deal with bad wheather and pain. Hopefully, you will soon find out what is the problem and get treated to become pain free. Hugs.
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Springwatch, Oh no! I have a two story house too and got sudden hip/upper leg pain about 2 weeks ago. Watching me get up and down the steps was quite comical until I got on meds. Long story short, tumors in that area, but that awful Adriamycin finally started to kick in and I'm feeling a little better. So I guess it's really not that awful
My Onc talked about starting me on radiation and that may still be down the road, but for now I don't need to use the walker anymore so we'll see. Good Luck to you and your hip pain.Can I just say - 30 degrees in Central PA at that moment!! A heat wave, lol! Thanks for all of the shout outs of support!
Leah - When you're lying on that table tomorrow for the biopsy, just keep thinking of those beautiful grandaughter's faces. And if/when anxiety starts to take over, gently push it away and bring those little faces back into your mind and keep them there. You've got this, girl.
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I like that visual for you, Laura. Sending love & hugs for a smooth procedure & helpful news!
Oh Spring...I'm sorry for such pain & I'm glad you'll talk to your dr tomorrow...will wait to hear if they can see you soon. It's all concerning...and that there's no pain relief can wear you out. Is it possible that you're feeling your DD is more frustrated than she is, because you're feeling helpless w/pain? There are some times my kids ask for help & tho there are things I should be doing, I help out. I always try not to show that...but it may be a maturity thing. Think of the years you were your DD's everything...and call her when you need to....and don't feel bad
. Sending XOXO -
Kjones-
Beyond thrilled with your scan results!!! That is so amazing!! Doing a little happy dance for you!!!
Hugs-
Lindsey
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On the subject of pain, anyone had a back spasms lasting more than a couple of days? I vacuumed either Tues. or Wed. and on Thurs., wham! Been in utter agony since; can't drive, nothing! Friends stopping by to help with stuff that requires bending, etc. Tried Lidoderm patches, Lortab, Tylenol, nothing helps (can't take ibuprofen cause of chemo); today I remembered I had some baclofen from when I had radiation - that has helped calm things down just a little. Of course my biggest fear is a fx & I hope to goodness not. Back in precancer days I'd load up with anti-inflammatories and eventually be o.k., along with the help of a chiropractor, but can't do either now. My spine is full of mets. Have chemo tomorrow, so I'm sure it will be addressed one way or another. But curious if anyone here has had days of spasms before getting any relief. This really sucks & is scary as h*ll.
Regarding Xeloda, did nothing for me except give me a bad case of hand/foot. However, many women on the Xeloda thread have had very good luck with it and some have taken it for over a year & remained stable!! So you never know!!
Regarding Halaven, there are 2 great threads: "Halaven-Day 1" and "Havalen What to Expect" (yes, Halaven misspelled). I've read it all & it's helped immensely.
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SyrMom...I know on chemo, when I went all out cleaning, I spent days recovering & had spasms mostly in my legs. One time my knees bled from mopping 3 tiny rooms on my knees. I don't have spine mets...but I can imagine how much pressure vacuuming would put on your back. I know you want to do normal things...but prob time to take a break from those jobs. I'm sorry, hope treatment goes ok tomorrow, and they will put your mind at ease that you will recover
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Freebird, Sorry that the adriamycin has not done it's job but I have my fingers crossed that Halaven will turn things around for you. Sorry I have no experience of this chemo but I have been told that it might be in my future.
Regarding you eldest daughter, in your shoes I would try and ignore her behaviour. You have enough to deal with. I am one of three sisters. Our middle sister had a troubled relationship with our mother. Myself and my other sister do not really understand why she became like she did but her treatment of our mother was just awful. She blamed our mother for most of what has gone wrong in her life while taking no responsibility for her own actions. I cannot be sure if that is the situation in your case but if it is try and ignore it. It is not about you.
Jaytee, I hope you are managing your injections OK. There is really nothing to them once you have done a couple yourself.
Joy, Sorry you have had progression with liver mets. If there are two discreet lesions maybe they can do radiotherapy. It is worth asking. In the meantime, I hope the Xeloda works for you. It did nothing for me but I have heard some people get a very good run on it. We had a lady on this side of the Atlantic who got 8 years out of Xeloda following progression to her liver. As I said it doesn't work for everyone, myself included, but for those it does work for it works very well.
Chichi, I hope you get clear results on your thyroid. I had was diagnosed with nodules about 14 years ago. They were all benign thankfully and the doctor said that even if they showed cancer the cure rate for this type of cancer was very high. As that was 14 years ago, I am sure things have much improved since then.
Leah, What can I say but good luck with your biopsy today. I hope it all goes well and possibly gives you another line of treatment to explore.
Benjnate, Well it is 41°F here today so if I do step out the door I won't freeze or fall on any ice or snow. I do hope the weather improves where you are soon. That message goes to everyone else experiencing bad weather at the moment. I am still watching for signs of spring!
It seems a lot of us are suffering with back and leg pain at the moment.
I have an appt to see the surgeon who put in my femoral rod nearly a year ago but not until Thurs. evening. I am seeing my oncologist on Thurs morning so I should be getting any input from him before that appt. My painkillers are not really helping. It hurts to walk on it. This morning I woke up and it looks like I have half of Beyonce's butt stuck to my own backside. Definitely some kind of inflammation, but why?? I hope it is something easily relieved.
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Spring...I think you should try to get in before Thurs...especially if you have that much swelling (envisioning Beyone's skimpily clad behind!). Please
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I wish I could get in sooner but it's wait until Thursday or go to ER. The way I see it is the surgeon who did the op. has the best chance of identifying what is causing the problem. I feel ok apart from the hip pain which is stopping me getting about. I am laid in bed at the moment as it seems that lying flat causes me fewer issues. I sat up all day yesterday and my backside really swelled which made moving difficult and very painful. Not so much swelling when I lie flat
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Hi Springwatch - I'm going through some crazy hip/thigh/knee pain too, 3 days after chemo. And I agree that lying flat gives the least amount of pain. Which is disappointing because I actually feel good otherwise and could get something done! In reading your post, I'm wondering if you are going through a lymphedema issue in your leg/butt since lymph nodes are in the groin area. Yesterday I took a Oxycodone and I would say it only decreased the discomfort by about 1/2 at most. For me, I really think it's the effects of the chemo giving me neuralgia, although there are tumors in my hips and upper thighs. Good Luck today Springwatch, I'll be thinking of you when I'm lying around playing endless games of Solitaire on my tablet....
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Well, I got through my woozy weekend after treatment...feeling a bit stronger today finally! I asked about the possibility of giving myself the neulasta shot on Fri and the nurse who was there gave me a look as if to say...'why would you want to do that?' I did not get a chance to talk to the Dr yet....so still don't know if that is a possibility. The nurse was asking about our local hospital...the county we live in only has one hospital and they stopped accepting our insurance last year. We saw a story in the paper a week ago or so that they are going to start taking some policies from our insurer again .......so if that happens and they get added onto our preferred provider list again I may be able to go over there to get the shot. Haven't heard any more about it though as yet. That would save us a lot of time and gas money!
Leah......I am so happy that you had such a good time at the seminar and with your darling grand daughters! Hoping all went well with the biopsy.
Thinking of everyone......springwatch, I surely hope that you will feel better soon. After being stuck in bed for most of the weekend, I know how badly you must want to be able to get up and around. I have a terrible memory of the time my Mother was sick back in the 90's. I was going over to pick her up and I was impatient with her that day and I think I made her feel bad. That memory just burns in my mind sometimes and I would give anything to change my reaction and words that day. Perhaps your dd was just having a bad day last week. Hope things will get better and you can get some relief from the pain.
Going to go get myself dressed...spent wayyyy too much time in my pajamas the last few days! Take care everyone.
judy
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Morning ladies, I agree with Jaytee that a lot of prayers are needed for us all right now, and I continue to pray for all of us. Right now, I am looking for information from anyone who has had the cryoablation procedure on their liver tumors, and what insurance company do you have. Actually any procedure other than chemotherapy for metastatic breast cancer as my incurance company, Healthlink, is telling me that they will only cover hormone and chemotherapy for me. I am getting ready for the second appeal process and also need any advice about the appeal process as well. -
Wow...what a Monday I had...In the ER again...I am under quarantine due to a Highly contagious intestinal infection called C Difficile Colitis...will it ever stop...my immune system is so low...that I'll catch anything...Well...start another new chemo Thursday...I hope they find something...Going to have a blood transfusion also...Another fun full week for me... Oh boy!! Have a great day...
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feeling determined. -
Freebird - sorry to hear about your C-Diff. It is quite contagious and that's why they have you quarantined. Prayers thar it will improve very soon.
SpringWatch & Benjnate - hope you will both get some relief soon from the back/leg and hip pain. It's bad enough dealing with chemo SE's...surgical ones really stink! Prayers for pain relief and ability to get back up and around.
I got my scan results yesterday, Monday, and they were great! The tumors in my liver continue to shrink so the Navelbine is working!!! Woohoo!!!
On a bad note, it seems I may have gotten an overdose of Navelbine yesterday, because I had apparent artery spasms again and had heart rate go up to 150...another ride in the ambulance to the ER. They say my heart is fine and did not find any blood clots in lungs/chest, so we are pretty certain it is another reaction to the chemo. I had to stop taking Xeloda after three days because I had three "heart attacks". I talked with my onc's PA today and she is checking to see if dosage got messed up. Also a possibility that it was pushed too fast. I really want to stay on Navelbine because it is working so well on the liver mets. I will meet with onc on Monday before my next infustion...praying that they can just reduce the dosage a little and push it slower.
I did have good news regarding the FNA on my throid. The nodules are benign and I don't have to worry about them! Woohoo again!! lol
Woody - haven't seen you on for a couple of days. Hope all is well with you, my friend!
My best thoughts and prayers to all!
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freebird, I am so so sorry you are in hospital and feeling unwell. I hope the antibiotics will work quickly and you will be home again soon.
Chichi, congratulations on the great scan results!! Are you continuing with the navelbine?
We have fixed things here so I don't have to use the stairs until Thursday. I can't manage them and I am better off in bed. I can get up and use the toilet but even that is a struggle. I hope there is an easy solution. Sick of solitaire and day time tv
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Spring...counting the days til you can get an answer & hopefully a healing answer to the swelling/pain. Glad you were able to set things up so there's less walking..but I know it must be so frustrating...do you have HGTV? Mindless home decor...I love it!
Chichi...so happy navelbine is zapping those liver mets!!! I can't believe a center could make a mistake on infusion. My place does triple checks. I got it over 20 min...but don't remember dosage. Hope there's an answer & solution to that...sorry for scary moments
but thyroid news is fantastic!!Jaytee...woohoo for feeling better. I know the feeling of getting dressed being a big deal! I watch Grandaughter Mon & Tues & on chemo, I'd have her, chemo Wed, spend the rest of the week trying to play w/grandsons & pretty much be on the couch the rest of the time. Fatigue is a bugger & hard to accept...mentally! Did you ask about neulasta the day of chemo? Hoping the hospital closer will be able to give the shot!
Freebird...c-diff is serious stuff. Hope you're comfortable in quarantine...and they're taking good care of you. Is is localized? What are you starting Thursday? I pray your body heals quickly from the infection & treatment is kind to you. It's a good thing you'll be watched closely.
Cbrogdon....good luck on approval for the liver procedure...hoping someone has info for you!
Woody & Penny...in my mind...and everyone is in my prayers too.
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chichimaine......yay for good scan results and so glad to hear that the thyroid nodules were benign! Sorry you had to make that trip to the ER though. You have been through a lot finding that treatment that is working....seems like a little smooth sailing wouldn't be too much to ask! Keep hanging in there!
freebird....oh dear....on top of everything, now c-diff! I wish you well and hope the antibiotics will get it under control. Have the Drs said anything about taking a good probiotic to help restore the good flora to your digestive system? Sending many prayers your way.
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Leah...thinking of you & wondering about your biopsy...may be another day before results?
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freebird - so sorry to hear about the C-diff. You'll beat it in no time, have no fear.
chichi - Thank You, Lord! Great news on the scans!
Just catching up on the thread. Prayers for all.
:-) Penny
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Chemo went off without a hitch on Monday, thank goodness. Will make my third infusion of Halaven - so far easier to tolerate than Adriamycin! Thank goodness.
Update on the severe back pain/spasms. Good news was NO fracture, thank goodness!! I was scared out of my mind. So for pain, I'm now on baclofen (anti spasmodic) and allowed to take ibuprofen for 3 days only (600 mg x 3 a day) (lortab & Lidoderm patches did nothing) . It's finally kicking in & pain is decreased from 9.5 out of 10 to 8/10 & think it will be less tomorrow!! I agree, think the chemo makes us very vulnerable to muscle & nerve pain/spasms, etc. Now need to find help with vacuuming - not easy! I have 2 cats, so have to try and stay ahead of the shedding! However, been very fortunate to have 2 friends step up & drive me to appts & grocery store this week as I could not drive with the back spasms. So hang in there benjnate & springwatch, hope you get relief & answers real soon!!
Freebird - sorry to hear of your c-diff, good news is the meds they use to treat it are usually very effective in getting rid of it, so hang in there.
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C-diff is awful! Freebird, I hope it resolves quickly. I know there is someone else dealing with it now but I don't remember who (yeah, chemobrain).Just know my good wishes are wih both of you.
The liver biopsy was awful. Local anesthesia for that procedure is a joke.
Navelbine starts tomorrow. One of the women on the retreat has been on it for a few months - she said it was one of the easiest chemos she's been on, with the only SE being fatigue. Heck, all my txs have given me fatigue so I know I can deal with that. Right now I'm just dealing with a minor case of new-treatment-nervousness.
Leah
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Syrmom - have you tried "cleaning for a reason"? I have not tried it myself, but I've heard good things about it.
The website is http://www.cleaningforareason.org
:-) Penny
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Wow, so many updates in the past 24 hours, where to begin?? I'll start with the C-diff, Oh dear Freebird. There is a stage 4 woman, Anne Silberman, who writes a blog "But Doctor, I Hate Pink" A couple years she got C-diff and wrote in eloquent detail about it's effects. It actually freaked my out at the time and I really hope the antibiotics kick in quickly and you get some relief. BTW, she is currently in remission and doing great, so hang in there Freebird.
Glad Navelbine is treating you kindly Chici and hopefully you too Leah and Halavan for you SyrMom. Good to know that there is a better life after Adriamycin...have I mentioned how much I hate this stuff? LOL
Seems like everyone else is doing well, thinking of you all today.
Laura
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Penny, yes, unfortunately, no providers in my area , but thanks for the reminder - this could always change in the future.
Laura, yes, I don't miss Adria at all; however, after failing Adria & Doxil within couple of months of each other, leaves me with less options, so that part is scary. Just hope the Halaven kicks the liver mets out!!
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Oh no Leah...sorry about the biopsy
. I probably misled big time. I must've had better drugs. I did Navelnine 22 months...Sue did almost as long. It zapped the mets and was very tolerable for me. It's a bugger on white counts, which is prob the worst se, neulasta takes care of that. I did weekly for almost 6 mos...then 2 wks on, 1 off. It did the trick on my liver mets. Sometimes I'm nervous w/out it. Hope it treats you well & the mets-terribly!!!SyrMom...hope you are on the road to feeling stronger! Glad for no fracture...but I know how debilitating the spasms are. Did you read the article by the gal from Hollywood (acquaintance of Bestbird, passed recently), who said we don't fail treatment...treatment fails us. Go Halaven, go!
I'm going to the gp for my back. Just won't quit irritating me. Minor compared to others but I just want to hear IT'S not rearing it's ugly head again. Twenty-six months...longest since a dx in almost 6 years so...hoping.
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Hello ladies,
I have trying to catch up on your latest news...
Springwatch and Benjnate, i hope you soon get relief for the hip pain .
Jaytee, so hpy you're getting dressed up to get out and i hope you get an easy way to do the neulesta without much hassle xoxoxo:)).
Leah i hope Nevalbine will work for you as well as it did for others . Keep us posted on your biopsy results.
Chichi yayyyyyy a happy dance for you on your scan results !!! I hope nevalbine will continue to shrink those liver mets to oblivion. ((HUGS))
Penny i am glad you procedure went well and hope to hear good news soon God's willing.
Syrmom, happy your chemo is going smoothly and better than the others fingers crossed it will continue to do so with good results.
My thoughts and prayers are with you all .
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Well it's 3 days on antibotics 3 x a day...have been home...sorry I worried you all...they didn't want me in the hospital..due to how infectious it was...wouldn't be good on the OC floor...So I have no more diarrhea.. they pain level is low...it was very painful...I start Halaven...I believe they told me last week...but I had my CAT scan Monday...may have changed...see my NP tomorrow...OC is at a conference...but has been calling me every morning...He is so nice to me..and cares... and my NP she is totally awesome...They want me to finish the antibiotics before they start me on any probiotic...I have been eating Activa yogart...highly recommended...Let's just say I feel about 50% better..but still very tender in my lower abdominal area...and it doesn't help I have a colostomy too...
Thank you to all..I never can remember all your usernames/names...but you all know who you are and those that support me and reach out...I don't know what I would do with out you all...Love to all Carla
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Freebird,
I am glad you are feeling better, Ativia is very good for the colon and it puts back the good bacteria which you lost from the infection.and chemo. I always eat when i get in trouble. The funny thing is that my dictire requested the test fir C. Difficile for me this week and it came back negative. I hope you put this behind you soon so you can start your treatment. Paryers and hugs.
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OT. It's been so cold here. My husband is a supervisor with our county road department and has to be in at 4am because they're calling for MORE snow. I do not like summer, but right now I'm dreaming of spring. What's YOUR weather like?
- Penny
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I need to go back to hospital for an operation on my leg. The femoral rod in my leg is bent probably because the pin securing it at the top has sheared. Need a Mars mri first to be sure. The upshot is that the fracture site has opened and this is what is causing all the pain.
Catch up with everyone soon too tired and just took a handful of pain killers
Despite the couple of days delay I am glad I waited to see the top guy. He has offered an alternative operation which would remove most of my upper femur including the fracture site but he needs to consult with my onc to see if they think I would tolerate it with the chemo. The alternative op is a major, major hip revision. The first op is a straight forward replacement but runs the risk of it happening again
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Springwatch, what a dilemma! Major major op or smaller one with a possibility of eventual failure? Two not very pleasant possibiities.Well, if we want to talk about frustration today was it. I was supposed to start Navelbine - or so I thought. Onc left a note for secretarial staff to call me to delay until next week - he wanted more healing time from Monday's liver biopsy. Unfortunately instead of sec. staff seeing the note, a volunteer saw it and CLIPPED IT TO MY FILE. Yes, indeed, and then said file was put with all the other files of patients having chemo today. When I showed up the secretary pulled out my file and was baffled (to say the least) at the note being there. To complicate matters my onc has been out sick for a few days so they had to get him on the phone to ask what to do. I also was having mild pain/tenderness in my liver from the biopsy and didn't know if that was normal healing or a problem. So another onc, after consulting with my doc on the phone, examined me (normal healing, thank G-d) and said that if I really wanted to start the chemo today I could but it was both his opinion and my onc's tht waiting until next week was better. So I'll be starting next Wed instead. I did see the secretary speaking very seriously with the volunteer. That's a mistake she won't make again.
Biopsy results should be 2 weeks. Until then, I'm reading up on Herceptin.
Leah
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Springwatch,
I am so sorry you have to go yet for another op and like Leah said what a dilema between both op. I pray they choose the right one and pray and hope it would last.
Keep us posted , lots and lots of prayers heading your way.
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Leah,
Maybe it is for the best you didn't get your nevalbine specially after the biopsy. The thing is i didn't get my herecptin/perjeta neither this week. The onc called the night before and told me they did not deliver the perjeta and till now we are waiting. I am worried the protocol is broke and this is my fourth week. So hang in there and have a nice weekend.
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Leah, I think woody is right. An extra week for the biopsy to heal maybe a good idea. No excuse for what the volunteer did. It is very unsettling when your treatment plan is disrupted. I hope that the liver biopsy gives you new therapies to try.
Woody, you thought the hospital had a better ordering system. I will give them the benefit of the doubt, maybe it hasn't happened to them before.
I still need a lot of feedback on the alternative up. If we do proceed with it, it will completely remove the metastatic site in my femur. Both operations will give me s short chemo break which will be nice.
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penny, when is your weather due to become warmer? Sorry your dh is getting up do early when the rest of us are tucked up in bed.
I am the other side of the Atlantic. Our weather is very mild but wet. It is about 52f here.
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freebird, it sounds as if your antibiotics are working but you have a way to go yet.
I hope you continue healing and get back in your treatment plan.
Good luck with your scans on Monday
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Springwatch,
If either one of the two op will remove permentely your met tumor and gives you a break and you body can handle the either one of the op then yayyyy for you.
It is the first time this happens at the hospital , it is the distributor in the region who is messing up. Let't hope it will not happen again.
Penny, i am sorry you have a bad weather , but this year was crazy it is cold all over the world. In this part of the world where i reside we have a desert wheather, so basically we had few months of nice temps around 70 and now we climbed up to the 80's
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Springwatch & Leah - sorry about your dilemmas. Praying everything falls into place soon. It's hard to be "in limbo". Kind of like me right now. I'm only on P&H, and that's only because oncologist thinks I should be on something while we await the results from the SIR-Spheres procedures. Scan on 3/25. I know that I'm running out of options, as far as chemo is concerned.
Prayers for all,
Penny
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Sigh. I know the extra week for healing from the biopsy is a good idea. The trip to the hospital for nothing - about an hour each way - was not a fun idea. Woody, it looks like you and I are fellow passengers on the Frustration Train.Leah
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I just wanted to send blessings to everyone. I have caught up on the threads but don't have enought time or brain power to write individual notes. Sorry. You are all in my thoughts every day.
I am signing off for a bit as today is my brain surgery to remove a tumor that I treated 2 years ago. I won't have access to electronics or feel like posting for awhile.
Take care everyone and best wishes.
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Thank Goodness It's Friday (TGIF!!) What a week it has been for ALL of us! Freebird, I'm so relieved to hear you're doing better. Do you have someone who can deliver groceries, etc to you? I hope so as you need to continue to rest. And I totally know what you mean about trying to remember everyone's names on this board - no worries, I have trouble too!
Leah, I've been working hard to try to be less impatient of a person and just calm down in general...but driving to chemo and expecting chemo!! would have put me through the roof. Mistakes do happen though, and I do like the idea of you getting an extra week to recuperate. Same for you, Woody. Right now, 80 degree temperatures sound wonderful, Woody. Is it humid where you live? I don't mind high temps as long as it is low humidity. I've always pictured you living in a beautiful exotic place...
RonnyKay, you have been my mentor on these boards with your NED and your enjoyment of life. I'm glad you are going in to check out your back. Good, bad, or ugly, lets just figure it out and deal with it, right?
All others, hang in there. Wishing everyone a peaceful weekend with few side effects. I'm off to go get my Red Devil....
Laura
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leftfootforward, hope all goes well. You will be on my thoughts until we hear from you again which will be soon, I am sure
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All the best prayers, left. Can't wait to hear from you again. :-) Penny
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Wishing you well, leftfootforward......many thoughts and prayers for you today! For springwatch, Leah, freebird, Woodylb, and Penny too........and everyone! So much going on in everyone's lives right now......you are all in my thoughts today.
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Penny, i pray your scan will give you good news on the 25/3 , and a lot of new drugs you may have a new option. My prayers are with you. ((HUGS)). Keep us posted.
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Despite the bad news about having to have another op. On my leg I have also heard that I am going to be a grandmother again later in the year. Something to cheer me up and live for
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Springwatch, this is wonderful news! It sure gives you a reason to live
)) wowww congratulations. -
My mom just started on Adriamycin yesterday after having no luck with Gemzar, Taxotere & Taxol. Praying that this is the drug to help shrink these tumors! Last petscan showed more spots on her liver, bones & she has the bilateral pleural effusion which started a few months ago.
Hoping we catch a break!
Anyone else have a good experience with the red devil?
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Springwatch - I love milestones. My first great-niece just got engaged. Thank The Lord for letting me be here for it.
:-) Penny
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I was taken off of the Red Devil last week my markers were going up so OC felt that cont. the RD would not be the route...I started Halaven yesterday (Thursday)...I had No se but fatigue....I hope it goes well for your mom...God Bless
I got a generous donation of food from my local bike (Motorcycle) club today...I was totally overwhelmed...that they thought of me...And at the end of the month I will be the Poster Woman for there yearly Poker run for Breast Cancer....Good news today...I feel honored and loved....Thank you God!! I sure needed this distraction right now in my life....
I wish every sister on BCO a great weekend...and hope they feel well...and we all are able to see fun...excitement...and life ..... going through this weekend...I am definitely going to make it a priority...
Love you all
Carla
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Tonight at 10 pm on HBO
VICE Special report: Killing Cancer
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freebird53 Thank you so much Carla! My mom had her first cycle of RD on Thursday so you both are on the path of something you. Just sent a prayer for you and my mom that our new chemos will prove to be successful in shrinking and getting rid of as much cancer as possible! Wouldn't that be great?! Ahh, I've been known to be a pessimistic person but when it comes to this I am forcing myself to see that there's no reason to diminish hope if there is hope and even in the hard days, to still find whatever ray of light we have and be thankful for every day with my mom.
Anyway, I am so glad you had a great day & such wise words to make a positive outlook a priority. I forget that sometimes. All the best!
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Sometimes I feel like such a sissy...I was just whining to my hubby that I'm sick of being sick and going to doctors, doctors and more doctors. Having more trouble with cardiovascular spasms, then came down with fever and chills last night. Feeling bit better today...saw cardiac doc and he has put me on a new calcium channel blocker to help with the spasms.
But even with that, I come here to catch up on all the posts and find that I am not doing all that badly...I still have chemo options left...just had great scan results, etc. So, my apologies for the whining! I see and feel all of your wonderful spirits shining so brightly and I am ashamed. Thank you so much for being here and reminding me daily that life really is wonderful and that I have MUCH to be grateful for. Sending prayers to all...and much love!!
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I have a question for any of you that have had a bilateral mastectomy...do you get a cold sensation in your chest? Just this last year I feel like someone put Icy Hot on the inside of my chest...right in the middle. I'm wondering if it might be nerve damage. I had my mastectomy at the end of 2011 and this symptom has become more pronounced over the past year. Anyone else? Or might I be headed for the loony bin? lol Thanks! :0)
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Hi Chichi, i hope this cardiovascular spasms of yours are better , do not worry everybody gets the same feeling at one time or another of being sick of doctors, scans, meds, etc...but at the end everyone is thankful and happy to be here.
As for your feeling icy/hot sensations on your chest even though i have not had any kind of mastectomy , i frankly do not know but under my armpit where they remived my auxiliariesuntil now and after four years, it goes numb from time to time so does my shoulder and it becomes cooler than the rest of my body. It may be the same . Since they remove tissues and stuff they probably hit a nerve somewhere. But if it continues and it is often you might want to check it with your doctors. Prayers, love and hugs
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I don't think the loony bin is in order chichimaine
I'm not a doctor , but my guess would be more likely nerve re-generation where nerves were cut and are starting to re-grow some. I had one mastectomy in 2009 and a prophylactic one in 2012. After both, I had all kinds of weird sensations. One of the more interesting was phantom pain in what felt like one of my nipples. Just out of nowhere I would get these stabbing pains. They weren't too bad though and I could massage the area on the scar and it would go away pretty quickly. The most troubling ones are itching in areas where I still have no sensation. It's hard to scratch an itch where there is no sensation I no longer have pain but both scars are still very tight and I have to massage with lotion daily. Light massage may help if the area isn't too sensitive. Hope it doesn't become too problematic. -
Thanks, Woody and Sarah! I was pretty sure it was nerve damage, but with all this heart stuff lately I think I've become a bit paranoid. lol I have also had the phantom pain early on after the surgery and still to this day get the itch that you can't scratch, Sarah! I will try the light massage too as my scars are very tight also.
Ok...no more complaining from me...God has seen fit to give me another day and I won't waste it that way. Hope all of you ladies have a wonderful Sunday!!!
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Chichi - I bet it's probably just nerve damage. Or maybe a pulled muscle? Have you been doing too much? Hope you feel better today!
:-) Penny
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Hello Ladies: I am on the BC thread for middle age and older Christian women and bestock or Becky as some of you may know her as has been on there with us. Becky was last on here in early Dec.
Becky sent us a very brief message Feb. 5th letting us know her liver count was 900 with ca 27-29. She was put on hospice care for liver failure. Becky she said she is surrounded with the peace of God. We have been praying for her but have not heard from since this time. Becky has been fighting the fight since 2003 and she is an amazing lady. It bothers us when we know longer hear from one of our sweet sisters. I read that she has been praying for many of you and wanted you to know.
Hugs to each of you.
Char
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Thanks, Penny! I'm going to try going back to work tomorrow and see how that goes. I'm feeling much better than I have since last Monday and spent the majority of Friday, Sat and Sunday in bed or sitting at the computer to keep from going stir crazy.
GardenGal77 - so sorry to hear that Bestock has been put on hospice. My prayers are with her also. She's been fighting a long time and I'm heartened to hear that she is surrounded with the peace of God. If you do hear from her, please let her know that we are all thinking of her and sending prayers for comfort.
Debbie (chichimaine)
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Thanks, GardenGal777. Prayers for Becky, her caregivers, friends, family, & medical teams.
- Penny
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GardenGal777,
Thank you for telling us about bestock, i've seen here few times ,it is good to know that she is surrounded with the peace of God snd his love.mmy prayers are with her and her family. And you are right it is so sad when you do not see someone on BC anymore it breaks one's heart.
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I'm definitely upset; found out my tumor markers went up again! For me the trend up is an indication the treatment isn't working. I just finished the second round of Halaven and get scanned next week. I so wanted this to be effective; so far Halaven has been good to me in terms of side effects, relatively speaking. I actually have lost my previous aversion to most foods which happened on Doxil & Adriamycin & am starting to eat anything. I also realize my options are running out. So, to say the least, my anxiety is high & it will be difficult to enjoy my week off with this over my head.
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So sorry to hear the bad news, SyrMom. Hope the scan results will be encouraging. Hope you find something you enjoy to take your mind off things and to take a break from the anxiety. Good music, good book, movie, walk in the park ?
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Thanks, Sarah, I'll try. I tend to be obsessive though, type A.
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Thinking of you, SyrMom. Hoping that your scan is much better than expected.
Rose.
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Thinking of you SyrMom Sometimes tumor markers aren't always accurate. They may have gone up because the cancer cells are dying. My prayers are that your scans will show that Halaven is working for you. I know the waiting is torture!!! Hope you find some distraction during your week off...visit friends, go see something you've never seen before or call a good friend and vent until you can't talk about it anymore! Hugs to you...
Chichimaine (Debbie)
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Saw my onc today before I was scheduled for chemo (Navelbine). He says he has been using it for years and years and never had a patient react with the coronary artery spasms...until me. My mother always told me I was special, but in this case I'd rather be part of the crowd! lol
I am taking a bit of time off chemo and we will meet again on the 23rd and try again. They are going to push it over a longer period of time and possibly reduce the dosage just a bit. I am also now on a medication that is supposed to help prevent vascular spasms, so am praying that all these things work together to enable me to stay on the Navelbine. It is working so well...my tumors are very small now. Will just have to wait and see...
Hope everyone had a good weekend and that this week is awesome!!!
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Thank you chichi, Debbie - wishing you success with your reduced dosage & vascular spasm med. I understand how scary it is, especially when something is working so well. Had that experience on taxol. Wishing you many more runs of Navelbine.
Steelrose, thanks to you as well.
I get what I need on these boards - there's nothing like it anywhere.
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Syrmom,
I am sorry to hear about your TMs but try to stay positive sometimes on a new med they go up before coming down again. I hope this is the case with you. I know that waiting is very nerve wrecking but try to amuse yourself to take your mind of thinking about it . I hope it is only a false alarm and the scanresults come out better than expected. ((Hugs))
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Chichi, lolllll you are special ! Didin't you know that? I hope the break and the dose reduction and the medication for the spasm will help put you back on track . Meanwhile , enjoy the break , it is notbad not to have to get chemo for a while . Xoxoxoxoxox
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Thanks, Woody.
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SyrMom, when i was on Perjeta, after second treatment my TM was spiked really high, my doctor was very happy, he explained that its a very good sign and indication that chemo works. Hope it helps.
Try not to worry, you cant change anything by worrying, its like praying for trouble. I know its hard and I wish we could get it easier...
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Keeping you in prayer, SyrMom. Keep us posted.
Hope you get those spasms under control, ChiChi.
:-) Penny
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Chichi - a few days ago, you commented how your mid-chest area felt 'icy-hot'. Did that end up being from the vascular spasms? I'm glad you are getting a break. I got a break for the first time since June since my counts were too low a few weeks ago and I think it really gave me time to get my head on straight again and also gain a little strength. I've felt a little more pulled together since going back on the lovely Adriamycin.
SyrMom - I wish I could be wherever you are and give you a big comforting hug. I'm a type A too so I know how our minds start racing and we just want to fix it right now. The one and pretty much only thing that settles me down more than anything else is going outside and being in nature. Literally driving the car somewhere to a state park or woods or especially someplace near water really centers me. I'll be keeping you in my thoughts.
Laura
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wishing you the best SyrMom.
Love to you all.
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Thanks to all of you ladies, you are truly compassionate & supportive & we're for each other.
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Thanks for all the well wishes.
Woody - It has turned out to be nerve damage that gives me the icy/hot sensation in my chest. And yes I am "special" - I get to come on here and read all the posts from you lovely ladies and partners in crime!
Hope the week is going well, Syrmom...thinking of you. And wishing all of you a blessed week!!
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Hi everyone. Just an update.
I had my liver biopsy on Friday 27th. It went well. Saw my onc yesterday but results not back so could not sign consent firm for drug trial. Go back on Friday. The tests start and I should get the drug within 28days.
I asked for more info on progression and I now have 4 lesions vary in size from 24mm to 10mm. There were only 2 in September.
The trial I am doing is to determine if a certain growth factor shields the cancer making it unreceptive. The drug should break this down making anti hormonal drugs work.
My thoughts are with you ladies having a hard time.
I send my prayers to you all.
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Prayers, mutherflush. Keep us posted. :-) Penny
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I second Penny Mutherfush our prayers are with you and keep us posted
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A lot of posts since I logged in last week!
SyrMom, I am sorry about the rise in TMs. I hope the scan next week is favorable. It could be the markers are indicating a positive response to the chemo. and they will fall again later. I will keep you in my thoughts.
Chichi, I have never heard of coronary artery spasms before. Did you get them while you were having chemo or did it come on after the IV? Fingers crossed the reduced dose and slower delivery will get rid of the problem.
mutherflush, I hope you get the results you want to get on the trial. Is it a phase II or a phase III trial?
I am not having the MRI on my leg until Friday. The radiologist had to work up a special protocol for the MRI and by the time that was done the first slot they had was available was then. It takes an hour and half, longer than the whole body MRIs I have had in the past. This whole business with my leg has really got me down. The first time I have lost my positivity since I was diagnosed with mets. It doesn't help that I am still not sure about so many things to do with this operation. I am also worried about how this is going to affect my chemo. I am hoping to speak to my onc. tomorrow about it.
End of moan.
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SyrMom, Chichimaine is right. Sometimes your tumor markers do go up as tumor cells are dying. I will pray your scans are good...hang in there. You hang in there as well, Chichimaine and try to enjoy your time off chemo.
Prayers.
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Thanks, Cbrogdon...I am hanging in there and trying to rest up and enjoy chemo free time.
Prayers to you mutherflush on the new trial...hoping they prove this new treatment does make the cancer unresponsive. They are doing so many wonderful things now to learn how to destroy this disease. Prayers for you going up.
Springwatch...I am one of a small number of people who seem to be pre-wired for the artery spasms. My cardiac doc calls it PrinzMetals angina. I first was introduced to this scary even after staring Xeloda - 3 days in icu/heart cath, etc.. So, I was taken off Xeloda and have been on Navelbine since October 2014 and doing great with it - se's not bad and it has shrunk the tumors to 1/4 their size now. Then suddenly, about four hours after my last Navelbine infusion, the angina reared it's ugly head again. Just really scary!!! I am praying that it was just some weird combination of things and events that triggered it and that it does not happen again when I start back on March 23rd. If it continues to happen, I will have to find another treatment/chemo. I will be thinking of you and am saying prayers that the MRI goes well on Friday and the surgery goes even better.
Hugs n love to all!
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Chichi, Thank you for explaining about your coronary artery spasms. I have never heard of Prinzmetal angina before. My mother was a frequent visitor to her cardiologist and over the years I thought I had heard everything there was to hear about angina. I looked it up and it is incredibly rare, 4 cases in every 100,000. You are very special! I hope you have success with the reduced dose on the 23 March and don't have to go looking for another chemo, especially as you already had to come off Xeloda for the same reason.
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Springwatch, good luck on your surgery, my prayers are with you .
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Thanks Woody. I don't have a date for surgery. Not until the surgeon has seen the MRI. I still don't know which of the two ops they will settle on doing. I am trying to get as much information as I can replacing the rod v. proximal femoral replacement. I have found out that the latter is sometimes done to remove sarcoma in the femur but I haven't found a discussion group where people have talked about their experiences of this surgery.
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Thank you all so much for your support and prayers. I'm feeling very vulnerable right now as I have had two chemos fail in succession.
Springwatch it is a phase II trial. I'm just so scared that while the tests are going on the dreaded is growing.
Will keep u posted.
Keep positive all you ladies. Who knows we could be on the edge of a breakthrough.
Big hugs to u all
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mutherflush, I think you will be monitored quite closely while on the trial. If the cancer is growing you will know fairly quickly. Let's hope that your results from the trial are all very good.
I had a call earlier from the scanner unit to book my whole body mri for two weeks on Monday, after my 6th round of gem/carbo. With the leg issues, I completely forgot this was due soon. I think the surgery on my leg will have to be postponed until after this as they don't like doing the mri within 6 wks of surgery. My onc will definitely want the mri so we can decide on what to do next. More gem/carbo, just gem, a new treatment schedule or a new chemo. It all hangs on that MRI.
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Springwatch I hope the MRI gives a clear look to your doctor so he can decide the best way to treat you. Keep is posted.
Mutherflush, i hope the trial would be beneficial for you and i oray God it is the right one. Prayers .
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Had my MRI earlier. Waiting to hear back from the surgeon, probably early next week. Wouldn't it be nice if he took a look at the MRI and decided I didn't need this operation?
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springwatch - wishing you clarity on what course to take; hopefully the MRI will help with that.
mutherflush - my understanding is they keep close tabs on you during a trial, so that's a good thing. I understand the fear, I also just blew through 2 chemos and may be a third depending on scan results nextd week.
To everyone else, thank you so much for your continued well wishes & support.
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My Family...Left to Right ...Rylin Jay...Daddy....Brody James...(My daughter) Mommy...and Me of course...It was my grandson's first b-day...Glad I felt good to attend...Thank God....
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Beautiful family, freebird. It's amazing how, events that others take for granted, we see them as "milestones". I was so grateful to God that I was well enough to go prom dress shopping with my daughter (and that I had enough dough to buy it!). I also was here to see my oldest great-niece get engaged. I have four siblings, one sister-in-law (husband's sister), 14 nieces & nephews, and 15 great-nieces-and-nephews. Oh, yeah, and 3 children of my own.
This is my daughter, Alison, in the dress she picked out:
Penny
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Freebird,
Lovely familly i am glad you were well enough to share special moments with teh. Gd bless you and your .m
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Penny,
You daughter is beautiful and she looks lovely and stunning in that dress. And wowww you have a big family , God bless them all and keep you well and healthy to share every moment with them.
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I had my first Navelbine infusion last Weds, along with my every-8-weeks Zometa. Now this is weird. Usually the Zometa makes me VERY sleepy. This time I felt normal energy, went to visit friends afterwards, normal life stuff. The next day I was at my DD's house to celebrate our holiday of Purim. In the middle of our meal FOOP! I all of a sudden couldn't sit any more, went to rest on the couch and fell asleep for over 2 hours (with all the kids running around and making plenty of noise). I was still tired when I finally woke up but after I got home - not tired. The next 2 days the tiredness descended suddenly the same way and left the same way. I guess it will be interesting to see how I react to Navelbine alone.
Leah
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Love the family photos - so cool to put faces to names! My oldest is home next weekend, I'm going to try to get a photo of both sons and will post.
Springwatch, I'm sure you are having a tension-filled weekend waiting for results. Scanxiety is the worst. I hope they call you first thing tomorrow with results and an action plan that will bring you comfort.
And Leah, wow. Hopefully that was just a fluke. Funny story for you - apparently I was delivered a Shelach Manot bag from my synagogue but it was accidentally delivered to my next door neighbors...who greatly enjoyed the 'hamentashen' cookies and other treats and thought it was very kind of them to give them that! She told me about it and I just told her how happy I am she enjoyed it!
Love to all,
Laura.
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Hello all,
This is my first time posting but I have been reading posts for many months and find great comfort in the support this site brings. I was originally diagnosed with Stage III BC 12 years ago. During my routine scan in May 2014 they discovered several small metastasis to my liver. I was immediately put on anti-hormone therapies and my cancer progressed. I had a good few months with Xeloda, but my scans on Monday showed aggressive progression in my liver and lungs and now I have fluid around my lungs. My onc wants to start me on Docetaxel ASAP. Throughout this whole process I have had very few symptoms. My onc makes it seem IV chemo is the last resort. I am getting a second opinion from another hospital as I am hoping to get in a clinical trial. I am scared about my quality of life as my onc said I would need to be on this forever. I am just still so shocked as I feel completely normal! Has anyone been told to go straight to IV chemo after the first oral chemo stops working?
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Infinitorthefoght03,
Sorry you had to join this thread, but welcome as you will see you will find plenty of support and kindness here. You mentionned you had after twelve 12 years seen liver spots and were started right away on anto hormonal. Was a biopsy performed on the liver in 2012? If not then this is all wrong , a biopsy should be performed to identify if the liver is consistent with your primary tumor 12 years ago , if it has changed or if it is another type of cancer all together. You are stage IV cancer and yes stage four unfortunately we are continously in treatment. It is crucial that you have biopsy performed on both liver and lungs to corrolate with your first cancer and see if it is the same or stauts has changed in term of ER ,PR, or HER2 or if it is totally a different cancer. Some of us started in stage four on chemo and others on anti hormonal , some on both some on other therapies. The main prpose of the therapiesare ti conain the disease or to stop progression , in very rare case to cure. It is along process and patienc is the key word. A lot of us lead almost a normal life. With some ups and downs of course.i urge to make sure you are well diagnosed and this includes biopsies so they can treat you properly. Chemo is a big part of treatment if this fails then you are put on trial medicat. i Hope this helped.
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The biopsy results show the HER2 changed from +1 to +2 (equivocal). So now there will be a FISH test to see if Herceptin will help. I sure hope so because it seems nothing else has.
I started the Navelbine last week. Not too difficult - sure hope it helps.
Leah
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Hi Leah longtime, i am glad you started nevalbine and happier it seems easy , it has good response usually , i hope it will do the same for you.,
About the HER2 status , i want to tell you i had the same results in my biopsy the first time it was equivocal and the FISH was done by roche and it came back negative, and did the test again on the same sample in beirut at the american hospital it showed +3 and seen by three different pathologists and because of the negative FISH they redid the FISH also and it came bacl negative. So i sent ot for an intelligent genomic test in Germany where they performed a CISH test and genetic testing it came back fully HER2 postive and my treatmen worked. I am ILC and ILC is never her2 + except for a very few numbers around the world. But the doctor in germany said the same sample could be depending on how it is sliced both her2- and from the Other positive it is called hetergenous cancer. I hope this helps you.
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Penny and freebird, I love your family photos. Freebird, your grandkids are so cute and Penny, your daughter looks stunning. Green really suits her.
Leah, I hope the navelbine continues to treat you gently and you plenty of energy after your infusions in the future, even if those spells of energy seem to be so unpredictable. It seems strange to be saying this but I hope your FISH test comes back +3. You will then have another treatment to try and which will hopefully keep you stable or NED.
Benjnate, Hope you enjoy your upcoming weekend with your eldest. My eldest daughter just went back home today. She has been here looking after me. My younger daughter takes over responsibility from this evening.
initforthefight, First of all welcome. As woody has suggested, you must insist on a biopsy of your mets especially as such a long time has elapsed between your primary diagnosis and finding the mets in your liver. They could have changed status. If you haven;t got it already email Bestbird and ask her to send you a copy of her Insider's guide to MBC. It has a lot of useful info. https://community.breastcancer.org/forum/8/topic/8...
I would not be too alarmed at having to switch from oral to IV chemo. Chemo is chemo, whether you have it fed into a vein or take a tablet. IV chemos are not the last resort as your oncologist portrayed them. I started out on IV chemo (taxol) then switched to Xeloda (oral) which failed and like you I had significant progression, especially in my liver. I am now on gemzar/carboplatin, another IV chemo, which was working well at my last scans. Most oncologists would treat with hormone therapy or herceptin, a targeted therapy first if your cancer responded to either of these treatments but many oncologists will start with IV chemo and then switch to hormone or targeted therapy after. There are no hard and fast rules. Treatment for mets is a forever thing. There are very few cures when you reach this stage. Maybe 1% or 2% and they are usually those who have ogliometastatic disease, a subset of cancer patients who have maybe two or three mets which can be removed or agressively treated. A very few people who are HER2+ have also been able to get a total remission of their disease.
Don't be too despondent at this time. There are plenty more treatments out there which can keep your cancer under control.
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OK. Update on my leg surgery.
It still hasn't taken place. My oncologist vetoed the proximal femoral replacement and we are doing the hardware replacement operation instead - femoral nail exchange. They are removing the old broken hardware and refitting me with a wider rod and screws. There is no guarantee the problem won't happen again but I am keeping my fingers crossed. I can't have any surgery until after the 23rd when I have my next whole body MRI to see how the chemo is working. The reason is the one I mentioned before; no MRIs within 6 wks having new metal work put in. My surgeon is leaving for a conference on the 22nd and won't be back until the beginning of April. This means I am booked in provisionally for the 10th of next month. In the meantime, I am to stay as 'non-ambulatory' as possible and under strict instructions not to fall over. I am taking a lot of tramadol which is keeping the pain under control and spending too much time in bed which is frustrating as I feel otherwise well. I am going to complete my 6th cycle of gem/carbo before my next scans and the surgery later. Until I have the operation, my daughters are taking it in turns to run around after me while I sit back and do nothing.
I went to X-ray yesterday to have a port check - it keeps refusing to let anyone do a blood draw, except on rare occasions. The radiologist gave it quick flush with saline and it gave blood at the first time of asking. It is a very temperamental port! The radiologist is happy for the port to be used still despite it's misbehaviour, which saves me having a new one put in. I couldn't have faced that with so much else going on.
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Leah
Praying for you that the Navelbine works and that you can get Herceptin.
I have been Her2nu+ from my original diagnosis in 1997. When my onc wanted to biopsy my bone mets in 2011 to see if I was still ER+/PR+ my results came back that yes I was still highly positive, but what a shock that my Her2nu came back negative. My onc said that is ridiculous that he was sure I was still Her2nu+ and that it sometimes doesn't show up in bone mets, but more likely in organs. I am not familiar with the FISH test, so really don't know how the testing was done. Luckily, however, I was able to still get the Perjeta and Herceptin since he used my original report from 1997 to request the Perjeta. And the Perjeta did help keep me stable, so I am sure that I am still Her2nu+ even though my bone mets didn't show this.
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Woody, thank you for the info on the further testing if the FISH test is negative. I'll talk to my onc about it after we get the results. The test is being done at Hadassah Hospital.
Springwatch, best of luck with the surgery. And thank goodness your port is working again!
Leah
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Springwatch, good luck on your surgery even thugh i think they are making you wait with all this pain. At leadt tramadol will relieve some of it. Meanwhile rest since you will have plenty to be busy about later. Hugs.
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L
Leah, you are welcome and i do hope it has changed in status as it will give you plenty of options and maybe NED. For me it gave me a new extention on life i hope it does the same for you. Keep us informed.
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I love your picture OBXK! You go girl. Good luck tomorrow. Susie
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apackoftwo, I am very sorry but OBXK, Karen, passed away on 29 December 2013. She was one of the original posters on this thread who sadly is no longer with us.
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I saw my onc for a few minutes today when I went for my tx (not a regular visit, a passing-in-the-hall talk. I told him I was dealing with the bureaucratic stuff for the FISH test. I also told him he was fishing for answers on this.
I love being a brat.
Leah
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Hehehehe good for you Leah sometimes being a brat can save your life ! They run away when they see me and they think twice before talking to me
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Leah, Very funny. Keep on being bratty.
Woody, Surely they don't run away when they see you?! You are their favorite patient! My mother made was a real pain in the A when she was in hosp after falling and breakng her shoulder. Rude and never saying thank you because the nurses had to help her - it was their job. By the time she left 6 wks later she had earned the dubious accolade of 'the patient we would most like to see go home'. I am sure you are not as bad as that!
Had my gem/carbo this morning and will have the gem only part of my cycle next week. Then scans to see if the chemo is still working. I will be getting 4 wks off treatment to prepare and recover from the operation at the beginning of April.
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Lollll Springwatch, i am telling you they run away but not because i am rude but because i don't let them get away with anything. So everytime i am there they have to prepare to answer all my questions and i do question everything they say , decide or do. Nothing passes without my consent , i found out this is the best way to make sure theydo not make mistakes and also to keep remonding them that i am alive and kicking lollll.
I hope your scans will give you good results and i am happy you get to rest before going to surgery. Keep us informed. My prayers are with you always.
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Woody, I thought maybe they ran away because they thought you were a difficult person, like my mother. Good to know that it is just because you are being your own advocate and making sure that no stone is left unturned!
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Lollll i know what you thought Sprinwatch this is why I explained lolll. However, my father is like your mom nobody wants to treat him he is very difficult and yells at everyone.:))))
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Woody, My mother passed away a few years ago but it would have been interesting to have put the your Dad and my mother together. Some people are not happy unless they have something to complain about.
I do pester my onc with questions, too but so far he has been patient with me.
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Hi Leah. I had my liver biopsy the same week as you to determine whether my liver mets were HER2. They have not responded at all to the last 3 chemo's.
I am still waiting for the results. Meanwhile I have had various tests ready for drug trial due to start 31st March.
I am desperately trying to regain my strength and appetite from a course of Halaven. It has been a month since my last shot and I am still feeling weak.
I will be interested to see what happens next for both of us.
X
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Oh my...talking about parents being ill! My mom was a pistol...I hung up on her a few times. We knew she wasn't well, not being herself & then she was dx w/lung/liver C, given 5 days to live. I said I knew 5 months earlier she was not well, because she was not happy at my DD's wedding. So when the whole family converged to spend her last days together, our SIL walked in and she said, "Sorry I was a bitch at your wedding!" We were all shocked...and my dear SIL said, "You were absolutely beautiful!" What a prince. She lived 17 days & taught us all how to say goodbye with grace, peace & faith.
Anyhoo...Spring!!! Sending my love & prayers for successful surgery...a strong leg w/no pain!!!!
Leah...glad you're feisty...that's a good sign & hoping the fish test comes out +. It's so amazing how helpful sisters are! As different as this stupid disease is for each of us, there are also many similarities & it helps so much to be in this together! I need to catch up...but love to you all!
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Finally some good news after blowing through 2 chemos since August & beginning Halaven in February. After only 2 rounds of Halaven, the liver mets are responding favorably! They are smaller and no new liver mets!! Thank goodness!! It's been so long since I had any good news. So far, since 2010, the only treatments I've responded to are femara, taxol & now Halaven. Scary, risky & weird, if you ask me. Consider myself lucky to be alive to tell about it!
Now if the back pain/spasms can only be figured out. Going on 3 weeks of pain. Little better, but not much - even hurts to drive. Had a MRI of whole spine, although every vertebrae has mets, no worse than the MRI in January. Having bone scan next week just to be sure no new mets in rib/scapula area. Otherwise, trying titrating dose of steroids to see if the inflammation will calm down. I still think it's the chemo - a side effect. My theory is the chemo makes the muscles so sensitive that the least little thing sets them off, because goodness knows, I didn't do anything strenuous!
Anyway, it's nice to have some weight off my shoulders, for now. It's been such a long time! Although I don't minimize the support friends give me and the hand they often extend, bottom line, it's hard doing this when you are dealing with it alone, on a daily basis. So glad you ladies & these boards are here!! Thank you.
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Spring, i am sorry about your mom passing away but humbled she dod ot gracefully. And yes it would have been interesting to put her together woth my dad , i believe there would have been a mutany at the hospital
). I hope you are emotionally preparing yourself for the op , god be with you. -
Mutherflush, i hope your biopsy results comes back with a new hope for a new treatment and that you regain your strength before a new treatment. Hugs and prayers.
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RonnieKay, may your mother's soul rest in peace , you always habe so much in common with all of us it is eerie lollll. You are right having each other here on BCO and sharing our experiences really does help us to understand and deal more with our disease. Xoxoxoxoxox
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Syrmom,
Yayyyyyyyyyy, finally some good news, i a, thrilled you are respnding to halaven and most importantly glad you have this boost emotionally so you can keep fighting as you always did. I agree with you chemo does cause bone and muscle pain , i had the same when i was on chemo alone and kept having bone scans and CTs which never explained the pain. I hope the steroids will help with the pain and calm down the flare. Hugs and prayers that you will continue to do well on this regimen.
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I'm chiming in with Woody, SyrMom, hooray for Halaven kicking liver mets! Hoping the bone scan shows nothing new. It's hard to deal w/unexplained pain...physically & emotionally...and there's so much of it when chemo is killing good cells with dreaded bad cells. I hope the back pain/spasms subside soon!
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SyrMom - thanks be to God! Yay! :-) Penny
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SyrMom, At last something that is working on those liver mets! I hope it continues for some time to come. I think the pain is probably related to the chemo. Muscle and joint pain has been reported as a side effect of halaven.
Motherflush, Good luck with the results of your liver biopsy and the drug trial starting on the 31st of March. It is scary when you are starting something new and hoping.
Woody, There probably would be a mutiny at the hospital if your Dad and my mother were there at the same time. My mother was no saint, far from it. It wasn't just the medical people that had a bad time with her. She often threatened to kill me and told her friends and doctors that I didn't look after her properly and was a very poor carer. The first time my sister took her to an appt., the doctor asked if this was her other daughter. My mother responded, "yes.... unfortunately". You get the picture.
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Woody, Ronnie, Spring, Penny - yes! Thank you!! I've been so worn out emotionally from progression, pain, etc. I slept well last night! If nothing else, I'm less tense! Maybe that will help the back pain! Just haven't figured out how to get it under control, so debilitating. Have a good day!
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SyrMom, Yay!! You've made my day with your good news! May it continue for you
Rose.
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Happy Dance for Syrmom!
Leah
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brain mass was just scar tissue and radiation necrosis. Few! Oncologist has graduated me to every 6 month scans from every 3. Same meds. Nice to be getting to a stable space with less testing. I'll see her every 6 weeks instead of every 3. Nice to be moving on. Just waiting to get off the anti seizure meds so my head will clear.
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Holy Crap, Leftfoot!!!! That's my "I'm excited" comment!!!! This is such goodnews...and you know how we love good news!!! I bet those drs were just as happy :-)....and to move to 6 week appts & 6 mo scans...that's BIG! Happy dancing. You should take another island vacation with your sweet family to celebrate
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And a Happy Dance for Leftfootforward too!
Leah
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Leftfoot, wowwwwwww wonderful news , doing the happy dance for you . Yayyyy.
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Thanks, Leah!
Fantastic news, Leftfoot!! This was the good news week. Rec my good news on Fri. 13th! So take that BC!
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More good news! First SyrMom and now you,leftfootforward. What a relief!
I hope this is the start of a trend on this thread. Wouldn't that be nice?
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I agree, lets continue this trend. Congrats to those of you enjoying a reprieve and hopefully the rest of us can follow!
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I agree, Laura. Liver mets are real tough to deal with & treat & support is so critical. I've also been very surprised and hopeful when reading how some women's liver mets actually disappear & haven't returned in years!! Never thought that could even be possible. Now, I'm sure it's more the minority vs majority; however, why not!! Why can't it be a result for any of us! We just don't know unless we try. I'll admit, I get real discouraged, though, when progression keeps raising it's very ugly head! As we know, this is a roller coaster ride; never did like roller coasters.Last night started with the leg cramps in addition to all my other skeletal spasms (back being the major one), ugh! I will find a way to live with this if it means those liver mets are being kicked out - I'm real convinced it's a side effect of Halaven. But I have my appetite & that's major for me, to enjoy food!!
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Great attitude Syrmom i am glad yoy got your spunk back , because this part of kicking those mets right in the gut . Yrue progression sucks and I , like you hate rollercoasters. But if one treatment works well enough to retreive them than yayyyyy for you. Liver mets are the hardest but the can be handled and as you said why not us? Mine disapeared for now and i hope more of us will follow . I am sure the spasms are from the chemo hang in there a get a good med to relieve you and hopefully your next scan will bring more good news. Xoxoxox
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Thanks Woody, yes, have some spunk back. I was at the point I couldn't even post, between fatigue & depression, just was so apathetic! Cautiously optimistic now!
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I'm not sure if anyone give me any advice, but here goes. I was diagnosed stage IV with liver mets on Dec 2nd, 2014. The timing of my diagnosis was crazy because I was in the process of moving to Duluth, Ga from Fort Belvoir, Va. My doctors at Fort Belvoir, immediately sent me back here (I flew out on Friday) to Emory University's Cancer Center in Atlanta to start treatment that Monday. My whole world was literally turned upside down as most of you all must have also felt. Chemo knocked me on my butt, and I have been vomiting from the first day of chemo till today. I cannot hold any food down. The doctors have done all types of test and given me all types of nausea medications and nothing seems to work. I am getting desperate. I am so weak and fatigued. I can barely walk. I have chemo this tues and I am going to beg the doctor for nutrition through IV or whatever they can do. I get so frustrated because I feel like they are not listening to me and are just treating the cancer but not treating me. Help anyone, please!
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Dear sharonsp, welcome to BCO forum where you'll find many people with extensive practical and research knowledge, who may be able to help. Sorry you are having such a tough time and we hope it settles down or some treatment for nausea. Hope the nutrient situation can be sorted out too.
It must be so hard to be moving only to be sent to Atlanta for treatment.
All the best, The Mods
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I just got diagnosed with stage 4 breast cancer with Mets to my bones and liver, back in September 2014. Forgive my ignorance, but what is NED? Also, does stage 4 mean we are on chemo forever, do we ever get to have hair again? I'm not familiar with all this yet, as my onc moved and had to start over with a new one. So far, I've had 8 rounds of radiation and next week will be my 5th chemo of herceptin and Perjeta, along with taxol. I used to have liver pain and vomiting. Now the pain isn't as often and haven't had vomiting in while. Just had a PET that showed no progression, but still have to go over the results with my onc to ask more about the liver. Is it better to just have the tumor removed? Thanks for any info!
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Hi, sharronsp. So sorry to welcome you here and to know that you're having such a rough time, along with the stress that goes along with moving. It's important to get something in you that will stay down. Your body needs good nutrition to fight those liver mets. Have you tried ensure or something similar? How about yummy smoothies made with just fruit and crushed ice (the dairy from yogurt probably won't agree with you). At the very least, I'd try some gatorade to get some important electrolytes back into your system.
What kind of nausea meds have you tried? Sometimes I have to take both zofran and compazine at the same time to successfully fight off the nausea.
I pray the doctors give you better advice or at least set you up with a nutritionist. I know others will come along and give you some more advice here, also.
Do you have any help? You're exhausted and it would help if there were someone to make you some dry toast or heat up some broth for you. If anyone offers help, don't be afraid to take it and be specific about your needs. Trust me, we've all learned that the hard way.
Keep us posted on you.
- Penny
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Hi, Allyme. Sorry about your diagnosis. NED is the acronym for "No Evidence of Disease". As stage 4, it's assumed that there are always cancer cells floating around in your bloodstream somewhere, but if you're declared NED, it means that there is nothing large enough to be detected on scans. Some never get to NED. Some have it for weeks, months, or even years. As stage 4, you'll always be on some kind of treatment, whether it's just chemo, chemo with anti-hormonal meds, just meds, perjeta and/or herceptin, or whatever cocktail the oncologist and you decide is best for you. You'll even be on something if you reach NED status. Your hair will come and go, probably several times through the years, depending upon what treatment you're on.
You can ask to referred to an Interventional Radiologist (IR) to discuss targeted treatments on the liver, such as ablations, Sir-spheres, chemoembolization, Stereotactic Body Radiation Treatment (SBRT), or even surgery. Some patients have had better success with these treatments then with systemic (chemo, etc). Everyone is different, including your body's reaction to treatments.
I say thank The Lord for the great scan showing no progression. Since you have no pain and no vomiting, I'd ask the oncologist if the mets have shrunk.
Be your own advocate - learn your pathology (er/pr status, grade of cancer, etc). Learn about treatment options. Don't be afraid to get 2nd opinions. My first oncologist would not refer me to an IR. My current one has no problem working with one.
Keeping you in prayer. Keep us posted.
- Penny
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Sharonsp and Allyme, i am truly sorry you have this club but welcome . As you will see there are many of us here and we are all eager to help in any way we can. Of course we are in no way a replacement for doctors but we can share experiences and knowledge and give each other courage and hope.
I conquer with Penny you have to be your own advocate , and if there is something you are not pleased about , then you make sure you tell it to your onc and make sure he answers. Second opinion is another option . Sharon not all people are able to have a surgery on any other intervention with liver mets. Each body is different and each cancer is different you will habe to ask a specialist so he can tell you if you are candidate to any of the procedure Penny mentionned. At stage IV you are always on some kind of treatment. It is not a curable stage ( only 1% are cured) but it is a manageable stage now woth new medication coming up every few months and we are lucky there are so many options.
Allyme , i would ask my onc if there was any regression and how much taxol/herceptin/perjeta is a good combination and is giving good if not excellent results though the scan should be done between the third and fourth cycle of herceptin/perjeta and taxol and you have to leave at least one week between cycles to have the scan so you can get accurate results. After three months on this combo my liver and spinal mets disapeared there was no indication of any activity on the PET. now in april i wll have my second PET and see what is there. Then my onc will decide a course of action according to the results. I pray you have the same results soon God's willing.
Both Sharon and Ally tell your doctors of any discomfort you have and insist on a solution specially you Sharon he has to find you aneffective med for vomitting as you need a good nutrition. I , along with my onc i have a family doctor whom my onc reffers me too when it is something he cannot handle . Usually he goves all meds related to side effects but she helps me manage them.
To both of you i wish good results and it is a long way and hard at times but very doable have faith, patience and be sure you are physically and emotionally fit enough to endure it. My orayers are woth the both of you.
Keep us posted
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Lolllll Syrmom you are still my hero ! Plus it is normal to be apathic from time to time chemo does that to you. God bless you and keep this high spirit in you even cautiously . Hugs.
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Hello all -
I was just recently diagnosed Stage IV after a PET scan and biopsy that showed a single liver met (no lymph node involvement so it must have spread through the bloodstream). When my onc called he told me the median overall survival was 14-16 months. I am 35 and have very young children. The diagnosis was crushing at first but all of you are showing that there is certainly life much longer than 14-16 months after a diagnosis like this.
I was wondering if anyone had a similar diagnosis (stage IV from the beginning and not recurrent with liver met) and if your onc suggested anything other than just the chemo and targeted systemic therapy? Like radiation or surgery for the met spot or anything else? My onc is saying that he doesn't recommend it because it doesn't do anything to prolong my life. I was thinking of asking for a referral to see a radiologist anyway.
I just started chemo and herceptin and perjeta on March 12 and can no longer feel the lump that was distinguishable just a week ago. I'm hoping it has the same effect on my liver. I'm just at a point where I want to make sure I'm doing everything I can from the beginning to fight this cancer. I have tried calling for second opinion Dr. appointments this week but nobody will see me since I've already started treatment with another doctor. They said they would be able to talk to me after I finish the chemotherapy.
Any thoughts you may have would be extremely appreciated. Best wishes to you all.
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I have liver mets confirmed in 2013. The scans since show only one spot. For the last few days. I have been having slight dull pain on right side under ribs. Going tomorrow for all of my scans. Could this be progression?
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Josalive - I don't have the same experience but I would keep trying for a 2nd opinion. I find it odd that the excuse is that it's because you already started treatment. I thank The Lord the lump is smaller - I think it's a great sign of what treatment is doing in your liver. Someone else who's been diagnosed the same way will be along I'm sure. Sorry you're here, but you've come to the right place :-)
Roberta2 - I've had slight pain that had turned out to be regression, from scar tissue I guess. Keep us posted on your scans..
Prayers for all,
Penny
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Josalive, I was dx out of the gate in 2008 with Stage IV Triple Negative Breast Cancer with Mets to Lymph Nodes, Liver and Lungs. After my first round of Abraxne shrunk my tumor and it wiped out everything except a spot the size of a quarter on my liver. The doctors decided to try Red Devil first then schedule Cyber Knife Surgery to zap that one spot on my liver. I never did the cyber knife cause the Red Devil got me to NED (no evidence of disease). Following the chemo, I got a double mastectomy, followed by radiation and for the heck of it another round of Abraxane.
To this date I am still NED and have been on a extended chemo holiday since 2009, so anything is possible.
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Josalive,
I am really sorry you are here but as Penny said you have come to the right place. Having liver mets from the begining is sure not a nice diagnosis. But your onc had no right to tell you what is the median survival before at least the first therapy. While it is true in stage four surgery on the primary cancer is obsolete because it is already outside your breast it does not mean you are condamned. The therapy you are gettting now is the new first line therapy for her2 + cancers and people are getting excellent results on it. The results will show after your third cycle and will continue after that. Actually, there are some studies which show that people who are stage IV from the start do better than those with reoccurent disease. I also like Penny find it odd that no one will see you until you finish your treatment. Even though this treatment if it works for you will continue minus the chemo. There is a lady here who was diagnosed with liver mets from the begining 13 years ago and she is still alive and kicking. So 15 months is really too generalized it is median true but if this one is successful you will get 56.5 months and i do not advise to think ahead of this much as each cancer is different and respond differently . Who knows your may go into remission for a long time . There is no way of telling or knowing. Wait first to see how well you will do on this one and take it step by step. Already after few weeks you are not feeling the lump this isgood news right? So focus on that right now the rest will come later. Statistics are done as a guidlines not as a must do or must happen. People respond differently. Stay strong for your family and yourself and have faith. I know it is not easy but it is a start. God be woth you and please keep us posted.
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Ronerta2,
I have pain till now everytime i have my chemo session and it is not a progression , actually it was the opposite all my mets were wiped out. Chemo causes pain in different parts of the body unless the pain is unbearabl whoch in this case you should mention it to your onc , otherwise do not worry.
i hope your scans will validate regression. -
So many new names here!
sharron, Good luck with your chemo today. If you are still suffering from nausea and vomiting press your medical team to do something about it. There are many different meds out there for dealing with chemo induced nausea. Some people will respond better to one medication than another so it is worth pursuing this to find out what is right for you. Have they given you anything to take at home? I take odansetron. I am sorry that you are dealing with the stress of moving at this time, too. It can't help.
Allyme, Regarding NED status, I prefer to think of it as no evidence of active disease. There is always some evidence of the disease whether it be damage to bones or scar tissue after the mets have been treated. The important thing is that you do not see any progression and your disease is under control or even better, regressing. It is not always possible to remove the tumor depending on it's location. In some cases removing it can be more problematic than leaving it for the chemo, targeted or hormonal therapy to work. Having said that, it is well worth getting an appt. with a interventional radiologist (IR) to see if you are a candidate for one of the treatments mentioned above. I hope an IR is able to offer you something positive.
josalive, I would continue to try and get a second opinion. I am afraid I don't like the attitude of your oncologist. No one comes with an expiry date and there are many, many women here who have lived far beyond 14 to 16 mths with liver mets. A lot of research has gone into targeted therapies for HER2 positive cancers and they have been very successful in keeping this type of breast cancer under control.
Roberta. The location of the pain does sound as if it is coming from the liver but without the scan it is impossible to tell exactly what is going on. I have had pain from liver met progression and liver met shrinking. I hope your scan today comes back with a good report.
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My surgeon called yesterday to say he had another look at my MRI and found a sacral fracture. I have to see him again tomorrow to establish how much of the pain in my hip is related to the sacrum and how much is related to the faulty hip screw. He says he still wants to do the femoral nail exchange. Apart from the hip pain and fatigue from chemo I feel well. I have my MRI on Monday to see how well the chemo is working and I am hoping that at least is positive. I could do with catching a break. No pun intended.
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Springwatch, I do hope you catch a break, lol!
I am leaving for Pittsburgh soon, 2 hours from my home for a whole body scan due to the intensity of pain in my legs. I went to the ER and the CT scans showed nothing. I swear that Adriamycin is going to do me in with generalized pain. However, my TM's shot up to 160 and since mine are very precise it is time for a change anyway. Only 3 months on the Red Devil - I hate blowing through chemo's, as we all do.
I put my house on the market last week, my youngest graduates from high school in June (when I will move) and I'm moving to Pittsburgh to be closer to my doctors and to family. Wow, realtor just called and they are showing the house again in a 1/2 hour so I better stop typing and straighten up again...stress,stress,stress
Love you all and a warm welcome to our new members on this site!
Laura
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Spring,
I hope you really catch a break
) . But it is good that your doctor is being thourough before you surgery. I hope you MRI shows good results after the chemo . Hugs. -
Benjnate,
Even though it is a trying time for you , i am glad you are moving close to your familiy and doctors. I hope your body whole scan will show at least stable results. Keep us posted . I hope the move will be beneficial for you. Keep us posted.
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Maybe you've seen this button before, but it's my first time. I thought it was cute, so I'm sharing:
:-) Penny
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Spring...I'm glad you're feeling better (with JUST hip pain & chemo fatigue...that would put most people over the edge!). Ugh..what does this new finding mean? I just pray surgery begins a new healing process so you can be free of that pain & move about any way you want!
Benjnate...I'm hoping the house sells quickly...maybe today!!! Being closer to family & good doctoring will surely be wonderful support! I hope the boys are excited...although I moved teens & every now and then (20 yrs later), I hear about it! Prayers for your scan to go well. I never had Red Devil...no lymph nodes involved with first 2 dx (so thanks capillaries...for taking pesky cells to my liver!)...but I know it's tough stuff.
My head is spinning. So much going on. I've been Gma in a big way the last few weeks, helped DD clean a very "not clean" house (she is the breadwinner & works long hours, DH is an artist...would be starving artist if not for DD), babysitting...which I love, preparing for DS's family visit Easter week, tx, dentist, etc. It's all so good and not a day goes by that I don't thank God & family & YOU, and meds...but I have a headache that won't leave me. I'm finding myself much more forgetful and grasping for words/thoughts lately. It's very strange...now that I've been off Navelbine for 5 months. So Penny....I love your button!
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Lolllll Penny cute button , i love it !
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RonnieKay,
You seem to be busy on different fronts , god bless you ! But i am worried about your persistent headache specially if you are grasping for words. If it persists check with your doctor, don't be a champ. Big hugs .
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Hello ladies,
My biopsy finally scheduled for next Tuesday, 24 with possible RFA (Radiation Frequency Ablation?), did anybody had that done, whats your experience/advice, any input please, will appreciate it very much.
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Ella - I had it done twice. Sometimes the IR (Interventional Radiologist) will use ultrasound to guide the stereotactic needle, but mine were done using CT scans. The liver area is numbed up and you're given twilight sedation. They wake you up periodically to breathe so they can locate/burn the area. Depending upon the size/number of mets determines the amount of time it takes, but I think @45 minutes is the average. Recovery is easy. They keep you in a room for about 4 hours before sending you home. The IR will probably scan you about a month afterwards to see how well it worked. I did not have a lot of pain at all. God bless you. All will be well. Keep us posted.
:-) Penny
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Thank you Penny!
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Ella,
Good luck on your RFA I hope the outcome will be beneficial to you. God bless. Keep us posted.
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Wow, so much activity on this board, welcome to all the new folks. Sorry you find yourself here, but believe me, it will give you hope and support, no matter what else.
Been so busy with scans, that lost track for a bit. In past week had CT Chest/Pelvis, MRI whole spine, Bone Scan (still waiting on results), chemo, PT .... you know the drill. Known extensive mets throughout spine & skeletal, but question is is there something new causing this new onset of pain I've been experiencing. MRI indicated edema throughout, suggestive of sprain throughout; only thing is I didn't do anything! Going on 4th week of pain, somewhat better with titrating dose of steroid. I still feel in my gut it has to do with the chemo & what it does to the tissues, muscles, etc. Just haven't been able to figure out a way to try and offset it & no one seems to have a clue either.
Spring - sacral break!! Oh, my, so glad your ortho saw it b4 surgery & despite all of this you say you have been feeling well, thank goodness!! Hope your scans showed positive results as well. At least heading into better weather should help with navigating, rather than dealing with ice and snow! Pls. keep us posted.
Laura - Hope your full body scan was uneventful and some answers are at your disposal by now. I understand the pain factor and how scary it is, especially a fast onset. Also, the tumor marker rise, mine is always an indication if it's a constant trend up month after month - ugh! Had first decrease this last week, after an increase 2 weeks ago! Usually only run once a month, but since the CT showed some regression it wasn't adding up, so I'm glad to know at least for now they dropped some. Not in "normal range" yet, but I'll take what I can get. I, too, hated adria & was not sorry to see it go, just freaked that that it was another chemo I blew through within a couple of months and considered one of the best for breast ca since the early days. However, never felt good on it no matter how hard I tried. I still maintain the chemos are at the base of my pain, but I'm repeating myself, sorry, chemo brain defin. at work too!
Ronnie, pls follow with your provider re the headaches, etc. I get word find issues now from chemo brain, but with a new symptom of headache, don't delay - I know it's scary & I hate pursuing these things, but as you know, the sooner there's some kind of explanation, the better. For me not knowing is worse than the knowing.
hydeskate, I am so glad you told your story!! Wow! NED since 2009!! That is just something else & to have started with mult areas of mets, liver, lung, etc. You defin. will be a source of hope and inspiration to me that it's possible to get NED or at least stable. I would be over the top if these liver critters would disappear!! Felt I was almost there when taxol stopped working - just crushed me as it was 2 weeks b4 my daughters wedding in August! From August till last month, NOTHING had touched them & progression - now I'm getting a positive response from Halaven!! Thank goodness, but it was a long time progressing & my liver has more progression than ever, but there's at least hope back.
To the newer folks to liver mets. Yes, its a shock! I began Stage IV right from the start with mult bone mets & later moved into liver. However, don't let anyone give you an expiration date!! You can see from this board and others like it, there's no way to know. As far as no second opinion because you are on a chemo, I think that is craziness myself. Of course you will be on chemo or some other treatment, you have Stage IV!! I would suggest seeking out a cancer facility, especially one that may specialize in breast cancer. They are all over & I don't know them all, but I did have several second opinions & will continue to, depending on what's going on. One of them was at Dana Farber in Boston. I wanted to see an oncologist who had spent their whole career with breast only. Another one is Sloan Kettering, in NYC - but they are all over the country. I'm sure someone could help point you to one on your side of the country.
In terms of dealing with side effects from chemo - there are many meds to help with the nausea/vomiting, etc. Do not keep silent - you need to find the right combination for yourself. The premeds they give IV b4 chemo are important & can often offset many of these symptoms. Then there's the possible constipation or diarrhea issues that can come - there are many ways to handle that as well - many solutions on these boards. Same with neuropathy, dealing with hair loss/wigs/etc., cold capping, on & on. So hand in there & stay close & keep us updated - I know everyone here will either have a suggestion or a place to point you to for the assistance you may need. I've been doing this since 2010 & there's quite the learning curve involved as most are mainly aware of the lower stage "curable" breast cancers & have no idea how this is different & ongoing. So down the road you will get a lot of questions as to when your treatment ends & all that kind of thing & a blank look (sometimes as if you are lying) should you indicate treatment is ongoing. I remember when my tax person thought I was making it all up because I "looked so good." Really hurt my feelings, but I understood on one level. Then, sadly, 2 years later ended up with lymphoma himself - doing well though - but he "looks good" too! Needless to say, he was very apologetic.
Anyway, enough from me. Hoping to hear good scan results from everyone as well as my own! Happy Spring, (still in 20's here!)
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Great info SyrMom...stage 4 is a daunting place to be, but you've definitely paved a road for our new sisters. I'm sorry you're still having such pain. As far as scans not showing a definitive cause...I think you're right that chemo can makes us susceptible to injury/pain with the slightest movements...ones that, in the past, seemed normal. I was always on hypertime....constantly taking a mental note of how I felt-whole body-wise, trying to regulate life according to how I felt doing everything. Is it possible you've overdone activity without considering it stressful to your body? I think the horribly cold weather can't help but add to the soreness...20 degrees in March is not right! Thinking of you!
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Oh yes, Woody...it's been too busy & I don't see it getting too much easier. Now, I add a new dental crown. I'm losing my cobra ins (dental/vision) after 18 months so dentist is replacing an ancient crown. Since ins ends 3/31, I need 2 appts til then...but at least my teeth/gums are healthy! I think headaches are allergies..but recall does stink! Vision is blurry...allergies??? I don't see the onc for a few weeks but dexa is 4/1. Don't think scans til May. I saw Bestbird posted of a webinar tomorrow. I wanted to listen but busy during eastern time. I did watch the VICE show...so glad you told me about it. My onc keeps talking about a vaccine....hopeful always!!!
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Syrmom,
Great info for all those who sadly joined us lately , but what a wonderfu and hopeful way you put it! I am so happy you are geeling like yourself again and happier with your news. I hope you soon finf out what is causing you this pain, i happen to agree with you about chemo and pain.
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Ronnie,
I am glad you are that busy, but please do not over do it and tire yourself. Evem though your headache may be due to allergy , still i would inform my doctor when i see him
. I am so happy you found VICE. As hopeful as i saw it, even though they do not mention BC. Still plenty of hope to a lot of people with incurable diseases. I am going to lebanon for my perjeta , i leave saturday and come back on the 30th. The funny thing is after i made all the arrangements, they called me next day to tell me it is now available lolll. But since my hear was set on seeing my son , so i am going
)) xoxoxoxoxo -
Im new here in this group, recommended by penny. I was dx with mets to the liver on Tuesday and oncologist wants me to have cyberknife ASAP. He thinks that can eradicate the two small lesions, but the cancer will always be in my body since it spread???
Has anyone else had Cyberknife? I'd like to know what to expect....
My full pathology came back today and I'm no longer estrogen positive. My oncologist did say that they are retesting HER2 (not sure why), other than that, he thinks I'm triple negative now and told me it's no longer necessary to keep taking my Aromasin.
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Hi bonski!
Go for the cyberknife! I haven't had it but would in a heart beat if it was offered to me. I hope and pray that is is very effective for you, especially as your mets are still small. Your onc is right. Once the horse has bolted he is more difficult to deal with. Only about 1% are cured once they get to stage IV but many, many here have lived with liver mets for years. You only have to read through the forum to see this has happened more times than you would expect.
Your dx sounds similar to mine. ER+ at primary at primary diagnosis and TNC when I had my bone biopsied for my stage IV mets. I took arimadex (anastrozole) for three years and was told I should discontinue once we knew the ER status has changed. It clearly wasn't influencing my cancer or I wouldn't have gone onto develop mets.
Your onc is retesting for HER2 as it can change status from negative to positive and visa versa. I have read that this particularly true with liver mets, occurring in about 25% of cases. Being Her2 +ve can open up a whole new lines of therapy which has been shown to be very effective.
Good luck and please let us know what the cyberknife was like.
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Benjnate,
How did the viewings on your property go? Have you had the results of your whole body scan come back yet?
I think you are doing the right thing moving nearer your family and doctors, particularly if the winter weather is bad.
Ronnie, You are so busy! I would check with your drs about the blurry vision. If you have had it before from allergies than it likely to be the same cause again. My eyes have been very dry and itchy. 80% is probably pollen allergy and 20% chemo, I think. It does make my vision blurry at times. With all our concerns of cancer, we can lose site of the fact that we can still get the run of the mill illnesses, such as cold, flu and allergies. You mentioned zero lymph from your previous biopsies. Researchers are looking into this. The theory is that having lymph nodes is a positive. Lymph nodes are doing their job catching these rogue cells before they spread. So now they have started to ask what is special about the cancer cells from people who have stage iv but no lymph node involvement and if they find the reason, could it become a new way of treating the disease?
SyrMom, Are they going to do anything for you apart from the titrated steroids? Sorry you are suffering.
I saw my orthopaedic surgeon yesterday. He wants me to have a CT scan of the fracture in my pelvis. The radiologist's report said it could be a fracture or it could be a recurrence of the cancer in that area (inflammation). It was a known met site when I was first diagnosed. The surgeon is pretty sure it is an insufficiency fracture from the disease and previous radiotherapy to the area and the radiologist is just covering himself by suggesting the CT to get a differential. The MRI of my femur showed NED so that lends weight to the fracture hypothesis. I probably won't get the result until after the weekend. He is in OR all this afternoon and evening.
Anyway, I now have a whole 5 wks off treatment. Next week is the normal week off in my cycle. Then two weeks off before surgery to let my bloods recover in preparation. Another two weeks off after for a bit of healing. it is the longest I have been off treatment! I have a whole body MRI on Monday to see how the gem/carbo is working but as I feel reasonably well, I am hopeful. My eldest is coming for a visit next week and staying until after Easter. She has morning sickness and is really suffering with it. They sent her home from work twice this week. Running around after my 3 yo grandson isn't helping matters when he is not in nursery and she needs to rest. I am trying to be sympathetic but I may not be doing a good job. I am getting excited by the prospect of a new grandchild.
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I didn't get my Navelbine yesterday - neutrophils were low (not overwhelmingly low but too chancy for tx). So I don't like the fact that I had to miss a tx. On the other hand, I'll have more energy for stuff that I need to do. Our holiday of Passover is coming up, and in preparation we clean the house of EVERY CRUMB of leavened food - think spring cleaning on steroids. I've hired someone to help me but there's a lot I do also.
Sppringwatch, enjoy your tx break. And enjoy your grandson and the anticipation of another one! Grandchildren are THE BEST.
Leah
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Hello All - Well I am leaving the Adriamycin world and onto the Halavan (Eribulin) world. I was only on the Red Devil for 10 weeks (of hell, can I just say!!) but I'm sorry that I blew through another one so fast. SyrMom, I see you posting on the Halavan page and you give me inspiration! If we could just get those cancer buggers out of your bones, you wouldn't be doing too bad at all - and I absolutely agree that the Adria caused more harm than good in terms of pain/weakness...
I am getting a 3 week break before I start the Eribulin. That will give me time to really start packing for my move. Of course, it creeps me out as to what my body is going to decide to do with those 3 weeks - oh please, behave my dear liver! I am getting a liver biopsy next Friday so hopefully that will provide some insight as to what is going on. Oh yes, getting a little radiation to my upper thigh and pelvis due to pain. The party just never ends...
It's snowing like crazy here dear ladies, and I've got to get to the grocery store. And not just for bread and milk - the older son is coming home for the first time in 2 months so I need REAL groceries! Have a lovely weekend!
Laura
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Bonski88 - Anne, who used to come on this site, had a procedure to her liver met call SBRT (Stereotactic Body Radiation Therapy) and believes she is now cured. Is SBRT the same as cyberknife? Check out her website: http://www.butdoctorihatepink.com. Maybe she has a "contact me" link and you can ask her. I've had 2 RFA's (radio frequency ablations) and 1 series of Sir-spheres (Y-90). I will find out how the spheres did at my scan this Wednesday. God Bless you.
- Penny
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Laura, sounds like a good plan in place. I think compared to the Adria, you will find Halaven a bit more tolerable. For me, just getting my appetite back and enjoying food is a huge plus. Of course, we are all different.
Bone scan results showed lots of progression in area of ribs, so in for RO consult - still not convinced that's the cause of pain though, but will see & go through the motions. I'm not giving up Halaven for radiation, though.
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thanks to those who have replied....I'm new to this so I'm thankful for every bit of information
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Benjnate,
Sorry to hear that you blew through Adria and I hope Halaven works and is more tolerable. I had epirubicin when I was treated for my primary and hated it. As epirubcin is supposed to be more tolerable than doxorubicin, I can understand why you found it hellish. Take it easy with all the packing! Try and enjoy your short break before you start Halaven. Good luck with the liver biopsy on Friday. I hope the liver mets behave themselves while you are off treatment. Fingers crossed you get pain relief from some additional radiotherapy to your pelvis and femur.
SyrMom, Sorry that your bone scan showed progression in your ribs. What do you mean when you say give up Halaven for radiation? Do they make you stop chemo for rads? My onc has had me doing both simultaneously.
The CT scan of my pelvis ordered by my orthopaedic surgeon showed met activity at the site of the fracture. I have a whole body MRI later this morning ordered by oncologist to see how well the gem/carbo is working. The surgeon and onc have already spoken to each other. My onc wants to see what the MRI shows. The radiologist who read the CT is a generalist and doesn't see that many cancers, whereas the the radiologist who will read today's MRI is a specialist in reading MRIs for cancer, so we shall see. If it is cancer, the onc will arrange some more RT to my pelvis. The surgery is still booked about two weeks from now no matter what. Although I am apprehensive about the op, I am more frightened knowing that I am moving around on a leg which has a newly opened femoral fracture and is only being held together by a rod which we know is bent or broken! For now, I just need to get through today and the usual scanxiety.
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Springwatch - I can feel your tension right through my computer. Let's just get this done and you'll feel so much better knowing what's going on and if the original plan needs to be adjusted. Cyber hugs for you today, dear friend. Deep relaxing breathes and just go to your happy place...(for me that's remembering my little ones running in and out of ocean waves. Even the techs will catch me smiling sometimes)
Bonski68 - I know this will sound crazy for all of the emotions you are going through, but you are fortunate that your mets were caught early and they can ablate the liver. This wasn't offered until the past 2 years or so or I would have had it in a second. I was diagnosed in 2009 and honestly it is a whole new world for us and you have many opportunities that some of us with mets longer don't. I wish I could reach through the computer and hug you too, you're going to be fine. A whole new world? Ah yes, nothing will be the same. It's just a new normal.
Thanks everyone else for the kind words. I've shown my house 4 times already. Older son is home from college for a few days and i'ts looking pretty disheveled, hoping the realtor doesn't call to show the house for a few days. Interesting how when I get stressed about major things like high school son graduating and off to college, older son moving to Denmark to study this summer, selling house, moving 2 hours away, then the liver decides to act up. Hmmm....Even good stress is stress to this body.
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I was initially diagnosed stage 3B - did dense dose chemo, surgery, and radiation - 3 weeks after radiation I got scan results showing spread to my spine - now spine, pelvis, and alas, liver. But my reason for posting - at that time I decided to get a second opinion - I called myself directly to Stanford Breast Cancer Center and also UC San Francisco Women's Cancer Center. They were both willing to make an appointment for me and all they wanted was for me to sign a release so they could get my records. I do have medicare with AARP Plan F, which is good insurance, but I cannot imagine that any insurer would prohibit a 2nd opinion. Do you have a major med school/university near you? Not only were they willing to see me but they gave me appointments within a week of when I called. Someone else suggested you go through your primary care doc, and that might be a good idea. All of this is so stressful without having to fight to be seen or to gather the information you need to make informed decisions.
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Dear apackoftwo,
Those records are yours, you have a right to do with it as you please, and you are entitled for a second opinion. Nobody can deny it for you. Sign a release, let them worry about it, but you don't, you must to concentrate on healing. hugs and be strong.
Going for a biopsy/RFA tomorrow, wish me luck
Cheers,
~E
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Hi, all! Haven't been on in a bit and see lots is going on. I was given a month off from Navelbine because I started having cardiac artery spasms again. Thought that I would start to regain my strength and try again. Unfortunately, I had another artery spasm and another trip by ambulance. My poor husband is at his wits end, too. All of my cardiac tests have been good, so that's a good thing...echocardiogram is good and no damage to heart. Now we just have to figure out why they keep happening. I've started using Ativan and deep breathing when I first start feeling "wierd" and that is working for now. They think I may now be having panic attacks cause I'm so scared I'm going to have another spasm. Saw onc today and he agreed another month off from chemo will do me more good than harm and I am slowly trying to get my life back. I refuse to let this fear take over everything!!!!
A bright spot is that my brother has come all the way to Texas from Maine to spend a month with me (course the warm weather may be a little extra incentive! lol) and my other brother whom I have not seen in 30 years is coming this week, too. I am so excited to have the both of them here!!! I'm going to stay on my ativan, pain meds and amlodopine that they gave me in hopes of preventing the spasms, and try to just enjoy the time I have with them.
My love and best wishes to all...I will catch up on reading up as to how everyone is doing tomorrow...in the meantime, sending hugs and prayers to you all!!
Debbie
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Chichi, sorry to hear about your artery spasms, dang! Frustrating indeed!! Glad to hear despite it all you are feeling good, though. Hang in there & enjoy your family time & warm weather. Still snowing in upstate NY!!
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Thanks, Syrmom...my brother from Maine is soooo happy to be away from the 6 foot drifts and below zero temps...wishing you Spring!!!
Penny - sending prayers that your results are good after the Sir Spheres
Springwatch - Hope you are enjoying your break from tx...and a new gandbaby! Woohoo!! Excited for you!
Bonski8 - welcome to our club. You will love all these ladies and learn alot. I, too, became triple negative with the biopsy on my liver mets and went off anastrazole. Am taking Navelbine and it is working really well on the tumors...I wish the same for you.
Woody - So glad you are going to be able to spend some time with your son. Can't wait to hear back from you.
I know I have gotten to everyone, so I'll just send my hopes and prayers to all of you for a blessed week and good results for us all!
Debbie
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Had a scan this morning. The left lobe of my liver looks good, thanks be to God! That is the side that the radioactive spheres were put into @ 3 months ago (12/23/14). The right side is still hard to read due to it only being a few weeks out from the procedure. The doctor said that's normal and he will know more at my next scan in May, however, he thinks he sees little lesions that weren't there before, but again, it's hard to tell at this point. Next week I meet with my oncologist to see what she wants to do. I feel like I'll never make it to NED (No Evidence of Disease) and that "mixed results" or "progression" will always be my scan results. Not trying to be negative or pessimistic. I've been at this for almost 5 years now and realize that my cancer is quite combative, not that not all cancers aren't. It's just that mine happens to be made up of particularly aggressive stuff. I am so grateful to God for His Strength to carry me through this long. He has made good things happen from a bad situation. Praise Him!
:-) Penny
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Penny, Hopefully the scan in May will show a good response to the spheres you had put in recently and your meeting with your onc next week goes well. You have the strength to see you through another five years and more.
chichi, Sorry to hear that the arterial spasms have reappeared. Enjoy your extended chemo break and your visit from your brothers. It sounds like it is going to be fun for all of you to get together again.
Ella, Hope your biopsy and RFA went well yesterday!
I finally got my MRI results back which was ordered to see how well the chemo was working. The report came back showing further regression. Bones are stable. There has been more shrinkage in the liver mets; about 40% more. Was so excited I forgot to ask about my lung mets. I will have to check when I get the report but I assume they were unremarkable. The MRI was read by a specialist radiologist and he doesn't think there is active tumor in my pelvis - he thinks it is dead tumor. The orthopaedic surgeon had ordered a CT scan and the results suggested active disease. It is interesting that the two types of scan and the two radiologists didn't agree. I believe the MRI more than the CT. I have always had MRIs to monitor my disease and the same radiologist to read them each time. He is an expert in reading MRIs for cancer. All this means that we can go ahead with the surgery to replace the rod in my leg in about 2 weeks and I am going to carry on with gem/carbo after the operation. So pleased and happy as this is the first chemo that hasn't failed after just 6 cycles, like taxol and Xeloda did. Although to be fair the taxol did work initially. Xeloda did absolutely nothing. It was was fuel at the wild kegger party my liver mets had last year.
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Springwatch - we'll take the MRI over the CT. Yay! Thanks be to God! Penny
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Springwatch - you cracked me up at the 'wild kegger party' comment you envisioned your liver mets having, as I think that's what mine are doing now being off chemo for three weeks. I am so happy for you that you can get the surgery and hopefully by summer you'll be feeling much better. Chichi, I'm glad you are enjoying your family - that always makes me feel better. Red Wolf, please don't be sad about the elusive NED, I'll be 6 years with stage 4 in June, I never got to meet him and never will. Stability, or close to it, is good enough for me.
Going to get my liver biopsy tomorrow
Have a good weekend everyone!Laura
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Happy Dancing, Spring!!! I would definitely trust the fella/gal that knows what your previous scans looked like!! So happy for good results, so let the surgery & healing begin!
Chichi...I can understand the thought of spasms due to worry about another one! I avoided certain movements on Navelbine because I knew it'd lead to a cramp. These were my hands & feet...not my heart! Enjoy your break & your brothers...what a loving gesture to come see you!
Penny...I'm right there w/the other stable mates! NED won't be in my vocabulary but, I just hope/pray that we all are in this, supporting each other, for many years to come!!!
Laura...your plate is FULL!!! Didn't know son was traveling to Denmark...exciting! Mine just got back from a Hong Kong business trip. He wanted me to go & I politely declined but seeing his pix...oh my! (Still wouldn't have been 16 hrs in a plane!).
My back still hurts, I'm worried as ibup doesn't kick it...and that's rare for my "no pill taker" body. Bone scan next week. I'm a bit concerned about not seeing onc for 12 weeks...does anyone else go that long. Perj/herc every 3 weeks seems like 8 weeks should be ling enough. On chemo it was every 4 weeks. Just a little worried.
Sending cyber hugs & prayers abound for good scans!!!! Late to babysit!!!!
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Penny, your strength and your faith in God are an inspiration to me. Still sounds like most of the news is good with your scan. Can they do the spheres in the right lobe? Seems if it worked so well in the left lobe, that maybe you will achieve ned! That's where I will focus my prayers for you. Thinking of you and all these lovely ladies posting here!
Debbie
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Debbie - I actually had the spheres done in both lobes, one at a time. The right one was done the most recently so the IR says it's typical - all irritated and swollen from the spheres so it's hard to get a good read right now on that side, but he is pretty sure he sees some new little lesions anyway.
:-) Penny
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I posted a couple weeks ago, but I'll summarize and add what's new. I had an abdominal scan last month that showed the lesions in my liver have grown. They both are quite small, 1.4 cm each and the biopsy confirmed Breast cancer mets to the liver. My oncologist's recommendation is cyberknife treatment and I already had my first appointment with my radiation oncologist and now am waiting to have gold seeds implanted into my tumors. My tumors also changed from Estrogen+ to triple negative. My oncologist is not recommending chemo....said that there have been studies that show its not effective and only makes the person suffer. It's not like I'm looking to feel miserable again, but I want to have a better chance to keep the mets from returning if cyberknife is successful.
-Are you told what grade your tumor is or does that only apply to the primary cancer?
-Who has had cyberknife treatment and how effective was it?
-Should I get a second opinion regarding chemo or has someone else been told that chemo isn't effective?
-How do I get a second opinion (if I chose to get one)? Does it cost anything or is it covered by insurance (I have Tricare Prime)
-Has anyone gotten a prognosis? My oncologist said that cyberknife can cure me....I'll still be officially stage IV but it was caught early. I have read multiple times that life expectancy doesn't matter if mets has been found early or if you become symptomatic, a reason why they don't do regular scans.
-For those of you that are NED, do you get regular scans now or is it back when you were 'cured' with your primary and only get scans if you are symptomatic?
-Is anyone aware of a facebook support group? I find fb to be much easier to keep up with.
Sorry for all the questions, I hope someone can help me out with some of them.
Bonnie
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Bonskie68,
I read your post a while ago, and i am glad you are a candidate for a cyberknife procedure. I personally am not. But to answer your question if your cancer is the same as the primary ususally it is the same grade but it might undergo some changes such as becoming hormone negative or HER2+ . If you are triple negative to my know ledge chemo is the only way to combat it. Even if your cyberknife is succesful, the tumor is in the liver which means it is circulating in the blood. Therefore, he should use chemo even if the procedure is successful , but if there some cells lurking around chemo should be able to control them. As i see you only had one line of chemo . Telling you he will not use chemo is very strange. I would advise you to seek urgently a second opnion from a good reputed cancer center as soon as possible.
As for the insurance i cannot help you since i am not from the US but i am sure one of the ladies here can advise. Good luck on your cyberknife and i hope you get good advise so you can be treated properly.
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Spring,
Wonderful news , and with God's speed to your operation and to an early healing process.
Chichi,
Hood to hear from you as usual , sorry for your heart spasms and i hope it is only an anxiety case . So happy for your family reunion , have a grand time with your brothers and come back to tell us about it. I am still back in my country had my session here . I severe issue with diarrhea which prompted me to be hospitlized for three days , but i am well now and spending the rest of the few days i have with my darling son. Enjoy your break and your time ! Xoxoxox
My dear Penny,
I am glad your SIR-spheres worked and hope when the second one heals shows the same results. Your faith and belief in God is an inspiration to us all , and like RonnieKay , i hope we are here for a long time supporting each others for years to come. Hugs.
Laura,
Enjoy your break from chemo while it lasts and your family and have a blast .
I hope your son enjoys his time in Danemark and pray to God to keep hom safe.
RonnieKay,
I went three months without seeing my onc but only when i was in adjuvant therapy but was told by him that if i feel anything i should inform him immediately and he was reachable at all times. I do hope your back is bette rand that ibubrufin is enough i know how much you hate pills. But i also know how busy you are all the time and active so give your back a break so it can rest for a while and if it keeps hurting then check with your doc again and again.
I hope i did not forget anyone, cyber hugs and prayers to all !
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Laura, It took 18 weeks for my liver mets to go from 5% of my liver involved to 40% involvement. So it didn't happen in overnight. I think you will be OK with just 3 weeks off before starting the new chemo. I will keep my fingers crossed that eribulin works for you. In the meantime, I hope you are enjoying have your boys at home. I hope they are helping with the packing!
RonnieKay, I hope you can get some pain relief for your back. I hope that the bone scan shows nothing going on and that the pain in your back is just muscle spasm or something similar. If your son offers to take you to Hong Kong and you feel up for it, you should go. I have been twice. I know someone who lived out there and they described it as 24 hour Disneyland and of course, the Chinese food there is the best.
I see my onc frequently. He has all his chemo patients in on the same day for treatment and comes in to review their blood work and side effects on a weekly basis. He is occasionally away on vacation or attending lectures but the nurses have said that he is always available by phone, if needed.
Bonski, I would get a second opinion on the chemo. Triple negative means the only options you have for treatment are chemo and radiotherapy. I understand that your onc is hoping that the cyberknife will deal with your still small liver mets but I would want the chemo after having cyberknife to mop up any circulating tumor cells before they have a chance to find a home elsewhere. Unless I develop new symptoms, I have MRI scans roughly every 18 weeks. I did not have any scans between finishing treatment for my primary and developing pain with bone mets. I am very fortunate that my oncologist is able to refer my case to the clinical lead at the center where I am treated for a second opinion, if needed. This oncologist has 25 years experience in breast cancer and comes with some impressive credentials, so I trust his advice.
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Bonski - I sent you a PM, hope the info helps. I just didn't want to put names of people on FB 'out there' to the general public.
Penny, I was sorry to read the last sentence of your comment. How I understand the procedure is that you are still a candidate for many other procedures along with different meds, correct? I'm praying for the best for you Penny.
RonnieKay, so glad to hear you're getting your back checked. Good or bad news lets get something done about it so you can continue loving on those grandkids!
Funny you should mention about my plate being full....I went to see my good ol' family doctor one more time before moving and all we did pretty much was talk. He brought up an interesting point about my cancer: (almost) 6 yrs ago when I was first diagnosed, I had left husband, bought house, raising 2 little boys alone, etc etc and the stage 4 came out of nowhere. Here I am now with youngest graduating high school and literally leaving the day after graduation to work in NY before college, my oldest studying in Denmark for 5 months, me selling my house and moving 2 hours away...and my tumors are getting out of control for the first time. He and I both agree that stress doesn't CAUSE cancer, but after it's out, stress can certainly contribute. I don't feel that is correct for everyone, but I do for me. Anyone have any thoughts on that? I would love to hear. Oh and the liver biopsy was uneventful, let's hope it was worth it and we get some good information.
Love you all,
Laura
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I used to think that the theory that stress causes cancer was flawed. Who doesn't have stress? Then my mother passed away - and in the year following my bone mets went from one lesion in my sacrum to lesions in different vertebrae, hip, and rib. Then almost exactly a year after my mother's passing I lost my father. Six months later cancer was found in my liver, and the bone mets went to my other hip, more vertebrae and more ribs. Stress causing cancer? I still doln't think so. But a contributory factor? Hmmm.....
Leah
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I don't think stress causes cancer but I do think it can make things worse. My mets diagnosis came 17 months after my mother died, although I had symptoms of bone mets before then. I know one person who had a very messy divorce and was diagnosed with mets only weeks after completing the paperwork. I don't think a link has ever been proven but the inflammatory response to stress is well known. Maybe along with chemo we should all be taught relaxation techniques.
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Hi Ladies, I am so glad to find this liver mets page. I was recently dx with liver mets. Soooooo scarey! I was first dx in 2010 with grade 3 stage 3. Then stage IV with lung mets and now the liver. Looking for hope, ideas, and support and need to see that you can live with liver mets! My oncologist put my on Faslodex injections. Hoping to find something to kick those liver mets right out! HELP!!!!Cathy
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Welcome Cathy, lots of wonderful people here living active lives with liver mets and lots of information on treatments, strategies to deal with the stress of both finding out and living with the ups and downs. I don't have the same diagnoses as you but my mets, found over a year ago, are for now NED. Seems like there are new ways to attack the beasties so many different treatments for the women here. Sorry you're finding yourself on this thread and hoping for the best for you.
Michele
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Thanks Michele - Really appreciate hearing positive things right now!
Cathy
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Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Seems like lately everything we do, the cancer takes and uses it to have a party. Appointment with oncologist on Wednesday - should find out next plan of action. Praise God I've made it this far!
:-) Penny
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Penny, I'm so very sorry. I know the feeling so well. All I can say is "hang in there," as you just never know
what's around the corner that will make the difference. My heart goes out to you.Also, have you had second opinions by any chance? Sometimes another set of eyes is a good thing. One of the many times I was where you are now, I went to Dana Farber to see an oncologist whose whole career was breast cancer only. You just never know what they might have to offer.
Regardless, cyber hugs to you!
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Sorry to hear Penny. Sighing with you. I too know the feeling of progressionCathy
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Penny , i am so sorry about your latest news, i know how it must feel. I, like you thank the Lord we have made it so far , he is our rock and he guides through all things. I hope your doctors are inspired to tell you what is next for you and may it be the right choice. Like Syrmom , i agree , you really never know with this disease , alll things are possible. My prayers are with you always. Big cyber hugs.
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Penny, I'm so sorry to hear about the progression. I hope your docs come up with a great tx for you.
Leah
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Penny,maybe for a second opinion you need to come to NYC to consult with my oncologist, he is working with Dr. Larry Weisenthal, who is really making a difference and able to treat even patients on hospice.It is about chemo sensitivity.here is the link http://weisenthalcancer.com/Home.html
I had a surgery on Tuesday,home since Friday, he took one tumor out for chemo sensitivity, and the other one he RFAed, there is one more, but its unreachable, sigh, but i need chemo anyway, still in a lot of pain, oxy gave me very bad reaction, so Tylenol it is. if you are interested I am happy to answer all the questions.
~e
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Penny, let's see what your Onc says on Wednesday, thank goodness you don't have to wait too long. Please let us know what the plan is as you have a lot of people on this board that care about you.
Laura
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Bonnie, I saw you inquired about Facebook groups. Not sure if there are any young women in this thread but if so, there is a Facebook group for Stage IV'rs under 40 searchable under "Stage IV Metastatic Breast Cancer Warriors Under 40". A lot of women from the Young Survival Coalition are part of it. It is a closed group but not secret, so people are able to see who is a member but cannot see posts within the group. Wanted to throw it out there in case it applies to anyone here.
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Penny, So sorry to hear about the progression. Your profile doesn't mention which chemo/s you are on or have been on, so I took the time to look it up. How did you do on Navelbine? It has been zapping those liver mets left and right for me.I started 3 weeks on and one week off, but reduced to two on/two off and have been doing better. Because of complications with emphysema/pnuemonia and then those pesky heart spasms, I'm on a two month reprieve from chemo, but will start back on April 30th. You are constantly in my prayers and your great faith is such an inspiration to me I too praise Him that he he has given you this much time and I continue to ask Him for many more years for you. Each day we stay alive, a new treatment is being made available. Please hang in there, my friend. We are all here for you. Don't forget to let us all know what onc says on Wednesday.
Many hug, Debbie
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Woody,
Glad you are able to spend a few more days with your son...our "babies" are such a help to us when things are rough. Sorry you had to have some time in the hospital and praisng God that you are now out and feeling better. I am enjoying time with my brothers...it's the first time the three of us have been together in 30 years! Took a couple days trip to Big Bend National Park...the desert is in bloom and beautiful...neither of my brothers have been, so it was especially nice to share with them. Still have another week to spend with them and are relaxing at home and showing some of the local sites. Thanks for remembering!
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Thanks JFL, but I'm in my mid 40s now and don't want to join a group that is not within my age group. I guess there is a reason they have an 'under 40s' group.
I do appreciate your reply
Bonnie
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Having a hard time after finding out about my liver mets. Took an Ativan at bedtime for first 3 nights, it helped a lot to feel better and get some sleep. However due to it being so highly addictive I just took a Trazodone (non addictive sleeping pill) the next night. That night I was ok but the next day (yesterday) the anxiety was unreal with a touch of depression I think. Last night I took another Trazodone to sleep and was ok till this morning. More issues filing for my appeal of CPP Disability today and that gives me more anxiety issues. Finding it so hard to cope I called my doctor, see him tomorrow. Receptionist will send him a note asking if I'm ok to take another Ativan in the mean time to help till I see him. She will call me back hopefully. Lord! the stress that comes along with this diagnosis! I'm sure I'm not alone here! Feeling the pressure and this is not like me normally!Cathy
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Debbie - besides not working, navelbine landed me in the hospital twice with low counts. Tomorrow's the appointment with the oncologist and I'm very stressed about it, to say the least. I should be focusing on all the milestones God has let me be alive to see and do, but instead all I do is go to that dark place in me where all I can do is think about the end and the suffering and the things I'll miss out on. I am definitely not myself right now. Meds are not working.
Penny
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((((((Penny))))). I am am so sorry that you have had progression with your liver mets.
You mentioned that you had trouble with low counts when you tried navelbine/vinorlelbine. I found the info below about administering a reduced dose of this drug. You could ask your onc if it is possible for you to do this.
Dose Adjustments Based on Granulocyte Counts:
If the granulocyte count on the day of treatment is greater than or equal to 1500 cells/m3, then 100% of the starting dose may be administered.
If the granulocyte count on the day of treatment is 1000 to 1499 cells/m3, then 50% of the starting dose may be administered.
If the granulocyte count on the day of treatment is less than 1000 cells/m3, then do not administer. Repeat granulocyte count in one week. If three consecutive weekly doses are held because granulocyte count is less than 1000 cells/mm3, discontinue vinorelbine.
For patients who, during treatment with vinorelbine experienced fever and/or sepsis while granulocytopenic or had two consecutive weekly doses held due to granulocytopenia, subsequent doses of vinorelbine should be as follows:
If the granulocyte count on the day of treatment is greater than or equal to 1500 cells/m3, then 75% of the starting dose may be administered.
If the granulocyte count on the day of treatment is 1000 to 1499 cells/m3, then 37.5% of the starting dose may be administered.
If the granulocyte count on the day of treatment is less than 1000 cells/m3, then do not administer. Repeat granulocyte count in one week. If three consecutive weekly doses are held because granulocyte count is less than 1000 cells/mm3, discontinue vinorelbine.
Dose Modifications for Concurrent Hematologic Toxicity and Hepatic Insufficiency:
In patients with both hematologic toxicity and hepatic insufficiency, the lower of the doses based on the corresponding starting dose of vinorelbine as determined above. -
tryn2staycalm - I completely understand what you're going through. I was diagnosed about 3 weeks ago and have been on an emotional roller coaster. Some days I feel like I can handle this and am ready for the fight and the next minute I am crying uncontrollably. I keep trying to look to my Faith and trust in my doctors but I keep getting pulled into a dark hole when I'm least expecting it. My son who is only 2 is having a hard time when I leave in the morning and doesn't want to leave the house. I feel like my emotions are putting my family and friends through an even harder time and I need to pull it together but I just can't seem to get in a stable place. The Ativan definitely helps but I am also afraid of the heavy narcotics. I don't need an addiction to fight on top of an advanced cancer diagnosis. I was thinking of trying to talk to a therapist but that's also another expense on top of the expensive cancer. I'm hoping it gets better with time but knowing what we have ahead... I'm not so sure it will. I'm starting to think this Stage IV cancer is more of a mental battle than it even is a physical one.
The thing that has been helping the most is to know that treatment is good and getting better and we never know how long we have so keeping a positive attitude and enjoying every day is what we have to do. Good luck to you.
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Hi everyone. I started my clinical trial yesterday forADZ4547. I have been off chemo for 8 weeks and my scan last week shows that my liver lesions have not grown. I thought this might give you ladies who are on chemo breaks a little peace of mind. During my 5 cycles of Halaven my liver lesions actually doubled in size. I find it very strange.
I am scheduled for another ct scan in 6weeks to see how things are going. Will keep you posted.
Good luck to all who are waiting for results. Keep positive.
X
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Chichiiii,
I am so happy you are enjoying your time with your brothers since it has beeen a long time since you have seen them last. I am sure this will be a great moral boost for you. Best of all you are getting out of the house , and this will let you focus less on your spasms . I wish in time you will be ready yet for another healing round of chemo. Big cyber hug for you .
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Mutherflush,
I wish you luck on your new trial and that you soon would post good results to us. My prayers are with you
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Cathy,
You are not alone! I take Klonopin for anxiety, Effexor for depression, and Trazodone for sleep. I've tried other sleeping meds but they only worked for about 4 hours (I have problems falling and staying asleep).
Unlike before, when I could make decisions with no problem, it now takes me a long time and I change my mind a lot...even for simple things. Even writing this takes me longer because I keep deleting and rewording things....I think it's all stress related.
I found out about my liver mets recently too. Just curious, how big and how many lesions do you have and what kind of treatment are you getting?
Bonnie
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Penny, I'm so sorry to hear about the news. Sending you hugs!
Bonnie
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Penny, think of you today & wishing you peace & hope.
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Josalive -Thanks so much for your response. It does help knowing I'm not alone feeling like this. However your so young and with a 2 year old. Seems not fair! My doctor did call me back and told me that I'm ok in this situation to take Ativan daily for up to 2 weeks. He will at that time see if I am over the hump or see if I need something more long term like celexa. Don't be afraid to ask for help. He said it is quite normal to feel the way I do. We shouldn't have to battle this without the help of drugs. Yes trust our doctors to help with this and our oncologist to find a tx that buys us as much time as possible. Good luck to you! What tx are you on?
Bonski68 - At least they have you covered for it all - glad to hear that. I am not sure about my size and how many.. just heard spots on liver, have lung mets too but very little change there than goodness. Treatment has changed to Faslodex injections and the shock set in. If that doesn't work then more chemo. That was about all I could process in one day. I have never been one to ask too many questions as maybe it will only make me feel worse. Just me.. others want to know it all. I may find out more as I can start to handle it. What tx are you getting? Good luck with it! -
Josielove and tryn2staycalm,
I am sorry you both had to join the club of liver metsters, but as you will see a lot of love and care here .
I understand you fear and inability to understand all this, it is hard but not undoable. Stage four is rollercaoster ride to all of us. There will be good days and bad ones. Somehow, we learn to live with it. Some are doing just that. You will get to this place , just give yourselves time to let the idea sink in. Being mentally strong is very important as it contributes to your well being and ability to endure. However, i do not see anything wrong with either of you taking Ativan , if you feel you need it. I take stilnox ( ambian) and half a xanax every night since 15 years, i only take them when i want to sleep. I never took at any other time. Some cancer meds will cause insomnia , i am an insmoniac by nature. So if you feel it is helping you , i think you should take it. Frankly addiction is not the problem at this stage. As soon as either of you start treatment, things will get better once you have the plan and know what is being done. It is a hard situation for the both of you soecially when there are children involved. I wish you both good luck on your upcoming treatments hoping they will be successful.
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Just met with oncologist. Waiting for my first infusion of Gemzar, followed by Herceptin. 2 weeks on, 1 week off. We shall see. Praise God I'm still here.
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penny, I hope the gemzar works! I am on it and find it a bit easier to tolerate than the carboplatin. It is working well on my liver mets.
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Hello Ladies...Wow...I have been out of the loop for about 3 weeks...2 of those weeks I was in and out of the hospital dealing with SE from Halaven....and my hernia....finally found out why I was having shortness of breath ...now on inhaler....had nebulizer treatment in hospital for 3 days came out felt awesome...had 8 days off from treatment...go in tomorrow for treatment...counts are up ....Wahoo...been have shots to get those up....
Had a awesome Sunday...was the Grand Marshal/Poster Woman for a Motorcycle event for cancer patients/survivors...over 580 bikes attended....I was so honored...and rode for the first time since I sold my bike back in July....The wind of God was so healing for me...
I am hoping and hugging to all my sister's here...that you are well..I have read most of the posts...but if I miss one day...I feel out of the loop...and I apologize for not keeping up with you all...sometimes sitting and typing is just not on my priority list when I feel like crap...But I miss and love you all...L&R Carla
See me ....See me...I'm in the middle with my mouth wide open...LOL....Just honored....Peace Out !
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Penny,
Much love and many prayers to you!!! I'm here (as I know many others are) anytime you want to vent! Praying the new treatments will begin working even today!
Woody - big cyberhugs right back at you! Am enjoying the time with my brothers. My husband is trying to surpress the joy of our reunion - a jealous man, even of my brothers, but we are enjoying ourselves nonetheless. Thinking of you and hoping all is well.
Welcome - (sort of) - to our new members. The weeks following diagnosis are some of the worst, but it does get easier to deal with as time goes on. I agree with Woody - take the Ativan as needed. I am taking it daily to help with the coronary artery spasms and not worried one whit about it being addictive. You will find so many great ladies here who will help you through - they sure have helped me! Love and hugs to all!!!
Debbie
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Chichiii,
Lolllll, men are like babies they tend to get possessive because they want all the attention ! I am so happy for you and your brothers to be able to spend time together after all these years , it must be amazing. I am sure your heart spasms got better
) and hopeful you will soon be able to go on with your treatment and dessimate those buggers. Meanwhile, keep having a blast and enjoy every minute of the attention you're getting from the men of your life . My son is coming home for four days today , to renew his resdency and will be going back monday , so i am happy. Big cyberhugs to you too with lots of love!! -
Awesome pic Freebird - lots of love in that photo! I'm so happy for you for the support you're getting.
Laura
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Thank your for your input and support ladies. Taking my Ativan. Waiting to feel like my old self again. Although I have been stage IV for 10 months (lungs) the progression to liver hit me hard. I seen my mother in law with same metastatic bc go to her liver. Brings back some not so nice memories. Am I right in thinking the survival rate for liver mets is shortened time wise? Trying to start educating myself. Has helped before. Good luck to all you ladies with your tx's and new tx's!Cathy
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tryn2staycalm,
Good for you if Ativan keeps you calm you should take it as needed not less or more. My advise to you is to be informed about liver mets , but do not go much into it or you would get lost and it will depress you. It is true that finding out you habe MBC is bad enough and having a progression to another organ is notconsidered good news. There is nothing in stage IV reassuring but people survive somehow. Visceral mets are worse than others. But again there is no some people live with and do better than others and others don't. My advise to you is to stay focused , take care of yourself , do not let the cancer take over your life and get a good oncologist , one you like and trust.
I hope you find peace of mind and inner peace.
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Freebird, nice pic glad you enjoyed the day and many more
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Josalive - your post says it all - thank you - I have bone, spine and one liver met. Currently taking Xeloda which has kept the bone situation stable but not working so well for the liver - will stay on 2 more cycles - one week on - one off and then do a scan. This has hit me very hard also - I am usually an articulate person but lately I feel frozen and although there is so much going on in my mind I can't seem to find the words to express it. So far, this has been a 3 year journey and I have managed to stay out of the clutches of depression - but for the past 2 months I seem to have lost interest in my life - I have been told that antidepressants are not allowed with Xeloda - if anyone has used Xeloda and an antidepressant I would appreciate hearing about it. Don't think I am going to kick start myself out of this one without some chemical help!
Though your post is sad and I wish none of us had to feel this way, I appreciate it - it is so honest. Thank you. Susie
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I am on Xeloda and have been on the antidepressant Celexa (generic form is Citralopram HBR) 20 mg tablests. I took 2 tablets once a day. I have since gone off of them but find myslef thinking I should start back on them. Chemo of all types changes the chemistry in our brians so we have a medical reason for having depression. it is more than just us having a hard time dealing with the realitiy of living with cancer. I thank my mom every day, who was a cancer counselor, as she was the one who told me it wasn't just in my head. So I would ask again. It does help with getting out of the rut. I am also taking Tykerb for my brain mets and I did fine on that with the Celexa as well.
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apackoftwo - I am on 75 mg of Effexor daily and that would be the LAST med I would ever give up as that is one of the reasons I feel I have gone on almost 6 yrs. The Effexor helps me be able to keep a level head (for the most part, lol). I was on Xeloda for a year with taking Effexor everyday - ask your Onc about that.
Those with liver mets, try not to fret so much. I've had liver mets since 2011 and although they are getting worse right now, there is still a lot we can do. Actually, if you're getting liver mets just now, you have more options that were not open to me even just a few years ago. Believe me, I wish they weren't in my liver but it just is what it is. But life goes on and is still very do-able.
Laura
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I agree with Laura. I have taken Wellbutrin for almost 5 years and it has helped me a lot. I have also taken a lose dose of Ativan, as needed, for the last 5 years and don't have any issues with addiction.
There is a lot of hope for those with liver mets. I was diagnosed almost 5 years ago with them and have been Ned for over 4 years.
Laurie -
Laurish - I'm curious to know which chemo helped you to reach NED. I've read this before, becoming NED with liver mets, it's so encouraging.
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I hesitate to call myself NED but my Ct of my body have no mention of liver mets or masses. My insurance stopped paying for PET scans over 9 months ago as the last one I had did not show any cancer activity. Since then the CT scans have never mentioned liver masses. My brain scans have been good as well (minus the scar tissue). I have been on Xeloda and Tykerb since 12/2012
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I was on Taxotere/Herceptin for 7 rounds, then had ablation on the one remaining tumor.
Have remained on Herceptin (also added in tykerb for a year, now have added in perjeta) since then.
I also did a her2 vaccine trial in Seattle a few years ago.
Laurie
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Hi Leftfoot - I am on Xeloda, working for bone, spine mets but not so well for liver. What is Tykerb?
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I like hearing 4 and 5 years since liver mets!Finding hope again with a calm soul is what it is all about.
Thanks again ladies,
Cathy
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apackoftwo- Tykerb is something that is used in tandom with Xeloda. I am on it for my brain mets.
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Leftfoot - I know, but is it another chemo med or something else?? Wonder why I am on Xeloda alone? Seems I have read quite a few are on the combo.
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Apackoftwo,
I was also on Xeloda alone , if you are Her2 negative , xeloda would be taken alone and if you are Her2+ then it will be given with herceptin, tykerb or something else which is her2 + only. Xeloda is a chemo ans since it is taken 15 days in a row , usually it is given alone. After the third cycle on xeloda they scan , if it is not working properly , the should switch to another combo. I got a mixed results it worked on some of my liver tumors but my hip bone increased in activity and on side of the liver also was not working so my onc stoped it.
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Hi Woodylb - thank you - I am her2- so that explains it - the Xeloda seemed to be keeping bone, spine mets stable but not working for the liver - so they increased the dose and I will have a scan in a month - I am dreading infused chemo again and I think that is probably the next step, so hoping the Xeloda kicks in for the liver - I have an appointment with a new oncologist on Thursday so things may change then without the scan - I saw a oncology primary care doc last month and she felt I was not with the right oncologist and she suggested I see this new one who specializes in bc - I liked her much better - we will see.
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good luck apackoftwo.
thanks Woodylb for the great explanation
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I got the results of the FISH test - negative. I haven't spoken to my onc about it yet (he sent the results in an email) so I guess it's Navelbine only for now.
Apackofwo, I went from Xeloda to infused chemo (Navelbine) recently. The worst part is going for the infusions. I'm finding the Navelbine easier to tolerate than the Xeloda (and absolutely NO COMPARISON to the tough chemo I had when I was first dx at Stage III). The once-a-week trip to the hospital gets old fast. I told my son I felt like cancer went from being my hobby to being my job. He said, "At least you have a job". Yeah, my kids have the same weird sense of humor that I have.
Leah
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Packoftwo,
You are welcome, i do hope the increased dose of xeloda effects the liver mets. You are rigth infused Chemo is really tough, but somehow whether infused or not it is all chemical and it being put into our bodies, to me does not make much of a difference as long as it works. Some of these chemos we do have less side effects others more. I hope you do no have to go through a lot of them. Somewhere the right combintion is waiting for you.
My prayers are with you to keep you strong and going.
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Leftfoot , it is good to hear from you and see you are doing well. Missed you on the board
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Leah,
I am sorry the HER2 results were negative in the matter of treatment options not the agressive disease itself. I want to ask you how high was your IHC? if it was 2+ which is equivoque then a CISH test would be worth it. If you have a hospital which can perform this test , i advise you to try and do it. Meanwhile i hope the Nevalbine would be doing a good job on your mets. My FISH test came back negative from Roche itself and from another hospital, yet when i aksed for a genomic testing they did the CISH along with it which came back completely positive for HER2. It is worth a try. Glad to know nevalbine Is being eaiser on you than other chemos. Keep us posted .
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Woodylb - are you losing your hair again? Part of my hesitation is I have a 2 1/2 hour drive on windy roads, each way, to chemo tx - once a month is hard enough - I just don't know if I have the energy to do it once a week - sometimes I think navigating treatment is more difficult than the treatment itself. What is a FISH test - I thought you had to have another biopsy to determine if cancer had changed to her2 - I have a new oncologist and hopefully this one will talk to me. Have an appointment with her on Thursday. It seems as if you ladies have so much more information about all this than I do. This site has been helpful - thankfully, due to the kindness and info here I am slowly feeling more positive. I hear you about cancer being a full time job - so far I have not missed a beat but wonder how long I can maintain the pace.
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woodylb- thank you. I had brain surgery at the end of February. It has taken a bit for me to recover. Hard to lose your mind and cognition. I am glad to have it back. Finally of the meds that were slowing me down and finding my stride.
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Apackoftwo,
Yes my hair fell on my first diagnosis but it grew back nicely. Then i lost most of it on my reoccurrence with liver mets , last year and the i started this combo i lost some of it but it looks fine and i didn't cover it. But in preparation i had bought a russian fur hat it is very warm and very fashionable. I know it feel bad to do the same thing over and over again it is depressing. But this is what is takes to beat up the beast. Two hours is a long way , can't you find somwhere closer? At least just a place where you can get you sessions.
FISH test is done only after the biopsy in done and they determine the kind of cancer you have, and if it is ER+ /PR+ it also shows af you have an eccess of a protein called HCI if this shows as 1- then you are HER2- and if it shows 2+ then they will check with a more sensitive test called FISH to assert or deny but if your HIC is 3+ then you are HER2+. In either cases it will give them more insight on how to treat you.
It is good you are changing oncologist , it is very important to be with someome you like and well read on the latest treatments and more importantly with someone with whom you can communicate , trust and be able to ask her anything you want. Ask her to explain to you all the things you do not understand. Do not be afraid of treatments no matter what they are and be a part of everything and if you do not feel right refuse it , it is your right.
Yes cancer at stage IV is a full time job but you will learn very quicly to live with and embrace it beccause you want to live. With time things will settle and you go into a routine and live and function like everybody else. I am not bilittling what we endure, i am simply saying the sooner you deal with it the better you will feel and the stronger to beat it God's willing.
We are all here to help you go through but of course we do not replace a good oncologist. Still anytime you want to vent, express anything need, we are all here to help and support.
My prayers will be with you so you find a doctor who gives you hope treat you well . Have faith it helps.
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Leftfoot, i am glad the surgery went well and that you are ok even if tired. If it getsyou good again thenit is worth it. I wish you a speedy recovery , so you can go back to normal again. Please keep me posted on how things go , in the hope we hear good news. Meanwhile, rest , get some of your strength back so you can fight this disease with all of us here to support you just to do that.
The lord be with you, protect you and get you a safe place. Hugs.
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Prayers welcome.
Don't know if I posted my latest treatment therapy since my last bad scan. Gemzar & Herceptin, 2 weeks on, 1 week off. 1st week I get both, 2nd week just Gemzar, 3rd week, nothing. I've had one complete cycle (I'm off this coming week - Wed the 15th). So my next schedule is both on the 22nd, Gemzar only on the 29th, off on 5/5/15. We have a family vacation planned for Florida 5/3/15 - 5/8/15. I just got an email that my liver enzymes have gone up since starting the Gemzar and wants to re-do labs ASAP. I pointed out that they've actually been progressively, but slowly, going up ever since starting Sir-spheres back in December, but this time, it was a big jump, in just a week's time, so I'm not sure what they have planned for me now. The oncologist had mentioned a couple of weeks ago that we could take the 29th off, if I feel I need/want better days to plan for the upcoming trip. Now I'm wondering if they'll just try lowering the dose. Think I read somewhere that sometimes that's tried until LFT's start coming down, then going back up to a regular dose.
Any input, anyone?
:-) Penny
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Penny,
The body always reacts to new elements or treatments, most of the treatments i went through caused my TMs to go up and then go down. Strange enough most chemos treatments affect the liver enzymes, if you read on their labels it says if you have a liver disease warnings. In all cases they cannot tell if the treatment is working before the third cycle is over . So i hope it is just a false alarm from the meds and nothing else.
I hope you go on your trip and enjoy it
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love that phrase
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Hi there,
Just got a word from my oncologist, he has a new protocol for me. It's Tykerb and Navelbine (every 2 weeks). I know a lot of you have a lot of experience with those drugs. Any input would be very much appreciated. Scared and anxious...
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Extremely apropriate wish Penny , last night lung cancer took my aunt , she was only 62 years old. So yeah i wish cancer got cancer
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Wow, Woody. So sorry to hear that. 62 is way too young. Actually, ANY age is way too young for cancer. Prayers for you and yours.
- Penny
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Thank you Penny, she is finally at peace with no pain, no sorrow , in a way i am glad the Lord took her fast because she was so scared of pain , and i did not want her to suffer, she was so,lively andnthese past months , she did nothing but stay in bed with pills to sleep.
God bless you and your family.
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Woody, very sorry for your loss.
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So sorry to hear of your loss Woody. I have lost many family members to this terrible disease. I too have lung mets but doctors say bc to lungs has much more to treat it with. Hugs to you.Ella - good luck with your new ammo against cancer. I have no experience with either but sure hope it works great for you.
Cathy
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Woody, I am so sorry to hear about your loss. May G-d send you comfort.
Leah
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Thanks Cathy
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Oh how I have missed so much....just myself got out of the hospital from a temp of 103.2 for 4 days...and met with OC today...and basically told he has heard of me wanted to stop the Halaven...well yes because of all the side effects...but told me...if I stopped chemo...it would take 6-8 mths and the cancer will have won...so I'm cont...the chemo...65% more chance to stay stable for a couple yrs.... and we are discussing how to help my "MIND" which is more of a SE to me since I live alone...and am doing this journey on my own...to stay in tune and in touch with the clinic...I freak myself out sometimes...but it just would be nice to have someone here with me to put my head on and be pampered....I have a great caretaker...but she leaves...and most of my thoughts happen in the evenings...Well just will have to get more strong will and tougher....and handle my thoughts better...and get distracted more...
I can't address everyone...to many of you beautiful woman to remember to address...but I am loving you and supporting the cause with my viral hugs...Love and Respect Carla
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Tryin2staycalm,
Thank you for your kind words , this dosease is taking so many sweet lives. But we always find comfort in God and people and friends who surround us.
I hope you are dealing better with your cancer, and hope your treatment does a good job . Hugs.
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Syrmom, thank you your words mean a kot to me. How are you doing on halaven? -
Syrmom, thank you your words mean a lot to me. How are you doing on halaven? -
Thank you Leah for your support it means a lot to me. God bless you and Yours.
How are you feeling on Nevalbine? I hope it is easy on you. Keep us informed.
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Ellamilana,
I hope Tykerb and nevalbine work for you. Good luck and best wishes. -
Oh free bird53 - I understand - I am also doing this alone - well, I have my little dog, Oliver, without whom I would not have made it this far - but I know how hard it is sometimes - especially keeping mind and spirits up. Although cyber company, you are not alone. Susie
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Dear Carla,I too am alone, lost my husband suddenly in 2008. I have a son who lives in another part of the home (we bought together as co-owners) but like you alone with my thoughts much of the time. I do have good friends and family but do miss my husband so much. I know the feeling, but we reach out to one another and support and be there to answer questions and search for peace and hope. I hope we all can give that to each other. Wish I could help more. Sending hugs to all. May God bless everyone of us and give us the strength we need.
Cathy
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sorry for your loss woody. I hate cancer.
Maureen
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Woody..I'm so sorry to hear that your Aunt has passed, but we know she is at peace, with a renewed body & spirit. I'm glad you were able to visit her...she may have waited for you.
Carla...hoping you're feeling better...such a trying journey & from your riding picture, I think you have a family of friends who I hope bring you joy! Remember to let them know when you need them...I know my friends are supportive & sometimes, when I feel most vulnerable from this mess, I'm so glad I have my family here.
Penny...so many examples of healing during times of raised counts...that's what we keep praying for!
Maureen...wishing you well tomorrow, when new tx starts!
Leftfoot...glad for the return of your brain power!!! You need it to keep your brood organized!
To all my sisters...trying to catch up...thinking of you all!!! And just when I think all our company has gone...more is coming!!! Back to the store.
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Freebird53 - I so admire you (and anyone else going this alone). My mother-in-law fought the beast for @ 7 years. She passed away in 2001. I never appreciated how much she had to handle on her own, which I'm ashamed of, because ever since my diagnosis, she's always on my mind. I have my husband to battle insurance companies, pharmacies, pay bills, etc., while I concentrate on getting better. But it just shows how strong you are - you do what you have to do because it needs to be done.
Prayers,
Penny
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A little change of subject - I have liver mets and am currently taking Xeloda, one week on, one week off, 1500 mg. morning and evening - no serious side effects except my hair is growing at a very slow rate and nausea. Since I am allergic to Zofran and all the other drugs in that category they have me taking Compazine and Ativan - the Compazine doesn't work and I worry about addiction problems with the Ativan - never had addiction problems myself but have strong family hx - therefore worry. So a friend in my town who is a nutritional consultant said given my age, stress etc. I may be low on hydrochloric acid production and to try taking HCLw/pepsin. I was so reluctant as everything you hear is that chemo makes the system hyper acidic - but a couple of days ago decided to give it a try - figured a few times couldn't do too much harm. It seems to be working wonders - no more nausea and the gas that has been very bad for most of treatment is resolving too. Has anyone else heard of this, or tried it? I wonder if I should call my onc to see if O.K. but as it is a natural substance the body makes anyway, I wonder if this is necessary. After 2 1/2 days, one capsule with each meal, I am nausea free. Would love feedback. Susie
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Lab work came back. Liver enzymes in the 200's. Bilirubin normal. Sigh. Thank You, Lord, for giving me a family vacation to look forward to.
- Penny
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Have not been on the board for a week, so catching up. I'm still working full time which is a blessing and a curse...at least it keeps my mind occupied with thoughts other than cancer and chemo! lol
Woody - So sorry to hear about the loss of your Aunt. I am thanking God that she is resting and at peace with Him. I've lost so many family members to this cursed disease - father, sister, aunts, uncles and grandparents. My only comfort is that I will see them again some day. How are you doing? I didn't read back very far...hope all is well with you.
Penny - Love your "Wish" you posted!!! Wouldn't that be wonderful??!! Glad you have a vacation to look forward to...ENJOY!
Freebird - You are stronger than you think...fighting this battle alone is not easy at all! Please know that we are here whenever you need to talk or vent or scream...I've been doing some of that lately! I agree that the mind is one of the worst se's - it's amazing how my mind creates more problems for me than even the chemo sometimes. I'm living on pain pills and Ativan to keep my sanity right now. I know things will calm down again eventually, but for now a girl's gotta do what a girl's gotta do! lol
I start back with Navlbine on Monday after nearly two months off. My onc let me take time off to give my body a break and a chance to heal. I'm praying that the chemo does not bring back the artery spasms this time...I've got my Ativan in hand! lol Will catch up with you all again soon. May you all have a great weekend!
Debbie
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Chichi,
Glad to gear from you and happy you are well. Thank you for your kind words about my aunt, i am glad she went peacefully without a lot of pain she was so scared of pain . I am sure her dear soul is in heaven woth the people she loved most.
I hope you are well rested and your spasms subsided . You will be on track for nevalbine and i hope this time with ativan your heart will tolerate it.
I am well so far, i will finish my six months of taxol/herceptin/perjeta in mid may. I will go back home around the 7th of may , PET scan and do the last taxol . We will decide after the scans how the treatment will continue.
I hope your first nevalbine after the break goes well. Hugs and prayers xoxoxoxoxo
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Saw this and wanted to post here. Hope all are having a good weekend!
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Beautiful
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Chichi,
It is so beautiful and so painfully true. God bless you for posting it. Thank you. Xoxoxoxox
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UPenn tomorrow. If liver numbers are elevated due to chemo, than they "should" be lower since I had last week off. However, if they're higher, than it's "complicated". Something tells me they'll be higher. Sigh. Haven't had good news in so long. Thank The Lord I feel good.
Penny
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Penny,
It's time for good news for a change! I'm praying and believing - Jeremiah 29:11 has been popping up all over the place lately and I am believing that i's meant for you, my friend! Thinking of you often!
I went back to onc after two months off from chemo. He will take some new scans to get a new baseline and see if the tumors grew since I've been off Navelbine. I had planned on starting chemo today, but I was a big blubbering mess for some reason on Monday. Seems I've been on a roller coaster of emotions over the past month or so and can cry at the drop of a hat. I've been irritable, too. and fed up with work. I've started thinking about why and I think maybe it has to do with coming off the hormone therapy. I had been on Anastrazole for more than two years and never went through a real menopause. Maybe that's what's happening to me now. The doc put me on a mild antidepressant (Citalopram 20 mg). He wants me to continue to take the Ativan when I'm feeling "spazzy!" and the pain pills are still okay to take for the chest "cold pains" that I continue to have. We will see what happens!
Blessings right back at you, Woody! And more to all of the rest of you lovely ladies!
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biopsy results. i am now triple negative from triple positive, very bad news... omg
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Penny , i second Chichimaine too. I prayed for you last night so that today your numbers will be good and so you take your dose. I hope we all hear your good news. I am glad you are feeling well . Good luck to you on today and God be with you.
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Chichi, good luck to you on your scans and i pray you are well and no progression of any sort. I beleive it is the combination of all meds which are making you more nervous. For me Ativan side effects will do that. So i do not take it much. Plus in your case if you haven't had a proper menopause it will do that also. Wait and see what comes up after the scan and all and if it still bothering you talk to your doc about adjusting the meds. Prayers are with you all the way. Xoxoxoxoxox
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Good Morning, Woody & hope everyone else is fast asleep. My early nap has me awake now, thinking, hoping for everyone's healing.
Penny...so much hope for your appt today to go well...to receive the news that treatment is working & your liver is responding, healing.
Chichi...it sounds like your onc is considerate of your emotional/mental journey...that's such a good thing. Just the mere acceptance of the disease, add drugs, as Woody says, it's hard. To still be working is amazing! I'm happy it gives you a release from thinking bc. I so wish I could be that same person from 6 yrs ago...firm underarms as well! Prayers that scans show no progression.
Ella...there have been more changes from negative to positive lately, so this takes my breath away. What will this mean for treatment? Prayers that your onc will have healing options!
Good night all....love & hope to all.
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Ella - my oncologist sometimes treats my cancer as if it's trip neg since the anti-her2neu agents don't work on me. It responds very well to chemotherapy. Keep the faith. Let's see what happens. Do you know what your next treatment is?
Prayers...
:-) Penny
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Ella,
I am sorry you biopsy showed change , but sometimes triple negative respond fully to chemo so chin up that you may be one of those. Prayers.
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Lolllll Ronniekay, i am awake whether it is day or night anyway with or without meds . My best prayers are at 3.00 A.M. This way i do not spend time thinking but instead praying for all of us. Xoxoxoxoxoxox
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Penny & Ella - my thoughts & prayers are with you. I truly understand how scary this shit can be, changes, no responses, new side effects, on & on, etc. We're all here for you to help you deal with whatever it is you need to deal with.
Chichi - good luck with your scans. My emotions are all over the map regardless of hormones - generally related to the roller coaster ride this beast/treatment responses put me through. An understanding, empathetic oncologist certainly makes a difference. I finally (long, long story) have such an oncologist - only been 2 weeks & what a difference after nearly 4 1/2 years of hell dealing with another.
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Ella - I can feel the stress your feeling in your omg! Talk to your oncologist, hopefully he can find another line of treatment just perfect for you. I was told DON'T GIVE UP, that is very important. Best to everyone in their treatments.Cathy
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SyrMom...such great news about a new onc. Trust & faith that someone cares about you...so important!
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Thank You, Jesus & Mary! Liver numbers came down. Waiting for chemo. Thanks for continued prayers.
:-) Penny
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WOOHOO!!! So happy, Penny, & hope you have the biggest smile on your face...I do!!!
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Yayyyyyyyy Penny , i am doing the happy dance for you , prayers prayers and prayers.
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Syrmom, very happy you finally got an oncoligist you like and trust , it will make a world of difference
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yay for good results and good oncologists
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Penny - Yipeeeeee! Our God is an awesome God and hears our prayers for each other!! So happy for your good news!!!
Ella - I, too, went from triple + to triple neg. After a couple of other tries, Navelbine is working wonderfully for me and my onc says there are other options out there, too! Hang in there and know that we are all in your corner and sending prayers for you.
Syrmom - Thanks! And so happy that you have found a good onc who will actually listen...sooo important!
Blessings and sweet dreams to all!
Debbie
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Thanks everyone for support, I'm better and will NEVER give up. I have an excellent oncologist and already started new protocol (Tykerb/Navelbine).
Debbie=What did you take before Navelbine?
Penny=Your good results are our good results, brings us hope and reassurance, so happy,
Syrmom=God communicates with us through people and our oncologist is that person. I'm happy he finally sent you the right one
~exoxo
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Penny - sooooo happy for you!!
Yes, ladies, having a good Onc makes all the difference! It's been a long, hard, 4 1/2 yr - but, I'm eternally grateful now!!
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Syrmom, i am really happy because i can feel your good vibes and i like you am very grateful you found this doctors. With God's speed
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Penny, I'm so gladto hear about your good numbers.
And now here's my good numbers - CA 15-3 was 779.2, CEA was 15.8 on March 3, the day of my first Navelbine infusion. On April 8 CA 15-3 was 452.3, CEA was 10.
Thank G-d it seems to be working.
Leah
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Syrmom - just wanted to say it took me three years to find a good oncologist and indeed it makes ALL the difference - I have also been lucky to have an oncologist primary care physician in my area (only one of 4 in the state) and am seeing her too. She helps with all the stuff the oncologists are too busy to manage - side effects, coordinating tx, tender, loving care and moral support - these two have changed my "cancer" life and I will be eternally grateful. Susie
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Ella - I was on Xeloda for a brief period of time. I'm one of the few people to whom it causes cornorary artery spasms. So, not on it long. I've been on Navelbine since November and it's doing a great job in shrinking the liver mets.
RonnieKay - I'm slow lately...just re-read your post and caught the "firm underarms"! What the heck are those! lol You're right...maybe six years agod, but no such thing now! :0)
Leash - great news on your new numbers...you go girl!!
Debbie
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Great news, Leah! Thank You, Lord!
:-) Penny
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Wonderful news Leah! So happy for you and thank God it is working and hope it keeps doing so for a long time
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Well again my cancer has progressed. First it was both lungs, then liver and now bones. Showed up in a bone scan in both hips and spine. Sigh. I hate Cancer!Cathy
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Cathy,
I am sorry for your progression and i pray God your doctors find a new line which works for you. Let us know what comes next. Bone mets are very manageable i pray yours are. My prayers are with you . Hugs.
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Sorry, Cathy. Prayers...
- Penny
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Sorry to hear of the progression, Cathy! Sending prayers and big hugs to you!!!
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Oh, Cathy, I am so sorry to her this news.
Leah
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Thank you so much ladies. -
I've been in the hospital off on for the 3 mths...it's either fever of 103.5 or abdominal pain from my colostomy...And the fear that something may happen when I"m home alone...They talked alot to me this time in the hospital about assisting living...I just got this 5th wheel and love living here...I have a caretaker a couple hrs during the week..but not on weekends...I think I'm going down hill...I can hardly eat...walking is difficult...I NEVER FELT LIKE THIS IN MY LIFE...IT FUCKING SUCKS...I WAN'T MY LIFE BACK NOW!!!!!!!!!!!!!!!! Just give me some strength God!!!
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freebird- I am so sorry that you don't feel well. I am giving you all the cyber hugs and help I can. We are here for you.
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Freebird , i am sorry you are feeling so ill, my prayers are with you , may god give you strength to fight. We are here whenever you need us , ready to help you emitonally at least anytime. Hugs.
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Freebird - First Big Caring Hugs!!! So sorry to hear your feeling so bad. It does SUCK BIG TIME. I know I'm not me anymore too. Wake feeling weak and tired. Can't do much and I'm beat. Very little appetite. Losing a lot of weight. Wish I could take your hand and we fly back in time about 25 years!! To the good years. Cancer Sucks, Cancer REALLY SUCKS! Praying for you too!Cathy
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Freebird so sorry to hear your suffering, at least your in the right place to get help and hopefully with the right meds you will start to feel better.
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I was reading along, celebrating good news with SyrMom, Leah, Penny, Chichi...then I remember why we're all here. Dang it...so sorry Cathy & Freebird. My prayers that somehow, some way, there will be the right cocktail-the one that prevents any new crappy cells from invading & that strength will be restored, along with appetites & feel good moments...increasing to days, weeks, months & years! Is it too much to ask??? I don't think so. Like Chichi says, God hears the prayers of all of us...so we keep them coming!!!
I am so happy to know others are having good results on Navelbine. I am forever grateful my onc chose it first..which she said she usually does for mets. And...now I'm grateful to onc #2...for taking me off it after 22 months! I saw him Wed, my 6 month anniv of my last Navelbine. He said he's very happy that I'm doing so well on herc/perj/letrozole & asked if I knew how good my markers are :-) (his nurse calls me every 3rd Fri, after infusion and markers that Wed). He said in 6 months, if all stays the same (which he expects...even though I'm nervous), perjeta will be dropped. He said it's obvious my C is her2+ sensitive & research for years has shown herceptin can do the job...although he'll monitor even more closely. He said he's going to be developing a study w/her2+ bc mets women, who've reached remission-ME-in regards to vaccine, etc. he used the R word. I asked if it's allowed to use that word in today's cancer terms....he said, "I just did." I then got my latest TM's-cea-.7 (which it's been since on Navelbine for a few months), ca2729- less than 5...not measurable. I'm a bit numb, very happy & thankful for this smart onc, who looked at my history & came up w/the right plan. Yep...a blessing, for sure. Thank you God, for putting me in his hands & granting me this moment. I pray it lasts...and that healing is in the plan for all.
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yayyyyyyyy RonnieKay ,
As Penny says a happy dance for you and thanks be to God for ever and ever
I cannot add more this is the happiest news i have ever heard in such a long time and i hope your moment will last for a long long time. I love you Ronniekay and still yayyyyyyy.
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Woo Hoo, Ronnie. Thank You, Lord!
:-) Penny
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RonnieKay First ty so much for your kind and caring words. I am very grateful and for all prayers and I will keep trying to find that right drug for me also as I know my oncologist will give it his best shot also. I am so glad you have found the right doctors and the right treatment for that wonderful R. May you stay there for long term along with many others here. -
Hi liver peeps/
joining this group; CT scan last week revealed one lesion that was 1.4 (had shrunk on taxol from jan 2015 scan) is now 2.1 and a new one .6/ waiting for biopsy and then to start Lxempra depending on biopsy. all my blood work including liver enzymes are good. actually liver enzymes are low. starting year 3 with mets in august and starting treatment line 3. interesting correlation. when I know more about biopsy and tx will let you all know.
I ,mostly feel sad. however, when i started the taxol; last july I was sicker then I am now with these two lesions. I lost kldney function last july and now kidneys are working at about 90 percent./ taxoi worked/ this is all about putting out fires but the house continues to be a house I can still live in.
that all I got for now. best wishes to you all ^5
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Diana50,
I am so sorry for your progression, i know how diappointing it is when you start to feel it is going well then you see it is not. It is depressing. But thank God there are alot of new treatments out there i hope your doctors will find the right one for you. Also the number of tumors in your liver are not so many to me it feels more clear and manageable more than having more than 10 and having you liver light up like a christmas tree lolllll. I am puzzled why are they doing a biopsy now didn't they biopsy your first tumor? Even though i believe it is good to have a second biopsy , cancer somtimes changes status which may help your doctors a better outlook on how to treat you. My prayers are with you and truly hope you get some peace of mind.
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Woodlb
Thanks for your post. I had biopsy when I first met to my spine in August 2012. My onc wants to see if pathology changed. Like to her2 positive for tx options. I so appreciate positive stories on liver mets. Thank you. Will know more after biopsy and tx plan.
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Welcome Dianna50 - Sorry to hear of your progression. I too am trying to deal with the same. I was just dx last month with liver mets also. Already had it in both lungs and just last week I was told it has spread to bones. In spine and both hips. My oncologist put me on Faslodex injections and said next we go to chemo. I have been told by a couple gals on the Faslodex page they have been stable on it for 3 and 4 years! I found that to be positive! There are many possible treatments and we must trust in God and our oncologists to find the right treatment for us. Best Wishes back for you and all. -
Diana, my thoughts & prayers are with you, as well. I understand how discouraging it is when a tx fails us - it's happened to me more times than not. Hang in there! You just never know which one is the magic bullet!
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Sorry Peeps!! I have been busy just enjoying my good news that I got yesterday at the Doc's ....Here it goes...My liver tumors have dissipated...My tumor markers are down from 436 to 200....and my white counts are normal...yea isn't that awesome...I get a break from chemo till after Mother's day...So I'm going to enjoy ...anyone what to take me on there back sit for a ride this weekend...let me know ahead of time...I need time to plan...I sure would like too...to celebrate my GREAT NEWS!!! ItSgOOdTObEmE....!!!!!! Love you all...
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wonderful news Freebird! Awesome, enjoy your break and mother's day and i hope the good news keeps pouring in . God bless!
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Woo hoo, freebird53! Thank You, Lord!
Penny
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Hi all,
I have been reading off and on but have not really had the energy to post or stay in contact. However, I am now beginning to feel much better.
My operation to repair my leg was 3 weeks ago. It was supposed to be under an hour but took nearly 4 times longer. I am very grateful for the my skilled surgeon and the time and effort he put into doing the repair which meant working very late into the night. I started back on chemo about a week ago and have just completed my 7th cycle of gem/carbo. It has hit my bloods hard and my Hb yesterday was 8.4 but we went ahead anyway as I am only breathless when climbing stairs or walking far. One curious thing, my tumor markers fell slightly after 5 weeks with no treatment. Not significantly, but I was really expecting to see a slight upward movement. I will have more scans at the end of June.
I will try and keep up with everyone now that I am feeling better. Big wave to diana50, who was with me on the weekly taxol board. Hope you get the results you are looking for from your biopsy.
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Good to hear from you, springwatch. Glad you're feeling better and that your TM's went down a bit. Thank You, Lord!
Keep us posted.
Penny
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Freebird - Awesome news! If I was in your area I'd be taking you out for sure! Hope the good news continues!Springwatch - Glad to hear your feeling better and TM's are down even if only slightly. Keep it up!
Cathy
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I am so glad to hear the good news from Carla and Springwatch!
Happy Dancing for both of you.
Leah
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Spring...so happy for you, that surgery is done! How are you doing...I pray there is no (or at least much, much less) pain? I hope healing has gone well & you're getting stronger. Awesome markers lowered...hoping blood boosts back up. I know when our system is compromised w/chemo & surgery, it takes a big hit. May each day be a feel good, healing day!
Carla...such good news...especially when you'd been feeling so sick! Take it easy & continue feeling strong!
Diana...zowie, yes, a biopsy is called for. We know with our own gals here...tumor makeup can change...making it a whole new ballgame for tx! Stay hopeful...prayers new meds will do the job.
TGIF...
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Hi everyone
thanks for all your comments and welcoming me into this group. I look forward to getting to kno58w you all.
Spring; I had actually been thinking about you so was great to see your post. glad marker went down and hope you will keep on feeling better and better.
my liver biopsy is Monday; CT guided at our cancer center. lesion is very easily accessible. very similar to breast biopsy at a breast center; no drugs or surgery...etc involved. last biopsy was when I first had a met in my spine and now after 33 months onc wants another sample of tissue. still scheduled for chemo next week too; last week when I saw onc she said ixempra. if her2 + then add targeted. anway,, my TM really popped from low 400s last month to 580 this week. want to get the chemo started to start killing cancer. the little suckers. so far blood work is good' nothing showing in liver blood work I guess that happens a lot.
anyway, like I said; i look forward to getting to know all of you active peeps on this topic. keep on....yep.
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Springwatch, welcome back, i am glad you operation went well even though long. But better long and well done rather than short with problems. I hope you are able soon to move more freely and pain free. Carbo+gemzar is very tough on the blood if your Hb was as low as 8.5 , they should have held your chemo and gave a transfusion. This is what they gave me when i was on this combo. I was also very tired and out of breath, so my MO refused to give me the dose before getting my blood Back in shape. It is not so strange for your TM to go down or up when there is a change in pattern during treatment. TMs tend to play up and down before settling either up or down. But i do hope it is a good sign that the treatment is working on containing the disease. Do not think much about it , rest as much as you need and if you are very tired then inform your doctor and let him fix your blood. Prayers for you all the way. Hugs.
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Hi all! So much news in the last week!
RonnieKay - Just one word WOOHOO!!!!!!!!!!!! So happy for you!
Springwatch - glad you are back posting and that you are feeling better. Hugs n prayers that you will feel better each day
Diana50 - Welcome to the board...you will find a wonderful group of women who lift each other up daily. Hugs to you and prayers for your biopsy results
Cathy - Sorry to hear of your progression...and I cannot agree more...Cancer SUCKS!! Many prayers for you and for your doctors that they may find the right combination to stop the progression and knock it back down!
Freebird - Great news!! I'm so happy for you!!! I'd love to pick you up and go on a little road trip...as long as we don't have to pull a Thelma and Louise! lol
Penny - How are you doing? Been thinking of you and sending prayers. Have you had your family vacation or getting ready to go? Hope its's fun and restful and full of laughter and new memories!
Woodylb - How are you, my friend? Are you looking forward to going home next week? You are always here to encourage all of us and it means more than you may know. I hope we can be here to do the same for you.
My first infusion of Navelbine in two months went well...no spasms..woohoo! Just the usual tired with no appetite. Taking my Ativan when I start to feel "odd" and talking myself off the ledge! lol Go for 2nd on Monday and then off for two weeks. Have scans scheduled for May 15 to see if the two months off affected the tumors. Saying prayers that they remained the same...of course it would be great if they shrunk some more, but don't want to ask for too much! lol
Prayers and hugs to all! Debbie
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Hi, Debbie! Thanks for asking. Gemzar has been tough on me but thanks be to God, I'm still here and doing fine. Will post more on vacation later.
Penny
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Chichi,
I am so happy you started back on Nevalbine and even happier your heart is holding ! Wohoooo! I am waiting with great expectations for your scan i hope it shrunk a little more or a lot more lolll all is good as long as it is not progressing. So my prayers are with you for a good and optmistic scan.
I will have mine on the 11th , keeping my fingers crossed . I will be heading to lebanon on thursday and monday will be my scan but also my son will start his finals. He will be stressed and i will be getting all the heat hehehehehehe . But summer is almost here and i hope it will bring good news and great expectation for all of us.
My prayers are for all of us and may God work his wonders in all of us. Keep posting do not leave us for too long without news about you . Lots of love , hugs and prayers .
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hi ladies,
I am new to this site. I have liver mets that are not responding well to therapy, but I have had them for about a year and a half and they are still small, but increasing in number...I have just started taxol- fingers crossed this one helps. My onc is waiting for Ibrance to become available in Canada- hopefully in the next 6 months. I guess if Taxol is working, he won't change me that quickly though. Hate going throughout the hair loss, I am working full time (and still feel and look "normal"). I am about 2 1/2 yrs into mets dx.
I have had one "hiccup", my onc wanted to try SBRT for the 2 lesions that were progressing (Jan2015) and the Rad Onc said no! He said my mets were all linked together and it wouldn't work, may even make it worse?!?? Still don't understand that one, but it moved me to taxol.
I look forward to hearing how we are all doing!
Hugs,
Maureen
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hi people. Hi modum
I am new too. Having biopsy today and results go to my hospital and to Foundation One.
I was on taxol for 10 months b/c mets tanked my kidney function. Widespread in belly. Taxols worked for 10 months but developed two lesions in liver. 2.1cm and .6. Onc took me off taxol and planning on Lxempra for liver. The taxol saved me and turned things around with kidneys and I know taxol had helped lots of people with liver mets. So hope you get good response.
To everyone else. Only best wishes and responses to treatment. Will follow up after biopsy results.
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Modum,
I am sorry you joined the club of liver metsters, but you are welcome here anytime. You did not mention if you are IDC or ILC. Even though they are both metastatic they differ slightly in treatments, and respond differently to the same treatment. I have been on taxol for almost six months. But i am not on taxol alone i am also on herceptin/ perjeta and weekly taxol. After three months my PET showed no tumors in the liver, spine , and hip and iliac bone.
Many people on this thread where also on taxol and got good results. I think the choice of your doctor is a good one and i hope you respond to it as good as everyone else. I have to mention that my response was not only due to taxol alone , it was the combination of all three meds. The SEs also are different from one person to another, mine are mostly digestive ( colon) and neuropathy, i also lost my hair for the third time but not all of it . I do not wear wigs or cover, my hair thinned but is acceptable and i cut it short to make it look cute lolll.
As for SBRT , ablation or anykind of invasive treatment, my doctor is like yours against , and not only my doctor. i consulted with two others they gave the same answer. To my knowledge and research very few metastatic BC patients are eligible to such procedures. Had the tumor had originated in the liver and one tumor only and not metastased then yes such procedures are successful. But once a cancer becomes metastatic and visceral ( meaning everything related to blood organs) such as bones , liver and lungs do not fit such criteria. Once the liver is hit by mets, it means that the cancer cells are circulating through the body because of the function of the liver which is to cleanse the blood. This means if you remove the tumor it will disappear but it will not stop the other circulating cells from forming another one or to set colony in other parts of the body. This is why most oncs prefer to treat the cancer systematically rather than locally.
Of course this is my opinion and that of the doctors i have seen and i happen to agree with them. You should do what you feel is right for you and take into conideration the opinion of a doctor you trust and an expert in the field.
I hope this helped you and wish you excellent results on taxol. Prayers and God bless you.
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Diane50,
I am happy your biopsy went smoothly and hope the results give your doctors more insights into your treatment and find you a healing combination. Keep us posted and may God bless you.
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Hi Woodylb, Hi Diane50,
Thanks much for your response and information. I was IDC 12 yrs ago and 6yrs ago on my 1st and 2nd BrCa...mets started in the lungs. I am going for a liver biopsy on June 5 to see if the receptors are still the same (possibly why my other mets are doing great, but not my liver...)
I appreciate your perspective on the SBRT as well, I was hopeful at the time that a little zap might make my liver behave!
Taxol seems to be good for liver mets, so I am content for now.
I wish you continued good health! Good results!
Maureen
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Thank you Modum for your wishes i will know soon enough my results , monday is my PET scan and i will post them. Meanwhile, i hope your liver if it has changed status and turned to HER2+ you would have also other options. Mine did in a turn of events and for me it was miraculous as i was running out of options
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LIver enzymes up again. Thank You, Lord, for carrying me.
I think it's time for a new team. I know what's wrong with me. I'm having stomach cramps that spread around to my lower back (kind of like labor). It's the diverticulitis. Called doctor. They want me to go to hospital instead of just calling in a scrip for it. The diagnostic tool for this is a very expensive CT scan. I'm beginning to feel they're sick of me and want me gone. Thank The Lord there are tons of highly-qualified oncologists in this country.
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My dear Penny, i hope you are alright, please keep us posted . Prayers and lots prayers heading your way. Xoxoxoxoxoxoxoxo
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penny
The hospital can take a look and see what is going on. Prayers. Keep us posted. Only ️️hugs coming your way.
Meet with on Monday to go over pathology of liver biopsy. Got my first Lxempra infusion yesterday. Hoping kicking those liver mets to the Curb.
Woodlby thanks for insight on treating liver mets. My onc said "chemo". I still check into abaltion and Y-60. Options give me hope.
Only prayers and best wishes to all.
Diana50
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Welcome Modum to the liver metsters!Good luck with your new treatment Diana50!
Cathy
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Sitting at the mall...the first place I've had total quiet (odd place to find quiet!), to read through what's going on with my liver sisters. To our new gals, you have our love & support, hope & prayers. It's so frightening to hear-it's in your liver! I thought, why not my bones!!! Then I thought, why not my lungs!!! (Never thought of brain!).... but, in reality, there is good/bad about anywhere these buggers show up. Did I really say good??? Hopefully, those we love & the drs we put our trust in, wish for us to live long & joyful lives...and through the difficult & less difficult times, thank God for His love...and for this group of sisters who understand & help us to get through & face the music.
Woody dear....you are a blessing to your darling DS...safe travels & tell him we're all praying for successful finals!!! May 11th, I will hold you in my heart!
Chichi...go Navelbine go! Hope scans show it was working all along...and may the no spasms part last a long while!!
Penny...follow your heart in what is best for your treatment. You've been blessed with a sound, bright mind...if you feel you need another opinion, seek that out. I truly feel God led me to this new onc...I had utmost faith in my former onc, but as I saw/felt her become discouraged with my fear...mostly wondering how I could continue on my regimen w/qoa..it was determined she wasn't well & had to leave work for extended sick leave. I know you've been through so much w/your team...maybe fresh eyes will see something more clearly???? My love & hope for healing.
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so good to hear from you all. I will know more when I meet with oncologist Monday. I am especially interested in biopsy results.
Liver mets are scary. You all have helped me calm down a bit. Thank you. Will post more when I know more. Had my first chemo yesterday (lxempra) since taxol stopped working. I get that we move from one treatment to another.
️Hugs
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Hey Penny - I've been thinking about you the past few days and wondering how you are doing. Were you able to look into a possible new Onc team? Keep us posted, and wishing you a relaxing weekend.
Laura.
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Penny, I have been thinking of you and hoping that you find an oncologist who you have faith in and inspires you with hope. Sorry about the diverticulitis. Does it really have to be a CT scan to get a DX? My mother's was diagnosed with a barium enema and X-ray.
Welcome to modum and hoping that all who visit here have a relaxing weekend planned, or maybe something fun?
I am doing better each day but I had a bit of a bad time a few days back with breathlessness and exhaustion. I know my Hb was low last time it was done but pretty sure it fell further after the last chemo. I have promised myself that I will go for the blood transfusion, which was suggested, if it ever is that low again.
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Good morning lovely liver ladies! Hope it is a good one for you all. Welcome to Diane50 and best wishes for good results on your biopsy.
Welcome also to Modum - I'm interested to see if your biopsy reveals a change in the ER,PR,HER status. My original diagnosis was ER+, PR-, HER-. Liver mets are triple negative, so hormone therapy did nothing for that. I'm on Navelbine now and doing really well with it. Taxol usually works well for liver mets also, but I understand the hair loss issue. I also work full time and wore a wig for a year - living in South Texas...not very comfortable! lol
Penny - It sounds like God may be leading you to find a fresh set of eyes to look at you. I know you hear His heart and will follow. Sending prayers your way for relief from the diverticulitis.
Woodylb - Here's to your PET on Monday continuing to show no tumors! It looks like they have the right "cocktail" mixed for you!!! Wishing you all the best, my friend.
RonnieKay - Thanks for the good wishes on my upcoming CT scans. I took my second infusion on Monday and this one kicked me back a bit, but I have the next two weeks off, so I can build back up. Had abit of a scare with pneumonia again, but my pulmonary doc jumped right on it (I love him) and has me on strong antibiotics and steroids as well as nebulizer treatments 4 times a day. He thinks we can kick this in the butt from home and not go back to the hospital. Feeling better already after just a couple of doses of meds, so WooHoo!!
Best wishes to all for a great weekend!
Debbie
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Well, everyone, thanks for asking about me. Love you all. Got back from Disney family vacation about 12:30am. While there, I started with abdominal cramping @ Wednesday. It got progressively worse until we got back. At which point, my husband took me to the ER, the pain was so bad. Poop - I am literally full of it. Never knew such a silly word could cause so much pain. I have been slightly constipated but not bad so I was surprised. I thought for sure it was my diverticulitis. I'm usually on top of my game with prune juice, senna, etc. The doctor gave me some weird stuff to drink - 1/2 bottle every 4 hours, plus some milk of magnesia.
Oh, yeah, bloodwork came back - liver enzymes even higher, including the bilirubin, which had always been stable in the past, even as the enzymes went up. I have to follow up with that with my oncologist on Monday.
big SIGH....
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Penny thinking about you. Poop is a nightmare sometimes. Hope you will be feeling better over the weekend. Keep us posted on your onc appt.
Thank you all for warm welcome. My first chemo of Lxempra was ok. Mostly nausea and constipation (poop 💩) but lots of prune juice and magnesium helped there. See onc Monday for results of biopsy. Then one more chemo and I fly to minneapolis for nephs hs graduation.
This is hard stuff. I find strength in reading your experiences and how you all deal with this stuff with so much faith. Keep on.
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Penny
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Same to you Penny and to all of you lovely ladies !
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Hope everyone had a wonderful Mother's Day!
Scans this week.
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Syrmom, Happy Mother's day ! I hope it will be crowned with excellent scan results . Prayers and good luck.
Mine is tomorrow , Chichi follows . Hope for the best lovely ladies . Lots of love and prayers!!
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Prayers & good luck to Woody & Chichi with their scans!
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Woody, Chichi, SyrMom, praying for clean scans!!!! Chichi...glad your dr is proactive in getting you the meds you need before the hospital is needed!
Spring...think of you when I take long walks...I envision myself springing above ground, like you! I'm sorry you've had rough times, but you're reading your body & you will do what you need to do to feel better!
Penny...I can't believe it was a poopy problem!!! And being miserable in Disneyland just makes me sad. I hope tomorrow's appt has a plan for a new or different treatment. I know there is always, always hope...God has you in His hands...that is why hope is alive.
Love to all...Happy Mother's Day...every day!!!!
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Hello All - Prayers to all who are getting scans this week - I swear I'm getting scanxiety for you. I really hope everyone has great, or at least 'doable' results! Penny, so glad your digestive problem was solved. I had the same thing over the winter and when I finally listened to my Onc and took something every morning/evening faithfully, I'm a new person. I even lost a few pounds, lol! Wishing everyone a good week, I get Halavan tomorrow after a reduced dose for a few weeks - my liver is telling me that it is time to get back on the normal dose
Laura
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At UPenn. Waiting for ultrasound. May have to be admitted. Not sure where blockage is. Will keep you posted.
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hi . I live in uk and was diagnosed with liver mets just over a week ago. I had low volume bone mets for a year that responded to hormone therapy then my liver tests in blood went haywire and got ultrasound which showed mets. Waiting on ct to see how extensive they are. Been feeling sick as well. On anti nausea meds. Been in hiding about a week. Can't stop crying and thinking about my death. I am 40 and mum to a 5 year old. I just can't believe this is happening. I am lobular x
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Sorry for this news, Torridon, but glad you found us! I already posted on your thread, but we know your fear, to have a vital organ involved is terrifying. Hopefully you'll have a biopsy soon (make sure that happens!) & smart oncs will determine the best tx for you. When I logged on after my liver mets dx, the first post I saw was Denny...celebrating 10 yrs w/liver mets. We all know everyone's dx & body is different...but hope goes a long way to being able to truly live with this disease...I'm sure you've had the hope thing going w/bone mets...and a precious 5 year old...who needs Mum! As you get more info & understand your course of tx, I hope the tears lessen & hope takes over!
Thinking of our scan gals today...in my prayers!!!!
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Laura..hoping Halaven is kind tomorrow! What do you mean that your liver is telling you to get back to the normal dose? Are you having pain? Hope not!
Oh Penny...thinking, praying, hoping they find the blockage....not what they thought???? Ugh.
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Hello ladies,
Penny, i hope the find out soon what is going on with you and treat you for it. My thoughts and orayers are with you.
Diana50 i hope your doctor gives you many options , there are always options and i hope you get the right one.
Chichi my friend i am waiting for your results with impatience and great hope you will get excellent results.
Syrmom, i cannot wait for your scan either , prayers prayers prayers.
Spring , i am glad you are getting better and pray you continue to do so .
I just wanted to give all of you some ray of sunshine and share with you my news, i got the unofficial results from my doc today over the phone. My PET is clear of any cancer activity and tumors , still on complete response till now . I do have a very low activity insignificant to be considred cancer, my onc thinks it could be from my COPD i am a heavy smoker and i am still taking inhalers since one months following a bronchites , so it may have been picked up by the scan as a hot spot. She will read it with me tomorrow while i am getting my taxol. I still have one taxol next week , it will be my last god's willing. But will continue herceptin/perjeta + an AI to be decided later.
I want to thank all of you for your kind wishes, it kept me going and your infnite support at all times and i pray and wish for each and everyone of you good scans , healthy results, and healing treatments. Where there is hope there is always a way .
You are all wonderful , loving and caring and deserve all that is good and beautiful . Lots of love and prayers to all of you for good responses, no progressions , stability and serenity. Love you all . ((HUGS)).
If i forgot anyone please forgive me the last few days i missed some posts. May the alord bless us all .
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Torridon,
I am sorry you have joined our club, like Ronniekay i am glad you came here where you will feel welcomed and loved.
I understand your fear specially when vital organs are involved, specially when you have one little girl who meeds her mom . But remember you are so young , and treatment options are available and are efficient in prolonging lives and sometimes remissions. Like RonnieKay said, many ladies in stage IV have doing ok and well for years. i am sure that once you overcome the shock , your love for your little girl will help find a way of coping, fighting and surviving.
Once the biopsy is done you doctors will be able to choose the right med for you. Have hope , i am also lobular and it has been a year since my liver and bone mets. I am still here and so are others.
Inoray you soon get a clearer picture which will ease your mind, heal your body and lift you up.
Keep us posted
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Penny, I hope they find out where the blockage is very quickly and they can offer you a simple solution. Thinking of you.
Syrmom and chichi, good luck with your scans this week. My scans used to be around the same time as yours but I am now 5 weeks delayed due to the time off for my surgery.
Benjnate, Glad you checked in. I've been wondering how you were doing. I have the same question as Ronniekay. What do you mean about needing to get back on the full dose of Halaven. Are you in pain? Or, are you blood tests showing elevated liver enzymes?
Woody, Congratulations your clear PET scan. Time for a celebration. Good news, too, that you will be finishing taxol soon and continuing with the hormonals and herceptin/perjeta. A lot of treatment still but gentler than the chemo, I hope.
Torridon, Finding out that you have visceral mets can be devastating. But there is always hope. Some of the ladies here have been living with liver mets for years and I hope that you will be amongst them. Get your mets biopsied if your oncologist hasn't done this yet. Mets can change their profile, especially liver mets. Good luck with your CT results.
Ronniekay, I am hoping to go for a long walk one day soon. I am still building up the strength in my leg. I had physio today and they have cleared me to go onto one crutch rather than two. I have been sneekily doing that around the house, against doctor's orders. Having taken 3.5 hours to replace my femoral rod, my surgeon has wanted me to be ultra cautious and not go to full weight bearing too quickly.
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Spring,
U should listen to your doctor and rest your leg for a while before bearing the full weight , he is right. Still i am happy you are able to move and i hope soon you can scan also and get good results so we can celebrate together.
You are right herceptin / perjeta and anti hormonal are still a lot of meds , but i am lucky i have this option. If it keeps the cancer at bay then i am very grateful and humbled that i am alive . I tha o god each and every minute specially for this wonderful community here. I hope you post good news soon. Wishing you a speedy recovery.
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Sending best wishes for peeps having scans and for Penny to get answers and feel better. Like I said I feel a little lost not knowing you all. Your posts are helpful.
Met with onc re: biopsy. She ordered Fish test for Her2 status. Apparently they don't always do Fish on initial biopsy sample. I hope Fish shows + in Her2. Still ER + which didn't help me much on dx of mets in 2012.
My onc is also sending biopsy to Foundation One for genotyping and options for targeted therapy. Don't really know if it makes any difference so we will see.
She said no chemo may 26 as I fly out to nephews graduation June 1. Too risky and I want to feel good for nephs special time. So I am happy to have a little time to recover and feel good for a change. 👍. will be back at it June 8.
Everyone take care
Diana50
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Welcome to the newbies! Hope you all had a great Mothers Day! I sure did. I think my kids requested pic's with me as they now don't know how many more Mothers Days we have. Living with mets to both lungs, liver, bones - both hips and spine changes things. Every day has to be treasured truly. Another scan in early June will tell if Faslodex is working or not. If not then it is back to more chemo. The way I look at it.. if I lose my hair again.. better my hair than my life! Hugs to all.Cathy
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Diana,
You know me from when you joined the taxol board! You are not alone here. I may be way off here but I think that your onc sending your sample for the FISH test suggests that your result may have been equivocal when tested using IHC which is the standard test. I'll keep my fingers crossed. Enjoy your nephew's graduation later this month and especially enjoy your little chemo break.
Trying, Don't dwell on whether it was your last Mother's Day, or not. No one knows where we will be this time next year. My onc said he has long since given up trying to predict how well his patient's with Stage IV disease will do. He has had patients that he thought would go on for many years but who quickly succumbed to their disease and others who he felt had little chance of making it through the next 12 months but who he is still treating years later. We are all individuals and so are our cancers. In the meantime, I will keep my fingers crossed that the faslodex is working and your next scans show improvement.
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Hi all. I will be offline the next few days as I'm in the hospital trying to figure out if I have a blockage or what You're all in my prayers.
:-) Penny
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Penny
Sending you prayers from Palm Desert. Know while you are off line your peeps are here.
Spring. Thank you. Yes I remember you and others from taxols board. Thank you for your connection. My onc is of few words but she seemed pleased when she saw biopsy Her2 graph. Fingers crossed and prayers. Interesting at one time Her2 + was NOT good; now in 2015 it's status offers options.
I have so much admiration for all of you. Thank you for the info, the courage and truth you all speak. Spring; healing to you and good scans and results for all. ❤️❤️
Diana
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Well...Just like everyone else...I read every post ...but then when it's time to respond...My chemo brain doesn't allow me to remember all your names...but just remember I respect and love all of you and your comments are inspirational...
I have been off treatment for 3 weeks since my last great news I posted a ways back...Liesions have dispated on my liver...tm down from 436 to 200 and blood cts pretty normal...
So I go Thursday to start Havalon again..along with Felex....and my bone booster...I have to say I have enjoyed being NORMAL>>>> ha what ever that is...but in this disease...that's what I call it...I have been able to finish my landscaping and be around my grandboys alot more...
Mother's day was beautiful..spending it with my extended family and my daughter...
I have a bigger surprise happening today..that my daughter doesn't know yet my I am flying in her Dad for 2 weeks ...This is a long story...but something that we both need...We have been very good friends since we split 1998...And have become closer this last couple years just via phone...anyhow...she has NO idea he's coming today...so we are surprising her at work...around 1pm Idaho time...I love doing surprises..especially for my kids...
So Update later...Love you all Carla
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Thank you for your kindness Springwatch! RedWolf - Praying for you also. Keep up the fight!!Cathy
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Hi everyone. I don't post very often but read every day how you are all doing. Last time I posted I was about to start a clinical trial. It is oral and it has only a number at the moment(azd4547). I have entered the trial at stage II. The dosage has been determined but not all side effect s known. The drug works on Fibroblast growth factors which are present in the blood and may stop treatment from working. I have just completed first cycle and Ct scan shows liver tumours have shrunk by 30% and lung tumours are less. I am ER plus and the last two chemo have not worked for me. I have had no side effects other than h air thinning. I feel really well and have actually gained weight. I had lost over 28lbs.
Torrid on I am also from the UK and have had lung bone and liver mets for 3years.
Good luck to all waiting for results and I wish you all good days.
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Mutherflush,
I am glad your trial med is easy on you , the important thing is that you have shrinkage , i hope it continues to shrink. What kind of a treatment is it? Chemo or biological? And how long will you be able to stay on it if it works? Does it have a limited time? I believe gaining a bit of weight during treatment is so much better than loosing it , it keeps you strong . I remember my onc telling me this at my first dx back in 2010. I hated the fact that then i gained about 20 Kg lolll i was really huge . Now i gained 7kg . I have one session of taxol left this coming week , maybe i can diet a bit . But i still have to stay on hercept/perjeta. And anti hormone meds. I wish you stability in the least or NED if we are lucky.
Keep us posted and be well. I am really happy for you.
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Mutherflush...I'm happy to see your post...and it's such good news that tumors are shrinking on your trial!! Hopeful ses stay away & you keep feeling good. Prayers you are among the first of many, many who are healed on it!
Oh Spring...I feel so stupid!!!! I temember you had your surgery & the pain you were in before..and I totally spaced...Springlake is the runner...you are our Watcher of all things Spring!!! I'm sorry..sending you love & thrilled you're healing well (and hearing Woody's voice when you're standing w/one crutch..lol).
Diana...so glad you're getting more testing done. I remember my surgeon's call after my lump w/my first dx-already knew IDC, but she said-good news: no lymphs involved, bad news:her2. Fast forward a few years (& 2 more dx) good news:her2. Thank you, herceptin/perjeta. I know it still has its curses, but if these drugs can work as long as possible, I'm so thankful and hopeful for any sister facing the same.
Freebird...I hope your reunion goes well....that's a long time to be separated, but maybe that absence & fonder saying will work :-).
Tryn...it seems sometimes every thought I had, every step I took, I measured in the number of times I had left to repeat them. I think it's the nature of the beast. But Spring is right...my onc, who early in my first treatment, said she'd never tell a person how long they had left, told me w/my mets dx that I would be in chemo for life..and that would probably be 5 months. That was 29 months ago...the last 6 on only h/p/let. That said...I'm like everyone else...hoping, praying this works forever!!! So...enjoy those pix...and plan for many more to come!!!
Woody...still singing praises for the great news you've gotten!!!
Penny...asking the Great Healer to keep watch over you!!
Laura...how are you feeling after Halavan???? Thinking of you!
Leah....wondering how tx is going???
SyrMom...thinking about you!
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Hi Woody. The treatment is biological and I will be able to continue with it until it stops working. First phase gave breast cancer patients more than 24 weeks before any progression. Hoping for at least the same. I too believe in the power of prayer and my faith ls what keeps me positive. We all have dark times and I have had four months of sheer hell(could not walk or eat and really weak. Needed a wheel chair) but I'm back and ready to fight again.
Thank you Ronnie for your support. I know from the posts that you have been a source of comfort for a lot of people on this site.
I will keep you posted with my progress.
God bless you all and I wish you good pain free days.
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Penny, I will be thinking of you and hoping you will be back here soon to update us on how you got on at the hospital.
RonnieKay, You are not stupid!! No need, whatsoever, to apologise! I am improving a little bit everyday. Less pain, less swelling, more mobility and most importantly more freedom to be independent. It has been so frustrating these past 10 weeks having to use two crutches. You are completely reliant on others to get you all your meals, do your laundry, etc. I could not even make myself a cup of coffee and carry it to my comfy chair, if that's what I wanted. Now I can (woody - they said it was OK) get about on only one, I feel free.
Freebird, I hope your surprise reunion yesterday went really well. It is along time to be apart but time does heal old wounds.
Motherflush, Great news that your trial meds are working. I really do feel that having our medications tailored to our type of cancer is the way forward for now but my guess is that immunotherapy will ultimately be the cure. Good for you going on the trial as it will ultimately help everyone.
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Yes ty for your support RonnieKay! My onco would only say it depends how I respond to treatment.Cathy
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Sure wish I did not have to look for this forum, but here I am. On April 18,2015 I had alot of pain and bloating, by Sunday morning April 19 I had horrible pain in right side. DH took me to ER, They ran, CT, ultrasound, etc. flew me off to Odessa Tx. I went home on Monday April 20th. Saw my ONC on April 25th. Breast cancer mets to the liver. Pet scan on April 28, saw ONC on April 29, mets confirmed. On May 7th I started on 2000 mg of Xeloda a day. So far so good, having leg cramps at night and very fatigued. Get my CBC tomorrow at our local hospital. We live in Fort Davis, TX and have to travel 200 miles one way to cancer center. I am 14 days on and 7 days off. CBC every week. I think I will lay down for awhile.
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Mommarch, sorry you have found your way here. I hope the xeloda works well for you. There are several ladies here who have been dealing with liver mets for years, so don't despair.
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Agreed, Mommarch...we're here for you! I couldn't do this journey without our sisters!!! What a whirlwind you've been through...I think we can all relate to those first days, & weeks of this dx. This disease is so fickle, I had no clue my liver was filling up with tumors. Thankfully, things moved fast to get you to tx. Glad for your being able to take a pill firm, living far from your center. May xeloda be the answer to kicking mets to the curb!
Yes....we all need to be here when they finally say immunotherapy for all!!! XOXO
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Mommarch,
Sorry you are here , it is never a good news to find out the cancer has reoccurred and specially in the liver. Yet here we all are. I am not saying it is all fun and easy but it is doable . I hope xeloda works for you, it worked well for a lot of other women, plus it is convenient if you live this far from the center. I have noticed something though in your post. There is no mention of biopsy to the liver. Have you not had a biopsy? If not , the you shoul ask for one. It is better to biopsy simply to find out if your cancer has changef charcter over time , it will give your doctors a better insight on how to treat you better.
We are all here for you to support you as we have been supporting each other for a long while.
My prayers are with you as I hope your med gives relief and keep the cancer at bay for a long time.
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RonnieKay,
God bless you for making all these ladies here feel warmth and care . You are right we have not heard from Leah for a while . I was wondering about her yesterday. I hope she answers so we know if nevalbine is working for her.
Lollll i worried about spring because she was so much in pain, and i know she would want to move , but now i am glad her doc told her it is ok on one crutch.
Miss you , i hope all the family is well kisses to your sweetheart Margaux and to you xoxoxoxo
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Hi everyone
I'm in my doctors office, getting my third chemo. Met a woman who just came for 6 months check up with a new born (!) baby. We got to talking and she told me that she came to my doctor from Sloan Cetering where they basically told her Sorry but Sorry, go get your affairs in order.... She is stage 4, TN with bone mets now in remission and a month ago she gave birth to a beautiful boy! Is not it amazing?!!! Could not wait to share it with you. Wish you all the same happy story (well ...not necessarily with the baby ;-) )
Xoxo
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Ella,
Thank you for telling the story of this lady! It is wonderful , this goes to say that no one can actually predict when it is time for us to leave unless the order comes from above. I am happy the lady got to know the child inside her and gave him life. Amazing and a hopeful story.
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Oh Ella...what a heartwarming day you had!!!! Thanks for sharing :-). Thank heavens that young Mama found your dr...one who obviously gave her hope & healing! And thats's the wish for you too...that you feel good & this chemo does the job!!! Did I miss what you're on now?
Woody.. Interesting that biopsies aren't the standard when mets are found. I spoke this am w/a childhood friend that was dx w/bone mets in '12. Last year it went to her liver & it's now progressed to lungs. She's been on arimidex (after xeloda & a few others she couldn't remember). I asked if she'd had a biopsy when they found liver mets..she said no. She'll start taxol next week but I said to discuss it w/her onc....who told her she could have 6 mos-1 yr. Of course, I wish she knew first hand of the stories of sisters here...but I told her of you & others. So...again, thank God for this place...she thanked me over and over again.
I'm getting her/perj and the nurse just said my kidney level is high...normal for me is .7 & it's 1.19. Getting fluids & giving a urine sample-either dehydration or bladder infection...gott go pee in a cup
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Thanks RonnieKey,
I was so emotional, holding my tears back. You should see her, her eyes, so happy
I am on Tykerb/navelbine 8x2 weeks, he wants me to take Tykerb 10 pills the day before, the day off and the day after chemo-30 pills. I trust him, but looking for some kind of incide experience. I posted a while ago, but did not get any response, I guess not a lot of woman getting this combination. Thank you very much for asking, feels good to know someone cares
Cheers
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RonnieKay, are the most effected when we get those treatments chemos or others. This is why every 2or three weeks i get my Creatinine level checked . But do not worry about it . Perjeta causes water retention , and others cause dihydration , they will fix it as long as your kidneys are functionning normally no worries. They may perform more blood tests though. I hope your mind will be put at ease soon my friend . Keep me informed. Xoxoxoxoxo.
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Ella ,
All the people who went on tykerb on this site, did not continue with it, most of them got highly allergic on it. So i hope you will be able to continue and it does a good job for you. If anything Sloan memorial is the place to be. They are good , do i know you are in good hand. Prayers for you and the lovely lady with the precious bundle she was carriying.
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Hi All,
I am new to this site and I am so happy to have found it! I had my 1st Cancer in 2008 ( Stage 1) but was diagnosed with Stage 4 in 2013.Mets in bones, peritoneum lining and liver.I am 45Y. I have been taking Capecitabine since Oct 2013. It reduced my biggest met in liver by 40% ( Now 1.4cm). I feel very good and can still run and swim.( I really believe any form of sport helps tremendously) I have some feet and hands symptoms but this is not bad.I have just started a discussion on another forum, about selective radiotherapy of the liver (SIRT)and Chemostat ( high quantity of Chemo directly in the liver) . Has anyone experience any of these treatments? Many thanks
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Welcome Torridon (sp?) and AliceBE to this site as you will really find it comforting through the weeks/months/years you go through your cancer journey.
I can't get Penny out of my mind, I'm really feeling her emotional pain for some reason. Please everyone let's send good thoughts to Penny while she is in the hospital waiting to see if her bilirubin goes down.
My wbc were again too low this week, but my Onc said since they were right on the border lets go for a lower dose of Halavan so we did. We decided that we will continue on this low dose until I move on June 11, and will be 6 blocks away from a beautiful satellite hospital and can get tx their and see him once a month which is about 20 minutes/half hour depending on traffic. Then we will really take it up to full dose this summer as I will do neupogen (?) shots if I have to, to keep the wbc in line. I just can't believe that in a matter of weeks I won't have to do the 4-5 hour round trip that I have been doing for six years....I'm really surprised at how stressful that trip was and I didn't realize it.
Happy Thursday everyone!
Laura
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Benjnate,
I am glad you got a closer center where you can get your chemo wothout having to drive hours. It will take the edge of a long ride. I had the same problem with taxol, from the first dose. So i continued the whole on weekly lower dose and i did well. At first since my WBC were low i had neupogen but later i quit neupogen all together and i am doing fine. I still have one dose and i will finish with taxol yayyy. I will co tinue though on hercept/ perjeta every 21 days.
I hope halaven keeps working for you with ease and few side effects.
I have been praying for Penny , she is not sleeping too much , and worried her billirubin is down but not enough yet. If it keeps lowering till monday she will get her tx. I really hooe she does. Prayers and orayers for our dear Penny.
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AliceBE,
Welcome to the thread and not to liver mets
. You will find this thread very useful, helpful and friendly. The ladies here our wonderful and caring. Xeloda seem to be holding you stable and i hope it continues. Stable is good in stage IV . The only one who can advise you about SIRT and ablation to the liver is Penny and she is presently at the hospital. But to my knowledge not many people woth liver mets are canditate to invasive procedures. Even though one tumor disappear another one comes out instead. So i will advise you to see more than one opinion before you cnsider such procedures. I hope you get inspired and a good onc who will advise you correctly.
Welcome again and hope to see more posts from you with the same lively spirit as this one.
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Woody - good to hear that you were able to get off neupogen. You're doing so great now, you're my inspiration. I did Taxol for 6 months and am glad you are on the homestretch!
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Ellamilania- I am on tykerb and xeloda. but I only take 4 pills of tykerb a day , every day. They are 250 mg tablets. I take them at bedtime. I have been on tykerb since december of 2012 and have done well. NO new brain mets and no new liver mets. So this combination is serving me well. I hope it works for you. Just thought I would post since I am having good results.
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Hi everyone,
I've been reading this thread a lot lately, as my bone mets of four years have moved into my liver. Lesions are still small, four of them so far, in the millimeters, but I've been having some pain in that area, so they may be going like gangbusters, for all I know. My doc took me off Faslodex and put me on the new targeted therapy, Ibrance, with Letrozole. I just finished my first cycle and am waiting to get blood work done to see if I can continue on schedule.
I have a couple of questions. Do you all tend to have pain with these mets? I can't understand why I have these little sharp stabs if my mets are so small. Also, has anyone else not had chemo when their cancer moved to the liver? While I'm glad that I have another chance for hormonal and targeted therapy, I'm a little concerned, also, that we may not be aggressive enough in slowing this down.
I'm glad this thread exists. Best wishes to all.
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These postings are so helpful everyone. Learning about how others with liver mets are doing gives me hope. I too hope Penny can get her treatment. Been praying like crazy for her. I am still trying to get to know all of you.
Sandilee. I am a newby and also had some liver pain. Before scan which showed 2.1 cm lesion I thought something might be going in there. I also had biopsy on liver met and then got chemo a few days after biopsy and I think the chemo irritated the biopsy area. Be sure you ask onc about biopsy on liver spots as often the pathology changes when it gets into liver. My onc is doing Fish test as biopsy was leaning toward Her2+ which opens up more treatment options. Talk to your onc about your concerns about treatment
I am only wishing best outcomes for all.
Diana
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Leftfoot,
Good to hear from you it has been a while. I am glad you posted about tykerb since the only few people i know had allergy on it, it will put ella's mind at ease. I am also of course happy you are doing well , i hope you will keep doing for a long time. Hugs
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Thank you Benjnate, I am doing well thank God and wish it to you and everyone on this thread. I think getting a lower dose is helpful while increasing the number . For me it was either 80 per m2 every 21 days or 60 weekly. I went for the latter and cut down on neupogen after a while. After next week i will be on tamoxifen and herceptin/ perjeta as i took before aromasin , i didn't work and femara for three years, arimidex is the same as femara so my on. And I decided to try tamoxifen rather than faslodex. I hooe halaven is doing a god job for you . When will you scan ? Hugs and prayers.
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Sandilee,
I am sorry your bones ets spread to the liver, but unforunately it is either the liver spreads to the bones or the other way around. Some have pains on liver mets snd some don't. I didn't . But your pain could be caused by the bones rather than liver mets. I had chemo , then anti hormones then back to chemo and targetted therapy and now i will stop chemo and maintain with anti hormonal and HER2+ tagetted therspy. I hope your doctors find the right xpcombination for you. We are all here to help each other go through this. Keep us posted.
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Hey ladies,
Penny is out of the hospital and is doing ok , thank you all for all your prayers. Thank you Lord !
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Diane50,
I am glad you are doing the FISH test , i do not want to wish you a more aggressive cancer but HER2+!targetted therapies seem to be working. So i wish you what would help you to fontrol the beast.
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I'm so very glad to hear that Penny is doing better!
Hello, Everyone, I think it's time I introduced myself. I have been reading this topic since I was diagnosed with liver mets several months ago. It really helped me to read your stories and learn that it wasn't necessarily the end for me yet. I had had some URQ pain on two occasions, but my blood tests were normal and the doctors mentioned possible gallstones. Nobody thought I was in much danger of recurring. But the ultrasound and PET-CT showed a liver full of tumors. I cried for a week, then got busy dealing with weekly taxol. I had complete metabolic response to it! Now I'm on Ibrance + letrozole.
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ShetlandPony,
It is only normal to be scared and devastated when your worst fear becomes a reality. But thank God you seem to have responded well to taxol and got a great response. I hope Ibrance will keep this result for you for a long time . The important thing is you are well , keep your spirit high so yur body will be well in order to fight this . We are here whenever you feel like talking or venting. Keep us posted.
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Everyone has had so much going on - Penny, hope you feel better & get out of the hospital soon. I apologize for not addressing everyone individually; I've got a lot going on besides cancer, imagine that! Not stuff I care to deal with, either.
Unfortunately, I'm done with Halaven. After a great initial response, the beast has outsmarted it, some of the liver mets have grown in size. Will be trying Gemzar next. My understanding is now that I've been on IV chemo for almost 2 yrs the chance of me having a positive response declines rapidly. I've blown through 3 chemos since September; very depressing. We had "the talk" - not being encouraged to stop treatment, but given the reality of anything being effective at this point.
Hope you all have a good weekend. For the new folks, hang in there, you ever know what might work, we are all so different.
Anyone with Gemzar experience?
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Oh hugs to you SyrMom. No one ever wants the talk especially since we all think about it every day. I pray that the new medicine works for you and that the " talk" faces away in the distance.
Penny- glad you are out of the hospital. Rest now.
woodylb- thank you. I read posts but don't usually have time to resopond as I am busy chasing my 4 littles around.
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Thanks leftfootforward, I hope it continue working for you. Mine is doze dense in combination with Navelbine and I did not see anybody taking this combination. Can't say I'm worried, but hmm...
Have a good weekend everybody
Cheers
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Syrmom,
I am sorry you had to quit halaven and sorrier you had to listen to the "talk". Nobody realyy knows what works and does not work. I hope Gemzar will be the right one.
I had Gemzar upon my liver dx, side effects are mainly fatigue and low blood count and weight gain. It is mainly used in liver mets and uterien cancer. Hoping you will get a good response. My prayers are with you, keepus posted.
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Oh SyrMom, I'm thinking & praying Gemzar works! My favorite go-to-girl is Denny 123...I found her when first dx w/liver mets. I logged on & saw, "10 yr anniv of liver mets." She was on Gemzar...I'm thinking for quite some time. Then, there's bhd...I think she's done 16 different tx. Faith, sister...hope other things in your life settle down...wish I was close enough to help.
Shetland...very happy for good response to taxol! May you be forever clear!!!
Sandilee...hmmm...don't know much about ibrance, but it seems, just reading the posts here, it must be something good. Shetland, however, sounds as though she's getting it as a stable insurance. Is it used for tumor activity? Maybe others have more info. Wishing you healing!!!
Ella...sounds like tykerb must be a good piggyback drug! Hope it works wonders! Leftfoot....glad to see you...is a good example of it working! And I'm a fan of Navelbine!!! Double whammy can't hurt :-).
Laura...hoping your counts are working up & you're feeling good. So happy for your upcoming move...I'm thinking your house sold quickly (missed that scoop), hope boys are happy & the fact you're close to care...awesome!!!
Good Morning, Woody...hope you have a beautiful weekend. I think DH has headed back to Saudi Arabia. Take it easy...I know he showers you with tlc when he's there...soon your energy level will be bouncing upward when taxol clears out...jumping for joy!!!
Love to all...DH and I are going to swim laps in the 1/2 salt, 1/2 chlorine pool that's wonderful. Sending hope for healing...Penny....you're always on my mind. XOXOXO
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Love to all...so much going on...glad to hear Penny, that you are out of the hosptital and feeling better.
Thrilled that Woodylb is showing NED!!!! WooHoo!!! I am doing the dance of joy and then some for you.
Welcome to all the newbies, you will find this a a source of rest, comfort, knowledge, humor and great caring. I know I have lots more catching up to do with everyone. Had my CT scans today, so will get back Monday evening after I've gotten the results. Praying for a wonder filled weekend for all of us. I'm looking forward to just sitting on my back patio and watching the birds and the butterflies for a few hours and resting my soul. See you on Monday!
Debbie
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So happy to hear Penny is doing okay!
Welcome newbies. I have found so much information in this thread.
For all of you, my doctor told me yesterday that we only need 10% of our liver to function. I didn't realize it was that small of a proportion. Loved hearing that. Feel like I have some breathing room with this whole liver mets thing!
Sandilee, I am sorry to hear about your liver mets. Chemo was not in my treatment plan, except that I had to do one "bridge" dose of weekly taxotere before I had the baby out because they can't give hormone therapy during pregnancy. I was switched to hormone therapy immediately after delivery. I had the same question when dx'd and was told that liver mets are treated just like any other breast cancer - wherever it travels in the body, it is still breast cancer.
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This thread is suddenly more active. I apologise if I don't address all of you personally. There are a few new names here, so first of all hello to the newbies on this thread.
Penny, I think of you often. I am glad you are home and hope you are getting plenty of rest. Praying for lower bilirubin levels on Monday.
Ella, thank you for the story of the young mother. It was uplifting. I met a lovely young woman when I was having radiotherapy treatment for my primary. She was pregnant with her first child when she discovered a lump in her breast. Her doctor insisted it was related to the pregnancy but she knew instinctively it wasn't. She finally had a mammogram just before she was full term and they discovered a large tumor. Her pregnancy was induced, she had a lovely baby boy, and days later she had a mastectomy. She was frankly terrified that she would not see her little boy grow up but just two weeks ago I ran into in the cafe at the hospital. She is doing well on tamoxifen. Seeing her again made me so happy that day. I haven't heard of anyone doing navelbine and tykerb together. Have you thought of starting a new thread asking if there is anyone else? There could be someone who is just reading here and missed that you are doing this combo. They might respond to a more direct topic header.
SyrMom, I am on gemzar/carboplatin combo. I am on a 3 week cycle. First week is both drugs and second week is gemzar only. Third week is no treatment. I have just started my 8th cycle and have to say that the gemzar only week is much easier. I am on my 3rd line of chemo since being diagnosed with mets a little over a year ago and this one has proved the most effective so far. I have had regression on my last two scans but I cannot tell and neither can my doctor which of these two drugs is proving to be the most effective.
Benjnate, Hurray for getting rid of that stressful journey! It must have been terrible last winter when you had all that snow to deal with too. I hope the move goes smoothly.
Sandilee, So sorry to read of your progression to liver mets. They seem very small from your description and should not really be giving you too much pain. I have been told by several people the hospital that most liver pain comes from the liver capsule being stretched. When Xeloda failed me completely, it never worked, my mets grew to several cms and caused a lot of pain in my URQ both front and back. I could also feel how hard and rigid my liver had become. The edge of it was palpable. However, each of us are an individual and it could be this is how your body is responding. I should also add that a couple of days after starting my current chemo combo (gem/carbo) the pain increased substantially. Happily that was the chemo doing it's worst on the mets.
Shetland Pony, Wow! Complete metabolic response to taxol. Congratulations!
Debbie, good luck with those scan results on Monday. I hope they indicate a good response.
JFL, In addition to the liver being able to function with quite a low percentage of normal tissue, it also has an excellent capacity to regenerate itself if there is not too much scarring involved!
Not much news from me. I had a phone call from the hospital late Thursday evening to ask me to call in the following day as my magnesium was a bit low and they wanted to start me on supplements. Looking at the dose they have given me It was more than a bit low! I'll find out for sure next week when I meet with my onc.
I'm taking advantage of the steroid buzz and having one hand free while I am moving around the house now to get a few jobs done that have been outstanding and which only I can really deal with.
Sorry again if I missed anyone out.
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I love reading all the posts from you all. Happy Penny is doing better too. Our bodies are amazing; they are designed to heal and after these treatments and how we rebound is a gift from God.
Spring, I have been taking ️Slow Mag for supplement. Avoid regular mag b/c it is rough on stomach and intestines. If you are low on magnesium you will feel more aches and fatigue. Magnesium regulates muscles (heart) and blood pressure. I take 2 ️slow mag in AM and 2 night. I have had to get IV mag when my levels drop to 1.5.
Good luck to those having scans. Happy for everyone responding to treatment. I pray for all of us that our oncs can find medicine that works on these liver invaders.
I am on holding pattern. Waiting for results of Fish test and then week off of tx for my trip to nephs graduation in minneapolis. Only had 1 lxempra (@3 weeks) and am not getting it before I fly June 1. Will start cAncer killing with Lxempra june 8. I guess I am on vacay. Lol. Best wishes and no harsh side effects for all.
Diana50
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Thank you, Woodylb and all for the warm welcome.
My "liver pain" if that's what it was, seems to have abated- just lasted one day,but it was pretty constant. I'm hoping it was a temporary flare up from my new hormonal meds working, and thanks for reminding me, Springwatch,that it could be the case. Makes me feel better, anyway!
Ronniekay, Yes, Ibrance is a new drug used with the hormonal Femara. The trials showed great promise in extending time to progression, so many of us using it are hoping for a miracle.
I just completed my first cycle, and am now waiting for my blood counts to rebound so I can start again.JFL- comforting to know that not everyone with liver mets gets immediate chemo. One always wonders when the cancer progresses, even if we have trust in our doctor, if we're being treated aggressively enough.
diana50- Yes, thanks for the biopsy reminder. I've been wondering how big the tumor needs to be before they biopsy it. Right now I'm on a new med, but as soon as it seems to not be working, I will want a biopsy.
I have a fortune from a cookie I got last year up on the mirror in my bathroom. It says, "You will have good health for a long time." I wish you all my "fortune."
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Sorry I haven't posted here in a while. I follow most days but it seems that I'm here late at night and too tired to post.
Navelbine is mostly treating me well. SEs aren't too bad, fatigue and low blood counts being the worst of it. I was also having leg cramps (and sometimes other muscles, too) and constipation (not for nothing is this drug sometimes called "Navelbind"). A friend recommended a suppement for the cramps which is high in magnesium and not only did it take away almost all the leg cramps but it also took caree of the constipation. So it makes me happy.
When I had my bloodwork Thurs before my tx they also took samples for markers. I could call Sunday for the results of that but I might wait until next Thurs - that way I can at least pretend it's good news for now. Such is the rich fantasy life of a Stage IV lady.
Leah
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Leah, i am glad you posted, we were wondering about you. I am happy Nevalbine is treating you kindly and you will get good results next week. Here it has been busy, some new comers, some good news, some not so good. Like you said it is the life of stage 4 ladies. I hope you will sonn gives good results.
I on the other side had my PET. On the 11th , and the results were good , no evidence of activity of the disease. So i thank God for being so kind to me. I will soon start tamoxifen along with hercptin/perjeta and see how it works. Kisses and good wish and rayers frim to you. Keep us posted. Hugs
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Hello All - Not much to report, just reading the updates here. RonnieKay, I never heard of a salt/chlorine pool but I would love to try it! And JFL, I got a lot of comfort in reading that livers only need 10% to function. Every time I mull that over, it makes me feel better
Penny, prayers and peace to you tomorrow when you find out how your bilirubin is doing. And Syrmom, I commented to you on the 'Halavan' site, but I don't remember commenting that you got The Talk. As I said, you and I are very close in diagnosis, tx, etc. And my Onc is so positive about how many other tx are down the road and different avenues we can try, that I am just shocked. Let me add that my Onc and I are painfully open with each other, and there isn't lots and lots of tx left, but enough that this journey isn't going to be over for awhile for me. I'm mad at your Onc! Lol, but seriously, I'm not G-d and I have no idea when anyones' time is up, but Syr, I just really feel that you and I have a ways to go. I hope I didn't overstep my boundaries, just had to get that out. -
Ok, my fine friends. Tomorrow is a big day for me. I'm asking you, yet again, to storm the Gates of Heaven for me. Please pray, pray, pray, for ONLY great news! Mama needs chemo! Thanks all. Your love and prayers will not be forgotten.
Penny
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Penny, my prayers are going out for you. And, since I live in the Holy Land, it's a local call.
Leah
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Benjnate,
I totally agree with what you said to Syrmom. No one really knows when his /her time is up. As long as there are treatments available regardless of the number an onc has no right to tell his patient to lose hope. I am mad at him too. I hope you both have a long time to go .
By the way salt water pools are actually very nice it is very fashionable in my country since they make the pools along the beaches so they use the sea water and filter it to the pool. Tbis way the water is always clean plus you get the benefit of floating like in the ocean lollll. It is quiet enjoyable. I hope you get to try one.
Love and prayers to you all.
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I had the opportunity to swim in a salt water pool and it was wonderful. The water feels silky smooth and you don't get "chlorine eyes" or a headache.
Just sayin'
Penny
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Penny continiung to pray for you.
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Bilirubin is so high that onc is surprised I'm functioning. Trying lowered dose of Ixempra. I have anywhere from 2 weeks to 2 months to live.
- Penn
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Praying praying praying for you Penny
~e
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praying for you Penny.
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Still praying for a miracle for you Penny
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Adding my prayers, Penny.
Leah
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Praying,praying. praying.
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No...please God...save our sister, our light...Penny...we love you so.
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Penny, I pray for a inner peace and serenity for you (and your family) as you carry through your remaining days on this earth, no matter how long that may be.
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You are in my thoughts and prayers, Penny.
Maureen
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Penny
Praying and thinking of you. God has his arms around you and so do your friends on the boards.
Diana
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Penny,
My heart is heavy with hearing your news and yet His still small voice whispers...
I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.I pray for Him to continue to be with you and your loved ones as your battle continues. Love to you, Penny!
Debbie
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Love you all. There are not enough words.
Penny -
Right back at you!
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Love & prayers to you & yours...from me & mine, dear friend.
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I am also dealing with bone and liver mets - liver so far 1.4 CM - taking Xeloda 3000 mg. a day - fatigue side effects severe but otherwise doable. My heart goes out to Penny - one wishes we could reach out through cyberspace and give great big hugs.
I have what might seem like a simple question - does anyone know if "lymphatic' massage is O.K. to do? I have read conflicting info - but someone recently told me it could help spread the cancer through lymph and blood??? I am scheduled for one on Friday and now not sure I want to follow through. Susie
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apackoftwo...Why are you having a lymphatic massage done? They are aware of your medical history, right? Sorry I have no advice...seems to me it's the same fluid, just being helped along the path...but I'd consult with maybe an oncology pt.
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Ronnie Kay - I actually read about lymphatic massage on the American Cancer Website which said it was O.K. - then yesterday my chiropractor told me he had a patient who had lymphatic work done and her cancer went viral - so I think I will go for the massage but just get a regular one. One of the side effects of Xeloda for me is muscle aches to the point of being painful and my onc says I can't take Advil, aspirin - only tylenol which does NOTHING to alleviate soreness and pain. I am reluctant to start on the heavy duty pain meds until I absolutely have to.
Another question, which maybe I should post on the Xeloda thread, but..........wonder if anyone else experienced an initial response of tumor markers going down and then beginning to rise again - not a lot, but definitely up - so they increased the dose from 2000 mg. a day to 3000 and last test they were stable - not up but not down. I am due for a scan at the end of this month.
You girls are all so involved in your treatment and so knowledgeable - I am in awe - I was at first but recently I feel oddly detached from everything - like sleepwalking through taking meds 2 x day, going to appointments with onc, doing blood work and then just sort of saying "ho hum" when getting bad news. Have started Lexapro and hope it works to kick my booty out of this flat place I seem to have landed in. I am usually the go to person - the research queen and now I am just tuckered out by all of this. I suppose we all go through periods like this - I find reading all of your posts so helpful - if nothing else, I don't feel so alone. So thank you, Susie
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Apackoftwo,
I would ask before doing a lymphatic message, because last year i travelled to Portugal and tried to get one at a reputed spa. They refused, when i filled a form stating if i had any disease and cancer was mentionned. They told me it would help spread the cancer.
However, i do get messages but relaxing or therapeutic ones. It helps with muscles pain.
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Apackoftwo I don't know much about Lymphatic Massage, but I would not take the chance. On a related topic, I was told by my oncologist and by several chriopradtors, that chiropractic treatments can also help spread bone mets. Before I had bone mets I had fallen on the ice and went for Chiropractic treatment. The Chiropractor wanted my onc to sign off that it was ok to be treated. So I would advise against that also.
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Haven't read Ella's post yet...but am glad others w/experience answered your question, Susie. I'm thinking I'm glad I've never had a massage or been to a chiropractor :-). Funny thing...when I saw onc in April, I told him my right lower rib was still sore months after irritating it. He said they don't heal quickly...have patience. I said the dr said a chiropractor could fix it in one visit. He looked at his fellow & they both shook their heads and said no...don't go there. Maybe that's why.
Another concern is taking Tylenol. With liver mets, I'm surprised your onc hasn't told you not to use it. It was the first thing my onc said...only to use Ibuprophen, and only as necessary. I realize you have pain, and I hope there is something that will alleviate that...but no Tylenol, ever (do I sound like a mom, or bossy big sister????). And....thank goodness for our friends who do more research, read more & share more...I think we all have moments where it's all too much...I'd be lost without you all!
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I was told by a professional who treats lymphedema that lymphatic massages can spread cancer. Just sayin'.
- Penny
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Well this has been enlightening. I must be breaking all sorts of rules. I have lymphatic massages quite frequently. If I don't , my left side gets all tight and doesn't function. Of course my lymphatic massage could be different than others. If I don't get that fuid moving I get so tight I can't lift my arm above my head and it limits my ablity to move it. I have never been told not to do it.
I have also never been told to not take tylenol or ibruprofin. I find it interesting that you have each been told the opposite thing. Why did they tell you not to them? I also have continued to drink milk while on Xeloda. Again, nothing I was told not to do by my doctors, just something I have read here in the forums.
I think that even docotrs don't know what to do with stabe 4 disease and so that is why there are different opinions and directions on this forum. I might have to reevaluate. I see my onc next week so will have to ask about a few of these things.
I am thankful for everyone out there on this thread who shares their inforation and experiences. It allows me to make better choices for myself. Never too late to change things for the better.
Apackoftwo- to answer your Xeloda question, my tumor markers go up and down every cycle. Somtimes it is out of the normal range and then it will go back down. I wouldn't be too concerned unless there is a drastic change in your numbers or the trend continues upward. I have finally gotten to the point where I don't freak out when my markers go up unless it continues for more than two blood draws. This has only really happened twice to me. Al lthe other times , the markers have decreased to within normals limits. So I would keep track but not worry about it unless you see a drastic or continual upward swing in the numbers.
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Good morning Penny,
I hope you are doing OK this morning and feeling comfortable. I think of you often and continue to pray that your new chemo is working.
Love, spring
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Regarding lymphatic massage, I don't see why you shouldn't have it, if it is giving you relief. Cancer cells can spread through the lymph and vascular systems. We all know that we find cancer in lymph nodes and the blood. The interest in liquid biopsy and circulating tumor cells would not have come about if the cancer cells were not present in the latter.
I can understand the concerns of some who feel that pushing around the lymph fluid during massage may be causing the cancer to spread. However, the lymph and blood are not static systems, They are constantly moving around our bodies no matter what.
I wouldn't have lymphatic massage to a leg or arm where there is active cancer. Not because of the risk of spread but because of the inflammation in the area from the cancer could be made worse by the treatment.
Just my point of view.
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I have lymphatic massage all the time and I agree with spring watch. My understanding is that the lymph fluid drains into the urine and is flushed out, so I see it as a benefit. If there are cancer cells in my lymph nodes, they possibly could be flushed out of my body when I am getting the massage. My lymphadema therapist told me that vigorous exercise does the same thing, gets the lymph fluid moving.
I have been Ned for over 4 years now, but got them when I had active liver mets and continue to get them
Laurie -
Penny, sending you love & prayers. Thinking of you all the time.
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I take a fair amount of hydrocodone/tylenol prescribed by my oncologist. I've questioned him about the tylenol and he says at the level I use it, it is fine. I never take over 5/325 mg. of tylenol 2 x day. If my pain requires more than that, I use morphine. He also recommends Aleve instead of Ibuprophen for inflammation. Of course though, all of our situations are different and I'm sure recommendations have a lot to do with our liver function lab results.
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Penny, you continue to be in my prayers.
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Interesting perspective that some doctors recommend avoiding Tylenol and Advil. My doctor hasn't prohibited anything. After my C-Section (a week after diagnosis), I took horse pill, prescription ibuprofen for a month, partially for the surgery recovery but primarily for severe bone pain. I preferred ibuprofen to the narcotics. Now that the bone pain is almost gone, I rarely take anything. I use heating pads and rest first when possible.
I am curious, how many of you avoid alcohol completely or have your doctors recommended it? I don't drink much and have scaled back on the minimal amount I do drink even further since diagnosis but will enjoy a glass of wine with dinner here and there.
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Sarah...are you saying you take (5) 325 mg Tylenol tabs 2 x day? I've luckily never had to take much of anything for pain, but before mets, Tylenol was my preference. It wasn't until liver mets that my onc said only ibuprophen or Aleve...and she was very firm about it. She was also firm about no alcohol. I don't care for it anyway (except for a Baileys at Christmas, which she said I could have after my first stable scan...but I didn't), so that hasn't bothered me at all...except for wine at mass...which I've only had 3 times since dx. I just figure if I can have control over anything in this journey...I'm taking it. True...there are so many different attitudes/opinions/interpretations, etc, when it comes to this disease. If I hadn't had to see a new onc, due to former onc's health issues, I'd still be on chemo. Seven months later, I'm so relieved...but every now & then, I'm nervous. So goes the practice of medicine.
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I didn't ask my dr about alcohol, but I quit drinking after I was diagnosed with liver mets. It's been almost 5 years and at first it was hard, but now don't miss it.. I also quit drinking soda and that was much harder for me than the alcohol.
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My liver mets were pretty extensive from the start, when I was diagnosed in June 2014. I've got plenty of mets in my bones and lungs as well. I went through a reform period last summer, where I swore off all risky food, including alcohol (not a food, I suppose!). But eventually, I tried a glass here and there... and then experimented some more, watching the constant liver scans and liver enzymes for a correlation. For me there was no correlation between drinking and liver function or disease progression.
I've had a great year and have been feeling good pretty much the entire time -- but I'm working 1/2 time. My liver mets didn't respond much to Fulvestrant, Femara or Affinitor and I finally went on to Taxol this February. Taxol is working! My liver mets have declined dramatically and my liver enzymes are perfect.
And I've been drinking like a non-cancer me. So go figure.
My oncologist can't recommend drinking, of course. Who can? But she knows I drink sometimes and she is clear about when she needs me to stop so we can check our a glitch in enzyme results.
Even Taxol has been pretty easy to live with. I've found the biggest factor in my live with all of these treatments is how much I exercise, not how much I drink.
Suzy
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Confused about how to get around on this site, but here goes:
Hi, I am a real newbie... diagnosed with BC about 2 weeks ago... surgery was set for May 22, but now is cancelled due to a PET scan that shows a tumor in my liver also. They want to start me right away with chemo... I will go shortly for a liver biopsy to determine what kind I need. My BC is grade 3, HER2 + I know nothing about anything... a new journey for me. I was pretty bummed out this morning when they told me about the changes and my liver, but now I am ready to go and you all give me great encouragement. I'm already crocheting a hat for after I start. I do fear the nausea. Not sure how I will do with that. Don't know yet what they will prescribe for me. I'm in FL right now and want to go home to NYS for the summer... not sure how that will work with the chemo. I like my doctors here but have a chance to go to Sloane Kettering... Is it a good idea to go to a big well known place for a second opinion, or just to go forward as is. I will stay here in FL until I get a complete plan in place. (I like plans, but looks like it's hard with this... things change from day to day.)
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Thinking about you, Penny...please let us know how you are doing whenever you can. We're all here for you and praying for you! Miss your daily words of wisdom....
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My doc has no problem with my taking ibuprofen if necessary, but I don't have much pain. Mostly headaches from the Letrozole, but I only take it occasionally.
I stopped drinking alcohol after my liver mets popped up, too. Doctor never said anything one way or the other and I have no real knowledge that it makes a difference. I just feel that doing what I can to protect my liver and keep it healthy is important, and abstaining certainly can't hurt.
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kcoralee - I'm so sorry about your recent diagnosis. I hope you find these boards as helpful as I have in understanding this new world. I think I'm just about 3 months ahead of you as I was recently diagnosed stage IV with one met to my liver and am her2+. I am now through my 4th cycle of Taxotere, Carboplatin, Herceptin and Perjeta that I do every three weeks. I will be getting my first scan since I started chemo next week to see how it's working. If my cancer is responding nicely I will drop the chemo at 6 treatments and continue on with herceptin and perjeta. I can no longer feel any sign of cancer in my breast so my fingers are crossed that it is working well. If not, I'm not sure how much of that treatment I will be able to handle as it's starting to really wear on me. The worst side effects I've had is fatigue and low blood cell counts. Days 3-9 are the worst and then you rebound. To be honest, it's been easier than I thought it would be and it has gone by quicker than I thought as well. So good luck to you and I'd definitely suggest going to Sloan Kettering when you're in NY. I'm getting ready to head out to MD Anderson to get advice on surgery and liver treatment options. If you're like me, you'll have about a 10 day window between treatments that you'll be feeling well enough to travel. Good luck with everything and feel free to PM me if you have an questions!
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RonnieKay, sorry my message wasn't clear. I take hydrocodone 5mg with 325 mg. of tylenol in it 2 times a day. I'm so used to the abbreviation hydroco/apap 5/325 I didn't think about it not making sense to someone else.
When I was pretty sick right after my liver mets diagnosis, I way telling my doctor that I had totally lost all taste for any type of alcohol. I didn't even want a nice glass of wine with dinner. He told me he hoped to have me back enjoying an occasional glass of wine with dinner quickly. He was successful
I love good craft beer so I have maybe a couple a week if I am out and about or a glass of wine with dinner a couple of times a week. I know it puts additional stress on my liver but I'm not giving up everything I enjoy. -
praying for you penny. Hope things are stable and you are doing better. I just started Lxempra for liver mets. It's a good chemo I think.
I pulled back from drinking wine to protect my liver however I think an occasional glass of wine probably won't hurt. Haven't discussed with onc. The Lxempra makes me feel sick for 10-13 days after infusion and basically don't feel like eating let alone wine.
My Fish test came back negative. Still have biopsy samples sent to Foundation One for genotyping. My onc says "for later " I guess if I run through other tx. Who knows. There is also a lesion on dura in my brain but they think beign. Having another scan next week to look at it again. I tell you if it isn't one thing it's another.
Leaving June 1 for nephs graduation in Minnespolis. Can't wait. So there is light at the end of the tunnel. Neph is just starting his life ; I pray I (we) can continue life too.
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I haven't been keeping up with this topic very well and I want to reply to everyone, but I think I'll just have to try and pick up from here. Thank you woody and others for your responses and welcome. Woody said " when your worst fear becomes a reality" and that's just how it feels. But I am still here.
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Apackoftwo, I can relate to what you said about usually being a research queen but feeling tuckered out. It can be time-consuming and mentally exhausting. It's not just mastering a new body of knowledge, but there's that feeling that your life is on the line. With my first diagnosis I was constantly on the internet reading the NCCN guidelines for physicians, and articles in medical journals, getting my "honorary degree" in oncology. I realized at some point that one of the reasons I did that was that I didn't fully trust that my onc had enough knowledge, experience, and interest in my case, especially since I had premenopausal ILC. He would follow the standard of care, but was not interested in discussing the questions that my research brought up. And when there were important choices to be made, he would say it was up to me! So I found a new oncologist at a better place. When I had the recurrence, I decided that this time I wanted to spend more time and mental energy on my family, and less on research. Also, the thing I was so afraid of had just happened, so what good was all that research since I hadn't listened to my own advice? So, oddly, I both trust myself more to apply what I learn now, and relax and trust my onc more to look out for me. I still learn about treatments and follow the conference news (can't help it!), and listen to my body and intuition, but I do not carry such a burden because I believe my new onc knows more than I do, and she welcomes my thoughts and questions. Does that make sense?
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I went in today for Navelbine but my neutrophils were too low again.It seems that I've been following a pattern of 2 weeks on, 1 week off even though it's supposed to be every week. I had 1 Neupogen shot last week so we're trying 2 this week.
There is good news - my TMs continue to go down. CA 15-3 is 344.4 (was 452.3 last month) and CEA is 9.4 (was 10). PET scan will be in June so we'll see what's really happening.
Leah
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Leah s-
I hope great things for you. Your numbers are promising. I can't remember if you have had neupogen before. If you have heard this then I apologize for the repeat. But neupogen can cause a lot of bone pain and taking a Claritin can help with that. Just thougth i would put that out there.
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Leah,
When my neutropils were too low i took three neupogen in row to bring them up effectively. Like leftfoot said claritin helps. You do get some bone pain for few days then it is back to normal. But neupogen does help in keeping your schedule.m
Your TMs look promising oI hope they continue to drop until the tumors disapear. Be well .
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Leah, Yay for the tumor markers going down!
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Thanks, everyone. I've had Neupogen before and I take the Claritin. It usually helps - unless I also have Zometa in which case it's achy bones. Fortunately, Zometa is only every 8 weeks.
Leah
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Sandilee...I'm on track with you, doing whatever I can do to keep my liver happy, and I know my family would have my head if I wasn't doing all in my power to take the best care possible. It's possible it won't make a difference...but I'm not good at regrets!
Sarah...glad for your explanation of meds...I thought I might have to do a Tylenol intervention...LOL!
Diana...excited that your trip is close! Praying the spot on the dura shows benign, just as they think! I'm a bit saddened by the negative Fish...which sounds corny...I'm in this mess thanks to her2! But...it does provide some drus w/extra punch.
Shetland...it makes total sense. Proud of you for trusting yourself & poring yourself into what's most important!
Leah..joy, joy, joy....TM's going down!!! I think Navelbine does a # on everyone's white count. After the third time I was going to miss chemo, my onc gave me neupigen, 3 like Woody, to get on track, then I started getting neulasta after every 2nd tx (I was on weekly tx). After 6 mos, I officially went to 2 weeks on, 1 off...the neulasta given after 2nd chemo (and then my week off). Never missed another chemo. I went to that regimen cause I felt like crap and that's what SueOpp was doing (love my bc sisters) so asked onc & she approved it...it was magical for me! Good luck & may it bring you healing!!!
Kcoralee...my heart is aching for you...but it sounds like you're full steam ahead...and I applaud you! Good luck on your biopsy...you may follow Josalive in tx. Josalive...I had your same tx in '09, w/out perjeta, of course. I was stage 2, grade 3. At that time, when chemo was over, herceptin went for a year & then AI only. On my 3rd (mets) dx, my onc said she knew I should've stayed on herceptin, with first recurrence, but it wasn't protocol for stage 2. I detest stage 4...but w/her2+ ...now h/p are protocol so, hopeful it keeps working! I felt pretty good on Josalive's same tx..fatigue, but.no nausea, a little indigestion, but watched what I ate closely. Day 3-5 were slow days for me, but I took care of a 1 yr old grandson & we napped together & did library, parks, etc, and I never missed a day with him. My onc called me a poster child for chemo...little did we know then, it'd be my drug of choice for 22 months, 3.5 years later. Sorry for the blabbing. In the car on a 4 hr drive. I'm holding you all hostage!!! Thinking of you all...have a lovely weekend.
Penny...you're in my thoughts, prayers & heart always. XOXO
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Hi All,
I haven't been around for a while so I have a lot of reading job to do :-)
Penny, I just read your post. Hang in there darling. My heart and prayers are with you.
Just a little update on me. Markers are up.....again - now 600+. No changes in the liver - so the decease is stable there. As Pet/CT is not reliable for me we are going to make SPECT/CT. I'm not sure what the difference is. Today will try to meet the doc who is in charge of this. I don't know what to pray for :-( Obviously there is progression somewhere. And why Navelbin is working for the liver mets - keep them stable and isn't working for other cancer - wherever it is. WHTF?!? Feel so tired of all this stupid cancer game.
Christina -
Leah, the trend of markers is good - smile and keep going.
Woody - kisses for you my darling. Sorry for my disappearing. I needed a break.
Diana, so sorry to see you here but welcome, The girls here are amazing.
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Kiss77, I wonder if they should use MRI since you have ILC.
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Shetland, my onc wants to check the whole body. I'm not sure if I can make MRI of the whole body but if it's possible I can discuss that with her.
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Kcoralee,
I am sorry you are here on his thread but glad you found us. It is quiet a spectacular group here , very helpful and kind.
I know how scary it is to find yourself in stage IV and with liver mets, but thank God for all the treatments available. Sloan keatering is the place to be for this and i hope you get a good advice and a good oncologist.mit is very important to chose one who makes you feel comfortable and whom you trust.
If you liver mets are Her2+ my guess is that they will start you with the latest and most succeful combo to date. Which is taxotere/herceptin/perjeta this is if your liver mets are still the same as your original cancer.
I am getting this combo since november and the first scan showed complete response, and a week ago the second Pet scan showed the same . I will be stopping chemo this week and staying woth herceptin , perjeta and will add tamoxifen.
So you see no one can tell , and i wish for you the same results hang in there and keep us posted.
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Kristina , i am so happy you finally decided to post. First i am glad your liver is holding in stable yayy. But what about the TMs rising? I know it is frustarting and depressing to find out there is another progression somewhere else. But do not give up and hang in there until they find out where it is. I do not understand why PET/CT is not reliable for you. I use the same and it is very informative. And i am ILC . it could be the bones.
Mine showed three months after my initial treatment for liver mets. I had no symptoms and was feeling fine.
If your onc thinks it is the bones maybe this is why he is requesting MRI even thoughif it is bone the forst thing he should do is a bone scan then a PET or a scan . PET shows all the hypermetabolic activity in the body and most doctors rely on it to know where the cancer is ir where it is headed. Whether you are ILC or anything else.
Keep us posted on what happens. My prayers are with you and don't stay too long without posting
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Diane50 ,
I hope your brain shows negativity to cancer and i am sorry your FISH came back negative i know this sounds crazy but nowadays it is giving good options.
I did a genomic test called intelligence testint and after two negative FISH when the test results came back , it came back with all sorts of genes and things but it also came back woth a CISH test which said i was highly her2+ . I was started on her2 targeted therapies back in november and the results were astonishing , complete response . Thanks be To God.
I hope you get the same resulta from the test. Prayers and love.
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Woody, thank you for the warm welcome :-)PET/CT last year didn't catch the mets in the liver. I don't want to use it again. Mets in the liver were seen by ultrasound with contrast. So we desided to use SPECT/CT this time for an internal organs and maybe bone scan - the last is not confirmed yet. I'll know more next week. My SPECT/CT will be in the middle of June.
I'm so glad to read about your good results. Keep going! May this lasts forever, Woody :-) Kisses
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Shetland,
I was smiling when reading your post , because i was exactly like you when diagnosed with cancer i read al, there is to read and argued each and ervery treatment suggested by my oncs. I am ILC as well and ILC is really very confusing. I was lucky i have wonderful oncs they both listen and discuss every treatment with me. Until now they haven't let me down and i am doing well. I like you keep up with all the news about cancer and new treatments but like you i stopped searching , because really with what there is on the net it could turnyour life into a lving hell. A lot of studies are old and statistics are very general. Each and every cancer is different and you get lost in all the contradictions.
If you trust your onc so just listen to her and of you are not convinced ask for more explanations.
I wish uou good response and stability and peace of mind.
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To all the ladies whose name i missed since i have missed few days of this thread, i understand your discussion was about messages, tynlenol and drinking.
Well i do messages and they make me feel good there are contradictive opinions about them but i go woth what makes me feel better. I do not take a lot of pills , i was precribed solpadeine when i was first dxd after the surgery , it is basically paracetamol , codeine and caffeine. I frankly never used it so much. Now i have naproxene which i also rrarely used. I do have some pain between now and then but i choose not to take anything as long as it is bearable and the pain goes away. All the treatments we are subjected to cause pain . As for drinking . I am not a heavy drinker , i am an occasional one. I do have a beer or a glass of wine between now and then. Some meds will raise thenliver enzymes this why onc prefer to have us quit them so there is no confusion between progression or the liver reacting to some med. i was taking a statin my onc stopped it and told me to go on a cholesterol diet because it was rasing my liver enzymes. Anything can raise liver enzymes from panadol to the chemo we take. So i am carfeul but not onssessed about it.
To all the newbies i say welcome to this thread and i am sorry we are all here and to the rest i say do everything in moderation unless you are told otherwise.
Prayers and love to all !
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Woodylb, is a CISH a newer test? I have heard the term but don't know much about it. How is it different than a FISH?
Kiss77, what is a SPECT/CT? That one is new to me.
I love learning about all the new options here from each other in case I need to ask for them down the road.
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Thanks woody for your insight on Her2. I hope Foundation One can come up with options. Thinking I will ask for more testing of Her2.
Leah hate missing chemo but good news marker is going down. Keep at it.
this board helps me so much you have no idea. Liver mets are scary. I hope the Lxempra can kick ️its butt to the curb.
I only wish good response and tolerable side effects to all. Thank you from the bottom of my heart.
Will miss chemo next week as leaving June 1-4 for minneapolis to attend nephews graduation. Then my next chemo is June 8. And back at it. My onc believes the lesion in dura is beign. One more scan before I leave and then back kicking cancers butt.
Best
Diana
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JFL,
CISH test is a test like FISH used to confirm HER2+ or deny it. It is newer than FISH and uses different criteria in determing if the patient is her2 or not. It is as accurate as FISH. I do not know why my FISH failed two times nor do my doctors. All i know is that CISH gave me more options which in turn gave me more time. It is also not standard yet so it is not covered by insurances or others.
It was apprived by the FDA in 2008. But my liver biopsy was borderline Her2 this is why i was tested for FISH , also after my genetic testing on the sample sent to Germany my cancer showed to be hetergenous. Meaning, this same sample contained places which were full of her2 copy while another slice showed none. But the doctor who studied the sample told my onc to start me right away on her2 targeted therapies. The test also stated what chemo i will most likely respond to and which less likely and which not at all.
All results were backed up with scientific studies ranging from reliable to less reliable.
I found this link on BCO which explain CISH testing i hope you find it helpful.
http://www.breastcancer.org/symptoms/testing/types...
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Diane50,
You are welcome, I hope the foundation finds more information which will give your doctors more insght on how to treat you. Have a good time at your nephew graduation.
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Christina, this is very strange are your sure it was a PET SCAN? Because PET scan are used mainly to meausure all hypermetabolic activity in the body , they use a specific acticity called FDG uptake and the SUV is the speed which indicate how fast the activity is. So even if it does not show the activity is read on the hot spots in the body. PET scans are not used only on one area of the body they are used all over to check for mets . My liver mets showed first on a contrast scan , however bone mets were neither confirmed or denied by MRI or bone scan. They did not show on the first scan or they did show but with no activity. After using Aromasin for three months they lit like a christmas tree.
You are right ultrasounds with contrast are effective in detecting liver mets. But please inquire more about PET to my knowledge it is still till now the most accurate in detecting mets in the body because it counts on tracers injected in your body and not only on the scan.
Thank you for your warm and genuine happiness for my results , i wish the same for you and everyone on this board. I am very thankful to God and overwhelmed . I take it day by day and let him lead
.I hope your next scan will give you good results and for real nothing shows. Kisses and keep me posted and don't disapear lolll.
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Yes, Woody, I'm absolutely sure - last year i made PET/CT test. And I was so relived to see there is nothing and then BAM!!! Then I spoke with other persons - for them PET fails too. It seems there are such cases.
JFL - This scan is new for me, too. I know the idea of the PET tests but I don't know what is the difference between PET and SPECT. I have a lot of questions and I'm going to ask my oncologist on Monday or Tuesday.It is made with contrast and creates 3D images....
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Kiss...cells can be so small they're hardly/not visible & then...they are. I had a perfectly normal scan Ct scan 6/12...had diep flap...and 6 mos later, a liver full of tumors. It's frustrating. Happy Sat to all...Sun to my far off friends!
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HAPPY BIRTHDAY, SHUTTERBUG!!!!
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Christina,
Six month before my liver mets dx something showed on an abdominal ultrasound. I told my onc who requested an abdominal scan and nothing showed. My TMs were below normal . Then six minths later i had a liver which lit up all over in both lobes. Both radiologists and oncs told like RonnieKay said when the cells are microscopic it nothing up to date can detect it.
But i will ask about the SPECT/SCAN to see what it is about. I hope this scan is a good ine for you.
Have a nice weekend! Kisses
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RonnieKay, have a nice weekend xoxoxoxoxo
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WOW, woodbylb... what really great news... about your success. I love success stories. Thanks for your feedback on sloan kettering. I will definitely look into it then. My daughter suggested it and says I may be able to get a free flight there when I get back to NYS. I'm currently in FL and because of the speed of growth expected of my BC cells, I chose to stay here and get started as quickly as possible. Good choice I think... obviously the docs are very thorough and I hope to start chemo this week. had my liver biopsy but no results yet. They had trouble getting samples ... it is small and behind a vein, so hard to safely get samples. We'll see. The docs are surprised to find anything there from the BC, because only two other minimal, uncertain things and neither showed up in lungs or bones. I will probably have a brain scan too at some point. but I want them to begin chemo quickly. I think the doc had the same meds in mind for me... Glad to hear it went so well... Did you have many side effects? So I'm playing the waiting game now and actually feeling good, except that I'm in a hurry to get started. Thanks so much for taking the time to write me. It helps so much. Hope you do well on the reduced meds.. that's soooooo great.
Love to you,
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Woody, I'm so happy to hear of your complete response to HP! That is awesome! My liver was also full of tumors in both lobes, and showed complete response to Taxol.
Since I was diagnosed with a new (?) primary in the breast at the same time as liver mets, my doctor proceeded according to the breast biopsy that showed ER+ PR+ HER2-. She said a liver biopsy at that point was risky, and we would save it for later if there was suspicion of a change. Looks like she made the right call. I'm glad to know about the CISH test for future reference. She also said that if one or two spots pop up in the liver in the future, she will have me see the liver oncologist about the possibility of local therapy for that.
Can you tell me the name of the genetic test you had done in Germany? Is it different from Foundation One? I had FO, but it didn't show anything they know how to target yet.
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Diana50, I hope you have a great time on your trip to Minneapolis for your nephew's graduation! I hope you can be there "in the moment" and get a mental break from stupid cancer stuff.
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Kcoralee, I just wanted to say hello and I'm glad you found us. What a shock for you, and what a whirlwind of appointments. But I'm glad you don't have to wait too long to start treatment. A lot of people say they feel better (emotionally) once they get a plan and start in.
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Shetlandpony
Thanks for wishes on my trip to nephs graduation. Actually feeling pretty good as trip will be at end of last chemo. When I return home will be back at it June 8. Haven't had a trip for 2 years as was too sick so I see this trip as a victory. Woot. All my family is in Midwest.
Will be anxious to get results from liver biopsy from FO. Hopefully something recommended. 👍. Interested in other places that look at biopsies too. Stupid cAncer. Yep.
Everyone have good weekend. Will be watching Indy 500. 🚗
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All,
Haven't been on for a week....have been reading, but not posting much. I have been so upset by our Penny's distressing news, that I didn't feel right sharing my own good news. But then, my very smart daughter (a five year breast cancer survivor herself) urged me to share the hope...we all need hope so very badly while enduring this horrible disease. So, I copied her Facebook post about me below:
"Six months ago my Mom went to M.D. Anderson Cancer Center of Texas after finding out her breast cancer had metastasized into her liver. (4 mets were found) She was told she only had weeks to months to live...to tie up her affairs and basically plan on dying. I can't begin to tell you how much this crushed her hope and her amazing spirit. She literally did "plan on dying" and was hesitant to go thru anymore chemo treatments and spend her "last days" being sick.
After much debate, she returned to the CTRC and her wonderful oncologist named Dr. Elledge. He immediately told her not to give up!! He filled her with hope and put plans into action to fight!! She began chemo treatments, continued working and had regular check-ups and scans with a team that built her back up. And now, eight months later...past the "death date" given to her previously....she is not only alive but cancer free!!! Yes , you heard me right...the tumors are GONE!!
I write this not to bash M.D. Anderson Cancer Center but in hopes that these words are NEVER spoken to anyone else again. No one can predict someone else's future (even in the worst case scenarios that so many are faced with). Hope and the simple will to live are powerful tools in the fight against cancer!!! Please choose your words more carefully...we need all the hope and positivity we can get."I'm so proud of my sweet girl...she teaches me how to hope and care and believe. My wish is that all of you get a dose of hope from this. Even though the "battle" is probably not over, I have a reprieve...as I'm triple negative, I will simply go off chemo and scan every three months. We know the Navelbine kicks my particular cancer's butt, so we will leave that weapon in the arsenal for future use.
Blessings to you all and hope you have a great weekend!
Debbie
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Debbie the good news hold us up. I want to know when people respond to treatment. When tx fail or people run out of options we need to know this too.
CAncer is our reality. Staying in reality for me is keeping me learning about options, my compassion for others grows each day and prayers reach out to hold others up.
Good news. Keep posting. 👍. Bad news keep posting. We are all in this together.
Diana
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ShetlandPony,
Wonderful news that you had a complete response to Taxol. But i am a little confused , on you history it says 2011 dx stage 1A then it says 2015 liver mets and you posted you were dxd simultaneously with liver mets. So i am a little confused. When was it that you got Taxol? And had a complete response. This is for my own info since i have ILC too. Is your liver still clear? I responded to chemo only at my first dx along with femara for three years. The two chemo i got after my liver dx didn't do much for me. It is known for ILC not be very responsive to chemo , the percentage is low. However, taxoteres are according to the test i did chemo from whoch i could benefit. So now i am wndering if i responded to taxol ot H/P. my doc thinks it is most likely HER2 but he did say we will have to wait and see.
My test is caller molecular Intelligence testing .
It was made by Caris life sciences obviously their main office is in Arizona , but mine was performed in Gemrany here is the address:
4610 South 44 Place, suite 100 / Phoenix , AZ 85040 /(888) 979-8669/ fax (866)479-4925/
/ CLIA 03D1019490/ Zoran Galactica, M.D.Dsc, Medical Director Caris MPI, Inc,d/b/a Caris Life Sciences
This is not covered by any insurance and the cost in Germany was 6500$ While CISH is approved it is still not a standard test while the other tests are still investigational. But i went for it anyway because i know alot of onc are using it in extreme cases. Good luck. I hope this helps and i do hope the foundation performs such tests.
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Thank you Kcoralee, for your kind wishes. I hope you start very soon you chemo since you say your mitotic rate is very high. You are her2+ did they suggest also her2 targetted therapies with chemo? If they did not , well they should simultaneously. I hope you get the right combination and get excellent results. Prayers.
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You are so right. I am very anxious to start my treatment. I think you soooo for responding. Yes, it is always a blow, isn't it, but I am 72, have done a lot and if I can sneak out 10 more years, I'll be more than grateful, (until I hid 82 and want to keep going... LOL)... My biggest problem right now is I'm 3-4 weeks out from diagnosis and no treatment yet, but they say that this week, if they determine it's right for me, they will start chemo... they are a little surprised to find it in the liver, so did a liver biopsy, but the doc who did it says that it was very hard to get the cells, so don't depend on the results... oh well. Let's just get started. I suppose once I am started... I'll be sorry not to appreciate a little reprieve like now, so I need to enjoy my couple of days free from doing anything... I guess... but no one can do that, can they? So this afternoon, I will be back to painting. I am an artist, focusing on watercolor. I just finished a book (only days before diagnosis), "International Watercolor Artists, Book 2" and the darling artists from around the world have sent me all kinds of wonderful caring notes on FB. It is so uplifting. So, for now, I'm doing great... but it makes a huge difference to hear from my BC new friends. Love to you and good luck on your next step.
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Thanks, Diane... a very uplifting note. Just starting the journey, but certainly soothing to know you are all out there routing for each other. and me.
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ShetlandPony - I haven't been on since I posted as I got a stomach bug that knocked me down for a few days - Yes, yes it makes perfect sense - besides the research we do another thing you said rings so true for me. It took me 3 years to find an oncologist I trust. It is so very important - I didn't realize how much stress and anxiety was due to not having complete faith in my medical providers - when I changed doctors, all of that added stress just kind of dropped away - and what a relief. She actually spends more than 5 minutes with me and talks to me - explains my choices, why she may think one better than another, the down and up side of each, etc., and then we make a decision together. As for the research, I am also with you - besides being time consuming it is mentally burdensome after awhile - I do not have any family so all of my care is up to me and I find just coordinating all the appointments, etc. about all I can handle right now. Also, I want to have a life, even if a bit limited. I want peaceful time for long walks with my precious dog, Ollie, yoga, tea with friends, good books................so thank you for your honest sharing - it is good to know you are not the lone ranger regarding the myriad feelings that go along with this journey we are on.
Also, thank you all for responses to my post about lymphatic massage - I cancelled that and just had a swedish massage with a women with magic hands and fingers - it was lovely!
Susie
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Apackoftwo, i am glad you enjoyed a massage to me it is always relaxing !
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Woody, sorry for the confusion. The choices available for setting up my profile don't tell the story clearly. I'll try to explain as briefly as I can.
In spring 2011 I was diagnosed with ILC: stage 1, grade 1, ER+ PR+ Her2-, ITCs in sentinel node, Oncotype 16. It was palpable (I found it) and it showed on mammogram and on MRI. Lumpectomy, re-excision, radiation, tamoxifen. I was premenopausal. During my time on tamoxifen, blood tests showed very high E2 and fairly low FSH, indicating that my lack of periods on tamoxifen was a trick and not menopause.
Winter 2014, my yearly mammo showed something in another area of same breast, bi-rads 3. Had ultrasound, told to re-check in six months. Summer 2014 ultrasound and yearly MRI showed the same area, now bi-rads 4. Biopsy showed ILC again, still ER+ PR+ Her2-, but now grade 2. It was palpable. (Stopped tamoxifen at this point.) At the very same time this new breast diagnosis was going on, I had an ultrasound for intermittent URQ pain that showed a suspiciously lumpy liver (blood test showed normal liver enzymes). PET-CT showed liver metastases: diffuse involvement of both lobes of the liver and large tumors (blood test starting to creep out of normal now). It also showed activity in retroperitoneal nodes (typical ILC site, as you probably know). So, as the teenagers say, "epic fail" with tamoxifen.
My onc said we would try to put the cancer into remission with taxol and then put me on an aromatase inhibitor (with lupron for OS if necessary). So a week after the PET-CT I started weekly taxol. After three cycles (three weeks on, one week off) a PET-CT showed complete metabolic response; in other words, the shapes of dead or dying, shrinking tumors in the liver but no active cancer, no FDG uptake anywhere--breast, liver, retroperitoneal nodes. My onc said that such a fast response was unusual. I had two more taxol cycles for a total of five. Blood test now showed high FSH, indicating that chemo had kicked me into menopause, at my age surely permanent. Went on the AI--tried aromasin for a short time, but switched to letrozole and added Ibrance a few weeks later. I've completed two cycles of Ibrance + letrozole.
So, my liver (and the rest of me) has been clear of active disease for about six months, according to the recent PET-CT. Liver enzymes and TMs in normal range. No palpable breast tumor.
My thoughts on why the taxol worked so well: It's quite possible that simply withdrawing the Tam helped. I have read a study that said Tam may be ineffective for a subset of ILCs and may even promote its growth. I think this was probably the case with me. Also, being put into menopause must have helped a lot, since ILC is usually very hormone-driven. I think the taxol also played a big part in the speed of my response. As I understand it, ILC is less likely to show complete pathologic response to chemo, but that doesn't mean no response at all. Also, ILC is often slow-growing grade 1, and chemo targets fast-growing cells. In my case, the ILC was grade 2, so maybe more susceptible. Finally, I did what I could to help the chemo with good nutrition, exercise, sleep, emotional support, etc. I followed the dietary advice for taxol on foodforbreastcancer.com. (I'd like to run these thoughts by my onc at some point.)
So for you, Woody, is this correct: in 2010 you had ILC grade 1 and 2, stage III, for which you had lumpectomy, radiation, and femara. Then in 2013/2014 ILC liver mets, now PR- and maybe Her2+, for which you had aromasin then added herceptin and perjeta. What are you on now? Have you had a taxane yet?
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thanks, Woodylb. Yes, I'm sure they will be treating the HER2 with the others. He listed four possible chemo drugs... taxotere, carbo, pertuzumab and herceptin. We will know Tues something about the liver, but supposedly if it comes out negative that isn't a sure take on it.
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thanks, Woodylb. Yes, I'm sure they will be treating the HER2 with the others. He listed four possible chemo drugs... taxotere, carbo, pertuzumab and herceptin. We will know Tues something about the liver, but supposedly if it comes out negative that isn't a sure take on it.
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OMG ShetlandPony, ILC is so confusing. I was dx with december 2010, jan 2011 stage ILC stage IIIB T0N3+M0 . Meaning mybreast tumor was very small less than 1cm but the lymph nodes status was very high including two axiallaries 21/23 grade 2. So i had lumpectomy, lymph nodes dossection and Axilliaries. Did ACT full cycles for four months .
Then i had radiotherapy and started Femara for three years . Then jan 2014 i was dxd with liver mets consistant with the primary tumor ER+PR-and HER2 equivoque meaning borderline. So it was sent for FISH Which came back negative.
I had a total of 10 tumors in my liver the largest 2.5 cm the rest minimal. So i was started on carboplatiin + gemzar for six cycles each which reduced my tumors by 20% . Then i got Aromasin during summer of 2014 for three months after which i had a PET which showed progression in the liver and unmber of tumors increased and also showed bone mets on the spine, right hip , lower back plenty of them. They sarted me on xeloda , and was told i was running out of options. Xeloda failed but during this time i had received the results for the genomic testing which stated that i am highly her2+ . So i was started taxolH/P after three months a PET showed complete disapearance of both liver and bone tumors.
They were totally gone nothing. No activity . Nothing. I did my PET a week ago still showing the same results . Tuesday will be my last taxol dose. My onc intends to strat me on tamoxifen along with herceptin Perjeta . And we will take it from there. . We will see . I also take xgeva for the bones. As i took pills for the bones , once monthly before.
My cancer is ILC but it seems to be behaving more like IDC the strange thing is that my mitotic rate is too slow.
It is really confusing so i will take it day by day. I told my onc about you , he said it is extremely rare for an ILC to respond completely like you did to chemo..
So i have to wait and see .
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What a wild ride, Woody. I think I have it now:
You had ILC IIIB T0N3+M0 in 2010/2011. Grade 1/2, typical ILC markers ER+, PR+, Her2- . (What does the + mean by N3?) Surgery, radiation, ACT chemo, femara.
2013 You had liver mets grade 2, ER+ PR- Her2 equivocal, later shown highly Her2+. Some reduction from carbo gemzar. Xeloda fail. Aromasin fail--progression and bone mets in only three months (wow). And then recently, Taxol HP got you a clear PET--no liver or bone mets! And now you are planning on HP and tamoxifen.
And how long have you been clear according to PET? Do you say it is behaving like IDC because of PR-? And by "too slow", are you saying that taxol worked despite low mitotic rate? Or that it is strange for Her2+ to have low mitotic rate? And there's no way to know how much of the good response is due to taxol vs. HP, right? Kind of like me with taxol vs. chemopause.
So we both had mets after three years, and we both had great response to taxol/taxol HP.
Thank you for sharing your story. I think it is so important for all of us here to learn what we can from each other. I'm going to start a new topic about Stage IV ILC today, but first I need to go do some family time.
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I'm still here. I read everyone's posts and inwardly celebrate or commiserate, depending upon the news. I try to remember to thank The Lord for each step of our journey. No matter what, there is a happy ending.
Monday being a holiday, my next appointment is on Tuesday. My bilirubin will determine whether or not I get chemo. I'm still jaundice, my eyes are yellow, and my urine is usually dark. The oncologist said this can be so even if the bilirubin comes down, so who knows what will happen. It is what it is.
I thank The Lord I was able to spend another beautiful day at the beach with good friends. Life is good.
Happy Memorial Day. Thank You, Lord, for those who've sacrificed for our freedoms.
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Penny,
We missed your posts and missed you. We thank the Lord for everyday we are here and for all the friends and loved one who surrounds us with their love and vigilence. I am waiting with impatience for your tests tomorrow and pray God that your billirubin is down so you can get your chemo. I hope jaundice will let down a little bit, as long as your liver is functioning i am happy .
I know this is asking too much but please post as soon as you get your results.
I am happy you enjoyed your day at the beach with your firneds and hope you spend many more.
Happy memorial day !
Love and prayers !
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Shetland,
N3+ means more than 3 lymph nodes it could mean a lot , and mine where too many. This was the downside of my cancer. Well sort of speaking, cancer is a downside as a whole.
My ILC is not behaving as a classic once from the begining in the meaning that it is supposed to be indolent , well it is not. Mitotic rate is low yet the spread is extensive. One of the onc i deal woth even suggested that it is probably IDC but me and my MO do not agree with her. If it was IDC it would have showed i have had 5 pathology reports whoch states otherwise. It would have showed . My PR disapeared the second way around , my doctor said it is normal for my age i am 56 now . What i meant it is acting like IDC is that it seems more aggressive than the traditional ILC.
My doctors do not believe my response is to taxol they believe it is the her2 targetted therapies because of my history with other chemos to whoch i had barely responded. They told me before starting this combo that if the response is 20% it would be the taxol and if it was 40 to 50% it would be the HER2 meds. They certainly did not expect the complete response from what i understood . Of course for them there is no way of proving this until i pass the 6 to 8 months wothout the taxol. Even though the response of T/H/P was best ever in cancer history in a manner of progression free period the complete response was only 30% , these results are not based on people with ILC since ILC is almost never Her2 +.
So this is new ground for them too. When i saw your post that you responded completely to taxol i got scared because what if mine also responded only to taxol also? So i contacted my onc who said according to my history with chemo he does not believe so, of course he cannot certify it , no one can. But he believes ot os a response to her2 meds. Our choice for tamoxifen is based on the fact that it is the only one i did not try, except for faslodex.
My ER + status has also change the second way around and gace dofferent results in two different labs. In one ot said i am 85% in the second one it says i am 60% . Still my doctors believe an anti hormonal is still a viable option in my treatment. Just to make sure we close faucets for her2 to sneak in.
The last scan which was almost 10 days ago showed no evidence of disease NED. This after six months of H/T/P.
So now after three months we will scan again and see.
It is a good idea to open an ILC thread for stage IV , there is already one but they are all under stage IV , there ILC on stage 4 forum but since each has a different treatment you may find them on different threads of the forum. I found only three or four like me who are ILC with HER2+ one i haven't heard from for a while and another who posts from time to time and who i believe created a thread for ILC her2+.
I stick around here more often because i am deep in liver mers and also because i made some friends and i love the ladies here. I skim all threads from time to time of course and read , sometimes i help and others i am helped.
BCO have been a great source of information support and kindness.
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Great to hear from you Penny and glad to hear you have gotten some time at the beach. There is nothing like the waves to calm me help me to relax. I'm sending out many prayers for good results tomorrow and that you will be able to have chemo. Thinking of you often...
Debbie
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Thinking of you Penny, today especially. Praying that you get treatment and that bilirubin is coming down.
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Just to let everyone know that I am around and have been reading. I have yet another UTI which has laid me low so haven't felt like writing much. All my energy has been devoted to trying to sort through my neighbor's plans to knock down their house and rebuild a new one with basement. Doesn't sound like much but they will be pile driving the supports for the basement about 6 ft from my bedroom. I will probably have to move out of my house for the summer but it is nearly impossible to get any more information from my neighbor. He sent me an email last week saying in which he stated there would be no vibration or excessive noise. Does he think I am stupid? Most of what I know I have gleaned from the local planning department and they are having problems with him, too.
On a brighter note, I saw my surgeon last week and he says I can drive again. Freedom!!
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spring
Glad you have wheels and are driving 🚙🚙. Hope the UTI improves.
Diana
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Returned from our farm town home & a very nice weekend w/family, friends & working in the yard. The cell coverage is wacky in the rolling wheat fields so I can write a long post...and it doesn't go thru. Other times, there's not problem so...I'm catching up.
Penny & pixie dust! I'm hoping today, Tuesday for us...finds your bilirubin behaving & maybe, possibly, having chemo. Am I right in thinking you may have cake & ice cream today???? God Speed!!!
For Woody...where it's already Wed...praise God it was your last taxol yesterday! Sent an extra thank you, Jesus, for helping you stay strong!
Nice post by your daughter, Chichi...sometimes it's hard to put into words what this journey means...those around us have a unique experience in living it with us & can put it into others' perspectives.
Sorry to not address all....watching Grandaughter & have to accomplish lots while she sleeps.
Spring....SO HAPPY YOU GOT WHEELS BACK!!!!
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No bilirubin results yet but I'm getting a lower dose of chemo. Should be out of here in an hour. NP can't believe I'm coherent. I believe in HIM.
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Yayyy for getting your chemo today, i hope the billirubin behaves for while and just all together go down. Prayers payers and prayers. Enjoy the cake
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Ronnie, good to know you are always as busy as ever and as active , god bless you and bless your family , keep at it , it is a great incentive
) missed you.Chichi, wonderful and loving daughter andnwho loves her mamma , you must be a very proud mother God bless you both.kisses.
Spring, i am thrilled you are able to drive , this should give you back a small part of your life . With God's speed.
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Penny, sending good wishes. Shock those doctors some more!
Also glad to hear about Springwatch driving, RonnieKay's time with family, Chichimaine's awesome daughter. It feels like each "little" victory or good time belongs to us all, as well as each sorrow.
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Woody, one of the first things my onc said to me about finding mets after only three years was, "ILC usually isn't this nasty." Yeah, taxol was my first chemo. With ILC that has changed to PR- and Her2+ you are in a subset of a subset. But being able to use the Her2 therapies is helpful. May I ask why you are using tamoxifen instead of faslodex?
I'm debating whether to start a Stage IV with ILC topic (in the Stage IV only section) vs. an ILC Stage IV topic (in the ILC section). I'm going to ask people what has worked or not worked for treatment, and maybe imaging. Do you have an opinion?
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ShetlandPony,
I have a whole genetic study of about 20 pages talking only about my specific kind of ILC . i read all of it , it contains all kind of genetic names and gene has a function with which a treatment works or does not work. Plus it's specific function. True i seem to have a very variated cancer in each cell. I was told the same thing by my onc when i was first dxd , that ILC is indolent and very slow growing. Well mine does not seem to fit this criteria it may be slow grwing but it seems to be diffuse. Being able to use her2+ therapies was not only helpful it was a life saving option. I was nor responding to any kind of chemo known. So even though her2 is very agressive , the option i got actually saved my life or i would have already moved to palliative.
The reson i am using tamoxifen instead of faslodex , is that there are no studies done on herceptin/perjeta and faslodex. There are some studies regarding femara and others and the recommandation is moderate. Since i got the maximum time with taxol plus maximum response , i have to go on hercept/perjeta alone and since i am still fairly ER+ my onc and I made a decision to take an anti hormonal to cover ER+ possibility for the cancer to soread through it. I have already taken femara and aromasin . One worked for three years and the second got me to bone mets. Arimidex is the same family as femara so we decided i would try tamoxifen, since before the aromatase inhibitors it was the drug of choice for all cancers and it worked. Meanwhile we will keep the PET scan every three months for a year if there is no progression , then we will start doing it every six months and so on. Faslodex by itself is very strong. I have been on very heavy chemo for a year. My body needs to rest and frnakly my doctors prefer me healhty and well rather than heavily medicated and in bed. As long as there is no need for it. I am satisfied with the decision and we will see how it worked three months from now.
As for opening a section for ILC stage IV advise you to open it in stage IV usually all stage IV topics are together and anyone who is not stage IV should not post in them. Frankly it may be depressing for those who are in a lesser stage and it may scare them or cinfuse them.
To tell you the truth and from what i understood from my doctors and the reading i have done. No one really knows much about ILC since it is not a very common cancer. Only 15% of all cancers are ILC in the last few years it became 20% and it started to get noticed. ILC usUally happen to women of age 50 and above except now younger women are getting it . So it was usually treated the same as IDC. it is only in the last two years that doctors started to think that maybe they should use a different strategies. Since treatments are becoming more indivualized for each person whether IDC or ILC. As you may have noticed each person with the same thoe of cnacer resoond differently to the same regimen. So even if you ask each persin what treatment they got , it may give you option but not a solution.
For example a lot of women and mainly ILC took xeloda and it worked for them, yet other s it did not do anything , me among them. The other one is chemo ILC is know not to respond to chemo fully like IDC due to its low mitotic rate and the nature of the cancer , yet you responded totally to taxol. While i didn't respond to three major chemos. This is why my doctors are not sure that it was tacol who got me to NED. This is why they will wait . I could go either in remission or reoccurrence , both possibilites are valid in my case. All i was told is that in the regimen i took and in the stage i was in and the intensive tumors in both my liver and spinal bones a complete response is only about 20%. As total remission is 10%. I do not know where i stand in all this but i can only hope and pray.
I do not go that deep anymore into this like i use to because it is very tiring and it prevents me from taking advantage of the time i am alive to actually live and enjoy it. But of course when a new decision have to be made , i would like to take part in it. If i feel it is right for me i do it and if i don't , i refuse it.
Lollll i am sure i lost you somewhere , but i hope this helped you. I also hope you get the right treamtent one with which you feel comfortable with and one which is able to stop your cancer or eliminate it. I pray for each and everyone of us to have a long and healthy life. God bless you.
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Hi - I wrote a whole post about 45 mins ago and I am not seeing it here - is there a way I can look it up so I don't have to rewrite it? Susie
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Hi Ladies, wow I've missed so much. Been a very bad week for me. Have had bad pain in the ribs, front, side and back. At least I think its the ribs. I took T#3 and one was not enough so had to take 2. They made me sick. MO faxed a script in for something to help the stomach. Still get some nausea. Thinking my tx is not working. Chemo next if the CT shows progression June 8.Then I lost my brother 2 days ago, so now I'm in pain 2 different ways. He was only 59 and so supportive and loving. Such a loss for me. Have to get through visitation and the funeral yet. Lord help me!
Cathy
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Cathy - keep us posted on your scan. Sorry about your pain. Really sorry about your brother. Soon your sweet memories of him will help you through the grief. Lean on The Lord.
Love, Penny
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lots of love and hugs to you Cathy.
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I had a CT on Tuesday. My oncologist called me tonight with results. I knew they weren't normal. She only calls when its something. Evidetly, there is a 1 cm something on the CT scan. She said that it could be vascular and due to the contrast or it could b something. I have to have a MRI next to look into it further. So now i wait for insurace approval and then have the next test. I hate waiting. I struggle because I was not yet recovered from the brain cancer scare I had back in February and the insuing surgery. I thought I might get a little break from the viscous cycle. I hesitate to say anthing to others around me because I don't want them to think of me as the person who cries wolf. They of course don't get the contstant stress we are under waiting for the other shoe to fall. How could they? I just don't want to be the person who needs help or is always sick in their eyes. Anyway, I am hopeful that it won't be anything. But those of you who have had to move on to new treatmets give me hope.
thanks for being here
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I feel a lot of pain for so many of you who are struggling right now. It is so horrible to never know for sure, or have drugs not work. sorry not to write individual notes.
I have had VERY good news. My liver biopsy came up negative. I was warned by the doc who did it that if it was negative that would not be conclusive because it was very difficult for him to get to, but my oncologist is quite happy and has declared me a not Stage IV (for the time being). He says we will know for sure if we see no changes in it over the next month, because he is finally starting chemo on me Wed. Wants to do chemo before surgery ... a bit of a new approach that seems to be working well for those who have tried it. I'm all for it, because I don't want them putting it off and then seeing the lesion in the liver grow. If, it is not cancer, or not a BC related cancer, because it is in only one spot, they can also remove it with surgery. So we will see after about a month of chemo. If it is reducing in size, that is both bad news and good news, since it means it is a liver met, but it also means it is responding to treatment.
I have to admit I am a bit scared about starting chemo. I will have 4 drugs (I'm also HER2 positive) 1x every 3 weeks for six sessions. That's about 4 months. Is that a typical time for chemo? More or less than normal? understanding that there probably isn't a real normal in all of this. Of course I'll lose my hair, but that's no big deal. Not losing my life is the real thing, but I do fear the nausea and some of the other symptoms. I am fairly overweight, but they are warning me not to continue to work at losing... (I was on steroids for 8 months and had gained 20 lb. and now have lost (on purpose) 5 of those 20). I am trying to eat healthy and avoid sugar and white starched... lots of protein. Any suggestions or comments?
What a difficult trip for everyone. So sorry, that so many of you are younger than me. I am 72.. and that you must do this at this time of your lives. I'm thinking of you.
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tryin2staycalm,
I am so sorry for your loss, it is hard to lose someone so close to you , specially a borther. May his soul rest in peace and may God give you strength to endure.,
I am also sorry for your physical pain And hope you soon get some relief, may God be with you.mlove and prayers.
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Leftfoot,
I am so sorry you are goong through the anguish if waiting, and i hope it is something but not cancer. If it is still try not to worry so much. I went through 4 chemos in one year until the last one worked some. O fail to see why you should not cry wolf when you are worried and struggling. Sometimes people tend to forget that we are fighting everyday for our loves, just because we look healthy.
I think it is ok to tell someone you trust and you like of your fear and of your disease. You should not be worried about how they feel but about how you feel. You have been through a lot this year and ot is within your right to vent about it.
Where did they see a 1cm ? Keep us informed about the MRI . Meanwhile, do not lose hope or give up until you know what is and how to deal with it. You know that many of us on this board are dealing woth different mets and yet still alove and kicking. I am not saying it is easy but it is doable.
I hope your mind is put at ease soon , my prayers are with you and i hope you give us some good news soon. ((HUGS)).
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Kcoralee,
I am glad you got some of the answers about the lesion on your liver. At least it is not confirmed. Do not worry about chemo or how many , our body has a way of dealing with it. We are always stringer than what we think. Each one of us is resilient in our own way.
Please do not feel bad because you are older , to each one and no matter how old or young we are , life is precious and we try to hang on to it as much as we can.
Chemos do have some side effects and it differs from one individual to another. But all side effect more or less have medication to lessen the effect. If you experience any side effects be sure to tell your doctor about it and get some meds for it.
I wish you good luck and good results on you new journey and pray you get the results your doc expect. God be with you.
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Hi everyone. I don't post often but I visit the site daily to check out how you are all keeping. I have just finished my second cycle of clinical trial and the tumours in my liver are still shrinking but to everyone's surprise it has actually eliminated the small lesions in my lungs too. My bones are stable. Unfortunately when they did the benchmark eye tests and scans, an abnormality was visible on the orbit of the eye. Second ct scan on the eye shows that it is a lesion and another two lesions have been seen on the other eye.oncologist seems to think they had been there for a while. Not picked up because we very rarely get our eyes tested as thoroughly .I have only another cycle to the end of trial. If we get good results at next scan I will be able to continue with the treatmenot until it stops working.I have had very few side effects. sore mouth and hair thinning, I can live with that.
Has anyone else had experience of eye lesions and if so what treatment did you have.
wishing you all pain free days.
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Thank you ladies for your kindness and support. Kcoralee - I think of chemo as a blessing right now and look forward to finding something to give me more time. I hope it does the same for you. I suppose it does depend on the chemo but my MO said they are not as harsh as the original chemo. Glad your biopsy was good news too.Good advice redwolf ty I am trying to do just that.
Leftfoot - Thank you and yes waiting is the worst! I'm waiting with you.
Woodylb - You are an amazing supporter of us ladies here. Let me say Thank you from all of us. It doesn't go unnoticed. Hugs to all.
Cathy
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Cathy, I am so sorry about your brother, especially as he has been so supportive. I hope your back and rib pain is nothing sinister.
Motherflush, sorry I have no experience of eye lesions. Have you tried doing a search?
kcoralee, Good news on your liver biopsy. They know the lesion is there and they will keep an eye on it now. Hopefully, it will stay unchanged.
leftfoot, I hope you get insurance approval soon to check your lesion. MRIs are much more sensitive than CT scans and should help to clear up exactly what it is.
My refrigerator/freezer packed up last night. Fortunately, the fridge was nearly empty as I was going shopping today but I have lost every thing in the freezer!
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Thank you Cathy for your kind words ! My heart goes out for each and everyone of us and i pray the lord to help all of us to go through this journey knowing we are not alone.
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Thank you all for your comments and support. Yesterday they put in my port and decided to also check out my sentinel node, since I didn't have the initial surgery that would have done it. My doc was so nice to do that. Sent to Orlando for the radioactive stuff they use to identify it before the surgery and stayed late to do both surgeries on me. I have the nicest doctors around... and they are good and smart. When you have that, you do go forward with more confidence.
My problem is I talk more and more, the more nervous I get, so wore out just about everyone, but I DO have some good stories, (since I've been around a long time and had an interesting life), so I think they enjoyed a few of them... LOL It helps me keep upbeat. So today I go back to painting and that keeps me upbeat too. Won't let me swim for a week, but I can walk in the pool. I try to focus on doing something positive or normal, kind of.
I appreciate most your comments on chemo. I'm sure I shouldn't be too worried... in my life I have suffered many of those symptoms for other things... and survived. I thought maybe if I imagined myself pregnant, that would help... LOL
I am so sorry to hear your struggles to keep those nasty cells down in so many parts of your body. Especially concerned about the eye ones mutherflush... hope they get to that quickly and stop it dead in its tracks. I'm thinking of all of you and just hoping you get some peace and tranquility on this trip.
One question... planning to stay at my daughters for a while with grandkids, girls 9 and 5... will I be up to it, do you think, being on chemo?
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Trying to catch up after a few days...I've been reading, but too tired at end of day to write.
Cathy - so sorry to hear about the loss of your brother. Sending prayers for peace for you and your family. Also praying for relief from your back and rib pain, hope it is a se instead of a symptom.
Kcoralee - great news on your biopsy! Woohoo!
Woodylb - Cathy is right, we rely on you for you knowledge and support, but mot of all for your loving spirit that comforts us all! Congrats, too on your last taxol!!!!!!!!
Motherflush - I know that there was someone posting on here at one point that had eye mets...I will try looking back a couple of months to see if I can find the name for you. Please let us know how you are doing.
Penny - Yay! Chemo for you!!! Who would have ever thought any of us would be cheering for gettting chemo??! lol! Praying the the Lord continues to hold you up!
springwatch - Yahoo on being able to drive!!! I hate when that freedom is taken away even for a few days. Sorry about your freezer...never a dull moment, huh?
I know I've missed lots of you, ladies, and I apologize. But, here's to a great weekend for all of us!!!
Debbie
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Thanks, Chichimaine. Hope your energy improves. I'm already evening very tired. Can't imagine how it will be on chemo. Not worried though, thanks to the support of all of you. Love, Coralee
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Kcoralee - you will do fine!!! Rest whenever possible, drink lots of water and most, important...spend time and laugh with friends and family!!! Makes a big difference!
Mutherflush - I found someone on All About Xeloda who has eye mets. SusaninSF. You can check out her posts on that board or send her a private message. Hope i'ts helpful!
Debbie
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thinking of you all...have hardly been able to catch up...too much going on, but good family stuff. I will read tonight after wedding reception. Love & prayers.
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Hi, I usually don't post , But was wondering if anyone has had experience with taxotere, I think it is called, i will be starting next week I am afraid after flunking Ibrance/femera. Why do I feel like a failure when a treatment quits or does not work.
Would appreciate anything you can share about Taxotere, side affects, and how you felt on it.
Thanks Redroan
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three years ago I was diagnosed with er+pr+ breast ca had chemo radiation and bil mastectomy. A year and half ago liver mets. Two spots surgically removed and the other livers ablation. Have been on faslodex ever since. With normal pet scans. Tumor markers have been raising but still normal pet scan and mri's. Thank you Jesus. Anyone else ever had high tumor markers with no evidence of cancer radiograpicly.
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chichimaine, thanks so much for the encouragement. I get nervous about most things for a day or so and then adapt. I'm sure I will with this too. They just did surgery on me yesterday... put in a port and took out a sentinel node to have a base idea about my lymphnodes before the chemo, since I am doing chem before breast surgery. It is a backward approach but sounds like in my case... with possible liver met it's a great way to go. the lymphnode surgery was last minute, but I'm glad they thought to do it. My doc had to push a lot of people to make it happen at the last minute, but he succeeded. I'm very appreciative. I have a friend going with me to my first chemo and although I didn't think I needed it, now I know I'll be grateful. It's supposed to be at least 6 hours. Anyway, it's all coming together, which I'm very thankful for. We'll see how this goes.
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Chichi,
I hope you feel less tired soon. Chemo will do that for all of us. Get som rest when you need to it will give more energy, don't try to do many thinks and push youself when you are tired. Thank you for your kind words. You are all like family to me. So whatever i write comes out of love. Wishing you all a nice weekend and brand new week full of energy and positive thoughts. Xoxoxox
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Kcoralee,
Wishing you a speedy recovery and god results from your nodes and good luck on your chemo. God be with you
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Redroan,
I had taxotere and i think many of here did. It is a strong chemo , but very effective on cancer cells. Hopefully it will work for you. It is not very different from others , it is cumulative, hair loss, water retention, weight gain and or/ weight loss, but most of the time people gain some weight, peripheral neuropathy, you may feel some tingling in the toes and fingers, nausea, feeling tired. But please remember each person reacts differently , s side effects may vary fron one person to another. For me it was ok until the last few cycles. I got tired and put on a lot of weight. But my doctor from the begining told me not to worry about the weight , that i will lose it once the treatment is over.
He preferred weight gain rather than loss. Keep you strength, and rest when needed. Good luck to you.
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Pop3,
I hope your scans continue to show nothing. Scans do not always pick up progressions simply because the cells are too small to show. Tumor markers rise for many reasons it could mean progression and sometimes not. It depends if yours are dependable. Mine are not an indocation. It is your onc job to worry about this not you, if he has doubts he should check further.mit could be the meds . I hope it is just a reaction to fasldex. May God bless you and be with you.
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Redroan- I also did Taxotere . It was easier than FEC by far. However I was one of the rather rare ones who got bone pain as a s/e. Hate to scare you but being honest, just keep in mind it is NOT the norm. It is quite normal though to have a slight tin taste (like a tin can) when you eat or drink. I took my meds for s/e (forget them all now) but it didn't make sick like some did. Good luck with it!Cathy
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Thanks so much.
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Woodylb and Cathy, Thanks for the information. I always get anxious when starting new chemo as my first was Adriamyacin and I was so sick for a the first week. I was ready to quit after that. But they gave me better meds and it was better,
How soon did you loose your hair? I know that is pretty vane but I like having my hair back and really don't want to loose it again. But I will to beat the beast down for a bit.
Its good to hear something fairly positive, I have had a poor me weekend! I try not to do that but we have had a bit of bad luck lately and when it rains it pours. Then tumor markers were elevated and change chemo and then basement flooded and was still trying to get over the last few weeks. We had electrical damage from a tornado that went through town, (we were lucky it didn't hit us) Then faucet broke in the bathroom, Truck has issues , I was just feeling a little frustrated, Sorry don't mean to vent so much.
Thanks again. I have lab in the am and will see when I start.
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Redroan,
The first time on Docetaxel and Adrimaycin/cytoxin i lost fairly soon after i startedin a 10days time. On carboplatin gradually. Now on taxol which is a taxotere it went gradually but till now i still have some of it , it has mainly thinned a lot but not lost totally. I do not know if it has to do with fact that i am getting herceptin/perjeta along with it. I know it is a good feeling to lose your hair uear in and year out. But if it works on the cancer then it is worth it.
I am so sorry for your bad luck this past week and the worst of them is the TM rising. The rest well you know there are always days in a year where you feel everything goes wrong at the same time. I think it is a cycle in one's life. We all were in the same situation one time or another. It sure does not help when your health is at stake but try not to let it effect your state of mind. For you to go yet through another treatment will take its tall on you and you need to preserve energy and a strong state of mind.
I hope things will look up from now on and you get into a routine in which you can manage your time and your life.
I want to wish you a smooth sail for the chemo, hoping it will bring your TMs down and kill the beast. If you are having a blood test, i assume you will be soon starting. With God's speed and a healing touch.
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Met with oncologist today. MRI of liver tomorrow to confirm new met or not. CT last week was inconclusive. Good news is my heart has recovered enough that all Perception/perjecta/taxotere, TDMI meds are back in play if I need them. Will see her on Thursday if the MRI results are bad.I am trying to stay optimistic.
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Leftfoot,
The results may come back inconclusive again, the same thing happened to me about the bones , they were mets but inactive. I hope your results are what you hope for. Good news though about your heart, yayyy. The options which amy open are not bad. I hope you won't need them . God be with you. Keep us updated.
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Hope you get nothing but good news. Glad about the heart.
I have my first chemo, Wednesday, I'm both scared and cant wait. I really need to get started... NOW... They put in the port Friday and took out the sentinel node at the same time... I'm a little bummed out, probably from being under, don't know, but cry easily, which I wasn't doing before. They did find 2 encapsulated cancer cells in the node, but hadn't taken any others out, so don't know how far they went. I'm trying really hard to be upbeat, but am finally showing a bit of emotion. Maybe I'll be better tomorrow, but certainly, in spite of my fear of chemo, I'll certainly be better to have started finally... It's been a month since diagnosis and for a grade 3 I think that is long enough, don't you?
Love and courage to all of you, fellow travellers.
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Start taxotere on Thursday, Have to travel 2 hours for first treatment as local hospital won't administer first dose, After this one I can have it at home town. So that will be great. I am hopeful this works and side effects are minimal.
Thanks for all your info and well wishes. I am trying to get out of my funk and looking up!
Redroan
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Redroan... good luck on starting your treatments of taxotere. HOpe it goes well for you and does the job. I begin the same thing on Wed. Here are my other drugs.. perjeta, herceptin, carboplatin. I will have these 1x every 3 weeks for 6x. Then perjecta will continue for a year. I have no clue of course, about any of them, except I've been led to expect that none of it will be much fun... LOL Actually, they've given me material to read on each of them. And it all sounds the same to me... They are treating me before and after and during (3 days) with dexamethasone for nausea I think and have given me 2 other drugs to take for nausea.
My treatment ... starting with chemo, instead of surgery, is called neoadjuvent and they say is having some success. I hope they are right. Any feedback is welcome. Thanks.
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I just got my scan results from my first-line treatment after my fourth dose of taxotere/carboplatin/herceptin/perjeta and they saw a 75% reduction in the lesion on my liver (the only sign of cancer now left). I know I should be happy with that result but it means I'll have to keep going on chemo until it's gone and the chemo is really wearing me down. Did anyone else have a similar first-line result? Do you just keep going until it's gone or stays stable? And then what? My doctor doesn't recommend any local treatment of the liver but I'm pushing for radiation or a liver resection. It's just hard to keep going on the chemo with no definitive end to it.
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kcoralee, I am glad to hear from someone starting at about the same time as I am. I am only gonna be on the taxotere I beleive along with the 3 days of Dex and nausea meds and neupagen I think the day after. I hope we both do well with good results and limited side affects.
I have been reading too about the taxatere, but sometime feel I am overwhelmed and consumed with it. I try not to obsess about it to much .
Hope we can keep in touch.
Redroan
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Josalive,
Wonderful results for four months only . You should be thrilled. However, i am a bit confused why was carboplatin added to the regimen. The regimen is usually only taxotere /herceptin/perjeta. Every 21 days for six months or reduced weekly taxol with every 21 days herceptin perjeta. Some people continue for a year. This regimen is very doable and not so bad and the quality of life is good. I did carboplatin before this one , it wore me down completely because of the effects it has on the red blood cells and general fatigue. It wore me down with very little effect , only 20% shrinkage on the liver.
Taxol/herceptin/ perjeta after three months gave me complete response. And my second scan just before i stopped taxol gave me no evidence of active disease. My last taxol was last week . Now i will start tamoxifen along with herceptin /perjeta wvery three weeks, and see what happens.
If you are ER- your doctor may continue this regimen for a year or stopit due to toxicity. But to my knowledge carboplatin cannot be given for more than8 cycles max. You could ask him to drop it completely and continue till the end of six months with taxol/herceptin perjeta and see what happens.
As for invasive procedures i happen to agree with your doctor. Liver mets are very rarely candidate for such procedures. While a procedure may make a tumor disappear amd you feel well for a while another one will pop out , plus the procedures tire the liver eventually. So think about it carfeully before you push for it more.
Stage four has no time table you are always on medicarions and it depends on progressions. Taxol/herceptin/perjeta has the longest progression free periods in the history of Her2+ cancers when the body responds to it.
I understand how run down you are but i am fairly sure it is the carboplatin side effects not the rest.
Meanwhile, if you continue to six months , i hope you get complete response , this way they can give some rest from chemo for a while.
I am very happy for your results and i hope it reduces to nil. God be with you and guide you to make the right decision.
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Redroan ans Kcoralee,
Good Luck of your taxotere regimen , i hope it will be easy on you and tough on the cancer cheer up, it is not so bad.
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Josalive, I did Taxotere + H+P for 6 rounds last year and then H+P indefinitely. With each chemo my extensive liver tumors shrank and markers went down. By the end of 4 they were about where yours is and by the end of 6 Taxotere infusions my tumor markers were way down in the normal range and liver mets were small and blackish (dying). Sure enough 2 mos later PET scans showed no activity--NED!!!.
Before the end I asked about more chemo but then got the quality of life and robust immune system speech plus my tumor markers seemed to be a good indicator and my Onc really thinks 6 rounds of Taxotere plus the monoclonals is usually sufficient. The last 2 rounds of Taxotere kicked me hard. Took months to recover.
My onc is big on quality of life and not poisoning the patient unnecessarily. The research shows adding carboplatin doesn't improve results (Cleopatra study I believe). She does what she can according to the latest research and asks her patients to do what they can (eat right, stay active, reduce stress). I'm still NED and am just finishing a vaccine trial and keeping my fingers crossed for more time. I feel pretty good one year out from hard chemo (like being condemned to months of hard labor).
You may want to ask about stopping the carboplatin?
Hang in there, your tumor is responding appropriately it sound like (heeeeelp, I'm dying!!!)
Michele
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I haven't posted in quite awhile but today I have great news: AA combo seems to be working on the liver mets! Last scan in February showed improvement but on this last one there is significant necrosis to the tumors. My TMs though are still rising...onc says when tumors are attacked they get angry and cause markers to rise-anyone have this happen to them? She is all about the scans so I don't go back till September! Also, has anyone actually felt the liver doing something? I swear I can feel a pulling and tightening on my right side...onc gave me one of those looks...you know the look!
Please celebrate in spirit with me today-I pray all of us get to have some awesome happy news!
Cisco711
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Cisco,
Wonderful news! Fantastic, i am happy for you and for each one of us who gets any good news. This is good news.
I heard that when tumors die in some cases they cause the tumor markers to go up but i am not sure of the accuracy of it all. But i do know sometimes they do rise for other reasons then progression. In all cases believe if it was worrisome your onc would have investigated further. Mine rose 4 points after i got results on my scan of no evidence of active disease.
As for feeling something in the liver , i feel a bit of pain after each session , i also have discomfort on the right side upwards. But nothing shows on the PET.
Again congrats on the wonderful news, i am celebrating with you in spirit and prayers for us all.
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redroan... thanks for your quick response... Yes, let's stay in touch. My doc is throwing the kitchen sink at me, but I have a lot of confidence in him. Let's hope I can handle it. I just read Woodylb about the Carbo and will ask my doc about it... But I'll start with what he says and see what happens. The real trick will be whether or not the liver met receds. For me... if it does... that is not good news, because at this moment it is a possibility that it is not my BC and that will be the evidence that it is, if it responds. Ironic isn't it, to be hoping it doesn't reduce in size. Because if it is not BC it is either another cancer or nothing important. If it is another cancer, it can probably be removed. IT is the only one there. I'll let you know how it goes tomorrow. My friend is taking me and we are fortifying with books, food, blanket, socks, games, cards, etc. etc. Party time... Let me know how yours goes. Yes, I'm scared, but trying to make it tolerable.. I think it will be. Sorry you have to go so far for yours. Hope it works like magic. Remember, every day, every year, they develop more magic for us. And those of our sisters who have made it through 10 and 12 years didn't have anywhere near as many options as we have, starting later. But I guess you started a while ago didn't you. Still... remember... they are still really working on a cure. That's for us too... Love to you.
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To anyone who has experience with lymph nodes: They did take out the sentinel node Friday and there were two small encapsulated cancer cells... Anyone know what that means... Did it get away yet, or are they still thinking about going.... just a guess will do... won't hold you to it... LOL
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About the feelings in your livers. I had an infected liver in 1961 along with mono and was in the hospital for a month. What I felt, was a lot of pressure high under the ribs and sometimes my back. That was with a VERY sick liver, but also when they did my liver biopsy last week, I had a similar feeling under the ribs... not so terrible really. I wouldn't be surprised if you feel something... bet your docs never had liver cancer or treatment... LOL... So I think it is possible to feel something, but just a thought. I would think it would be good not bad., just means something is working on it. I know also when my husband had a brain tumor... he sometimes had swelling around the area where the cells were having neprosy... which gave him symptoms even though the cancer cells were dying. Hope it is all a positive thing for you both.
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kcoralee, Good luck tomorrow with chemo, I will be thinking of you as I am starting my dex tomorrow aslo. Tx on Thursday for me. Very anxious Hope to get some sleep tonight as light night was minimal. I will sleep better after this first dose is over.
Good luck again tomorrow, Let the taxatere kill those buggers!
Redroan
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Thanks Redroan, my dex is making me fly today... talking all the time, hyping really. I entertained Chris, the technician with crazy stories (all the stories of my past are fairly crazy, but interesting), then went to IHOP alone and shared my treatments with all there (fortunately at 3pm very quiet) and everyone loved me wildly, I think... LOL... So be prepared. At least I went from crying a little yesterday and fairly sad to super duper upbeat... I love these roller coaster rides. Suppose there will be a lot more here on. I don't mind the upbeat ones, but they must drive everyone else crazy. Get a GOOD sleep tonight... And do what i did today... all kinds of rewards, some shopping at thrift shop, a massage, a walk in the water (couldn't swim cause of healing surgery), a meal out, all good, all fun. And I feel great. Think now and enjoy whatever moment is good. Yes, I do have a husband, but he has asperger syndrome and right now is working REALLY hard on trying to be empathetic... really he is trying, but you can't imagine how hard that is for him... so I try to have my fun time ... usually alone, any way I can. He's nice, don't get me wrong and we do do things together, but he's usually not easy. Right now, though, he's being super nice. He doesn't want me to suffer and wants me to get well...
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Kcoralee, I loved reading your post. I am glad you made lemonade out of your chemo-lemon day! That must be tough with your husband and the empathy. Sounds like a good strategy to do some of those fun things on your own!
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To those of you about to start chemo, I wish you all the very best and hope that your treatment is effective in dealing with you mets.
KCoralee, I am a bit surprised that your onc has included carboplatin as a first line treatment for your liver mets. You are triple positive according to your bio and I would have thought he would have gone for a hormone therapy and targeted treatments for your HER2 + disease.
Carboplatin is a harsh chemo especially on the bone marrow. My Hb levels have been very low on this chemo. Much lower than when I was on taxol. Someone above mentioned that about restricting carboplatin to 8 cycles. I am about to start my 9th cycle tomorrow and will carry on with it as long as it is effective. There is a lady who occasionally posts who did carboplatin for over a year but did have to reduce the dose over time.
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Spring,
It was me who posted about max of 8 cycles of carbo. My onc said ot is not advisable. In all cases for me on the 4th one i wad completely anemic and my platelets level were at 10,000 which dangerously low, so they had to refuce and space the last two. The total was 6 cycles. It really depends on the individual 's body and how it reacts to the med. i hated this protocol it was the worst, plus after it i got an extensive progression.
I am glad you are doing well on it and i hope it continues to be beneficial to you.
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Kcoralee,
I loved your post ! Way to go and the best way to deal with the situation, keep it up and you will beat the beast lollll
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I made 8 cycles of carbo. My onc didn't want me to do more - she said it is too toxic. And now I'm only on Navelbin. I'm not BRCA 1& 2 positive and thought carbo will be very effective - wasn't meant to be - it just stopped the progression for a while.
Kcoralee, wish you luck with the new combo.
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Just spoke with my oncologist- MRI results are inconclusive. Now I have to try and get insurance approval for PET scan, which is what I told them to do in the first place. Now my insurance company is giong to have to pay for 3 procedures (CT, MRI and PET scan ) all to look at this one spot. Crazy. Am holding on to a thread that this is not my cancer again. It is highly vascular and doesn't follow normal met findings. Of course the same can be said for the non cancerous options. Unfortunately, it is not in a good spot to biosy as it is surrounded by blood vessels according to my oncologist. so now I wait for approval and then the scan. it continues.
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leftfootforward, I know it is hard to wait for the scans and the results.....We are here for you. Good luck!
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kcoralee,
I am anxiously awaiting to see how it went for you today. My turn tomorrow, Leaving home at 10 will have lunch and pick up a few things. You sound like so much fun .!
My 83 yr old mother is going so always enjoy being with her. I want to get my toes manicured but don't know if I will get that done.
Hope you are doing well.
Redroan
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Leftfoot,
I am sorry yu are going through this , it is nerve wrecking , i know i went through the same thing too. My cancer is vascualr as well mostly. Waiting is the worse specially when you are dealing woth insurances. Evne though most doctors know that MRIs and even bone scans cannot confirm bone mets, it confirm abnormalities but not the cancer itself. Even bone biopsies are very hard and paiful and most of the time they do not hit the exact spot.
I hope you get the answer soon from your insurance and get it over with. Then we will wait woth you for the results
. Lots of prayers keep us posted. -
I feel very sad today. In the infusion room there was a very sick man. His mother was with him and she looked desperate and sad. I don't want to describe more but I can't stop crying since then.
I hate this stupid disease!
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I really get it, Kiss. The infusion room can be a very sad place sometimes. [[[hugs]]]
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Christina,
I am so sorry you had to see this. It is very hard to look at a person and realise there is nothing you can do for them except be there. I pray the man gets better and for the mother to be able to endure this journey with him. Your scan is soon right ? The 8th? ((HUGS))
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sandilee, Woody, thank you. I don't know why this hit me so hard.
Woody - on 15th.Maybe this is the reason I'm so vulnerable now. If there is a progression I'll be on Xeloda and continue on Navelbin. I started to read Xeloda thread - just to be prepared for the worst. I hope for the best though. Hugs for you wonderful Ladies.Thank you!
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Kiss, we can hold hands while we wait - my scan is on the 15th also.
Leah
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Leah, good to hear from you. I wish you and Kiss good luck for you scans i hope Nevalbine did a good job on regressing . Prayers to the both of you .
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Kiss- I have been on Xeloda for almost 3 years. I am currently praying that I can stay on Xeloda and not have to move on to another drug. It has had its share of SE but they are managable. I often think of it as taking a vitamin rather than cancer meds. So if you have to move on to Xeloda, I hope it treats you as well as it has me.
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Leah, I'll pray for both of us for good results. Hang in there, sister!
Leftfood, thanks for the wishes. -
long overdue update... been on break from the boards since mid-November (wasn't intentional, just kinda happened)....
after a clear PET in October 2014, I went forward with bi-mx, alnd, expanders, and radiation (finished mid-Feb) all went smoothly. I remain on maintenance herceptin & perjeta.
had PET April 2015 that came out indeterminate. they'd expected surgical & radiation sites to show up "wonky," but a part of liver very unexpectedly lit-up, too. report said it could be interference from intestine activity or possibly suspicious for metastasis. basically 50/50 odds. due to expanders I couldn't get MRI to rule out progression as would usually be the case - tried US w/o success & tumor markers aren't disease indicators for me.
so, they moved up implant/expander swap date and I'll get the abdomen MRI a couple of days later - should be around the third week of June. really would have preferred it happen earlier but scheduling didn't work out. it's not been the most fun waiting period but decided I was on-board with this plan and have been trying to have fun and stay healthy. been doing pretty well at it, too.
irritating point future folks may benefit from: before surgery I asked plastics about MRI-compatible expanders (they do exist) - I didn't get them (although fwiw, they had planned to go direct to implant, so perhaps not as prepared as they should have been). I realize a tiny tiny population gets these kinds of procedures at stage IV, but am disappointed it was not fully considered. liver surgeon had advised liver MRIs every 3 months to keep a close watch on liver (so much for collaboration). can't bitch too much though - all procedures did go smoothly and things may yet prove to be fine. note to others: try to insist on MRI-compatible expanders - you know, just-in-case.
I caught-up on 25+ pages of posts in this thread (and promptly forgot most of it - chemobrain -sorry) and while I realize there was mixed news, I am so happy to read so many positive posts and so so many with such inspiring good reports! it's truly incredible how much support can be found here - congrats to you all for creating such a warm, positive environment. I consider myself still new to this and am grateful to you for sharing your experiences. I'm sorry if it had to be so, but it helps to know that many who are now doing well have had some ups and downs along the way.
hoping to report back in a couple of weeks with all good news.
tgif and best wishes for a lovely weekend!
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hi people
Been out of the loop for awhile;traveled to Minnespolis for nephews HS graduation. Haven't had chemo for 4 and half weeks. Gained 8 pounds. Lol. I was thinking I feel so much better then I have for 11 months. Briefly I thought about stopping chemo. Then changed my mind. Last year I was too sick to travel with kidney failure but chemo saved my kidneys. My sister said "please don't stop chemo" and I told her I would not. I want to live. Praying Lxempra will knock out liver mets. (2)
My next Lxempra is Monday. Had blood work yesterday and kidneys are still good and liver function normal. I see oncologist chemo day on Monday. Apparently I also have a lesion on dura in my head. Will be interesting to see what she says. I feel pretty good right now. They weren't sure if dura lesion was beign or cAncer. Last scsn supposed to help define it. I will get the scoop from onc Monday
Hoping those with scans coming up get good news. Glad penny is responding and bilirubin is coming down. Pretty power tx out there. Have a good weekend.
DianA
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Hi Diana,
So good to hear that your liver and kidney function test are still good despite the 4.5 weeks off chemo. I will keep my fingers crossed that your dural lesion isn't sinister.
It sounds like you had a good time at your nephew's graduation,too. Especially if you put on 8 lbs!
I know what you mean about not returning to the chemo. I felt the same after I had my 5 week break for my operation. I was in pain from the surgery but I felt nearly normal in other respects.
Waves to everyone else.
Spring
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spicypetunia- did you have a liver procedure that you have a liver surgeon for? I am sorry, as I can't keep up with everyone's individual treatment. I am just curious as I may have a single liver met and was looking for options other than changing my overall medicine.
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Well Hello Ladies..been a while...I read daily but my willing to type is useless...I have been on Halaven now for 5 to 6 treatments..each and every one of them have been hard...with fevers up to 103.2 and nausea and vomiting for 3 to 5 days after treatment...this last one on Tuesday OC dropped the dose down to 20...and it stilled ran me a muck...fever/sweats where I woke up soaked to the bones..at 3am shower and stripping the bed...I have out of town guest for the last 2 weeks and I have only been able to enjoy a day with them...other wise I was in bed...UGH...I have lost more weight 15 lbs...I just can't seem to eat ....I literaly force myself to eat but later just "up" it comes for at least the 4-5 days after treatment and I keep up on my Zofran/Lorazapam too...Since April 2014 till now I have lost 85 lbs...I am so tired...fighting to gain weight...
I need to get stronger going on a trip to Oregon end of this mth...a gift from the Adult Wish Foundation here in Idaho. My OC and others from my clinic, nominated me for this and I got my wish granted..I really want to go to the ocean and my son is coming with me...I just feel like this might be my last time to travel like this for a while...I really need to regain my strength back and about 20 lbs back...Other wise I have been OK...just fighting this Halvalen SE is taking it's toll..
Again..I know I don't keep up with you all individually ...but listen I read everyday...and today...I got these figures typing cuz I need encouragement or some wisdom and ideas to help me with this journey...I look like a scare crow...just saying...
I love and miss you all...I am just trying to keep my faith and hope up at this time...Keep writing your experiences with this treatment...I hope I will gain more hope from it all
Peace and Love Carla
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Oh Carla I'm so sorry you're having such a hard time.
I don't have any suggestions for you but want to send love.
Leah
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Carla- Hugs to you. You will love the Oregon Coast. I know you have tried the big guns when it comes to anti nausea meds but have you tried the scolpalamine patch? I foudn that having this behind my ear the day before my treatment and then for the next 3 days really helped me with my nausea while on A/C. I put it on the day before treatment or the night before so that I had some in my system before the chemo was given.
hope you start feeling better and gain some strength for your trip
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Hello, Freebird. Wow, it sounds so hard for you right now. I hope you can get some new ideas on eating and keeping nausea away. I hope the ocean will send cool and powerful healing to you.
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leftfoot - no apologies - I can't keep everyone's particulars straight, either.
Requested a liver consult around time of dx - onc wouldn't refer me until I'd achieved complete response. Ended up at a different facility for surgery & new onc referred me - no problem. Liver surgeon coordinated with interventional radiology & mo & recommended a fiducial be placed to mark the last remaining liver met & 3-month MRIs to monitor -Mayo Clinic. Heard good things about liver docs at UCSF & other facilities, too. It wasn't as difficult as I thought it'd be & felt good to get a liver specialist's perspective.
Freebird - sounds like you are really having a rough time. Last thing I usually want is another doc appointment, but have you tried a palliative care/symptom management doc? They can have some creative, cool tricks up their sleeves and are great resources, especially when the other docs are outta ideas.....
Your trip to the ocean sounds incredible - I love how it came about & who you're going with. Thanks for sharing - it's wonderful to hear about. You sound like a pretty tough cookie - I'm betting you'll get things in better shape & be back to looking forward to that trip with nothing but joy & excitement. Fingers crossed for an easy fix & that you start feeling better & recoveringimmediately!
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Carla, I'm sorry you are having a hard time. But remember - Halaven kicks cancer's ass. You can do it. Why don't you try a protein drink - the one used by athletes. Maybe it will be easier to digest. Hope you start feeling better. Keep us posted.
Christina
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Carla...so sorry to hear you are having such a horrible time with the nausea. My daughter (29) who unfortunately also had breast cancer found the only thing that worked at all for her was marinol. The Zofran wasn't doing it. I'm not advocating smoking marijuana, but you can legally be prescribed marinol in pill form and it was the only thing that gave her half a chance to eat and keep it down. It doesn't get you high (darn it! lol!), but it certainly tames the nausea. Worth a try to ask your onc.
Hope you're feeling better soon and can enjoy your trip!
Debbie
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CT scan showed lots of progression and another lesion on my liver. Bone mets are very painful now so taking Hydromorh Contin slow release 12 hour 2x daily and for break through pain Hyromorphone fast release.
On top of the progression they found a blood clot close to my heart so had to see a Clot specialist and now taking daily injections of Fragmen.
I also started on chemo yesterday. Taxol weekly.
Cathy
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Cathy,
Prayers going up for you regarding not only your progression, but your pain. I will keep your girls in my prayers also as I know that this is painful for them, too. The Taxol should kick some cancer butt, but be sure to take care of yourself as it kicks our butts, too! This journey many say is a roller coaster ride, but it sounds like you've had too many downhill swoops...time for a nice long ride uphill to some easier days for you. Keep us posted...thinking of you!!
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Cathy, sorry for progression. As chichimaine wrote - Taxol will kick cancer's butt. Hang in!
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Tryin...in my prayers...they found that clot for a reason, I believe! You're meant to be here & as tough a go as it is, taxol may, as Chichi & Kiss say, kick some serious butt!
Carla...you've been through so much...I just wish we could all meet you on the OR coast to play in pixie dust :-)
Love to all! Leftfoot...I'm worried about that single met...hmmmmm. Hope you find the info you need.
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Ronnie- Pet scan was thursday and I haven't heard from my oncologist. Not good as I have a appointment scheduled to talk with her on monday. I am assuming that she is waiting to discuss where we go from here now. Still hopeful but am getting ready to discuss my options. I will let you know when I hear. thanks for the thoughts.
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Cathy , so sorry for your progression and specially your pain. Do not worry about the clotbnear the heart meds will take care of it and i hope it will be resolved quickly. Like Chichi said , Taxol is a tough chemo it should hold your cancer at bay. Take care of yourself and keep us posted. Prayers and hugs.
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Cathy, I hope you are feeling better fast. Taxol is good.
Leftfootforward, I'm sorry you have to wait the whole weekend to talk to your onc. Maybe she was just super busy on Friday.
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Leftfoot...I know xeloda's been so tolerable for you & will hope for "no news" on Monday...but Navelbine kicked my liver mets & was also tolerable...so just a little insurance policy!
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Leftfoot, I'm finding Navelbine easier to tolerate than Xeloda. My TMs are way down on it and my pain is almost completely gone. So it that's in your future it could be a good thing.
PET/CT tomorrow, so I'll see if it reflects what seems like good results.
Leah
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Leftfoot - I, too, have had good results from Navelbine - liver mets are no longer visible on CT - and the SE's not so nearly those of Xeloda. Hoping there's not need for a change for you, but like RonnieKay says, a little insurance is always good! P.S. - I've always had scans on Friday and had to wait until Monday...makes for a long weekend...hang in there!
Leah - Prayers for good results on scan tomorrow!!
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Has anyone who has taken Xeloda noticed feeling depressed when going off of it for the 7 days? I was off it as of yesterday and today I am not in a good state of mind.
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mommarch - Xeloda and I were not good friends - I was depressed the entire time taking it - 10 months - it has failed and I have now been off for two weeks and depression has completely lifted, also fatigue and pain in hip and thigh - but we are all different - and don't know how many cycles you have done. I am ready to start Navelbine next week. It could also be dose related but a change in dose did not help me with side effects. Also, sometimes there are adjustment periods on new drugs but I would definitely run it by your oncologist. Hoping you feel better soon. Susie
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Leah and Kiss77 prayers and good luck for today keep us posted.
Leftfoot , i hope you hear good news today , prayers.
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Thanks Woody!
Today was my scan but I had no courage to take the results. Will take them tomorrow morning. I want to buy myself some peace of mind for one more night pretending there is nothing. And my onc will change (if needed) my medication next week, so I can afford one more calm night.
Leah, good luck!
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Thanks for the good wishes! The results should be ready by the end of this week or the beginning of next week.
Leah
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So it is confirmed that it is a liver met. So after 2 1/2 years of NED I have recurred. good news is there is only one liver met and everything else is either too small or not there on PET scan. So plan is to get in to see the liver specialists to discuss if they can target it individually. I wil also talk with my radiation oncologist who did gamma knife for my briam mets. they might just do that. The met looks very vacuslar so they ight not not to surgically do anything with it, even to put in implants. We will wait to see what they have to say. If it takes too long to see them, my oncologist will start a weekly herceptin treatment for me as a stop gap. Most likely I will be starting taxol/herceptin/perjeta. So no more Xeloda for me. I am to remain on the Xeloda and Tykerb until we finalize a plan. I will get a port put in if/when it is decided to do the infusion chemo. So, not the best of days, but not the worst of days. Only one tumor that is amost too small to detect. I will take that as a victory. Plus I have options. so Wack a mole round 3 here I come.
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Leftfoot,
I am sorry you are facing mets yet again. But like you said it is not so bad it could have been worse. I hope your doctors find the right way to take care of it . My prayers are with you and hope you go NED again. ((HUGS))
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Kiss 77 any news ?
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Progression. To the bones. F..! -
Christina , i too after the liver had progression to the bones an extensive one , and they disappeared. Bones are treatable . Take a deep breath and talk to your oncologist so he can treat you properly. I am not saying it is not upsetting but it is treatable. Keep me posted on what your onc will say. Kisses
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Woody, hugs! I'll keep you posted. The meeting with the onc is next Thursday. -
Sorry, Kiss77, about the progression. Mine went the other way, from bones to liver. Bones have been stable for four years. They do seem to respond to treatments. Mine stayed stable with Faslodex and Xgeva.
I've heard good things about Xeloda, too. Let us know what you and he decide. Hugs to you!
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I have secondary liver mets. I was on Xeloda for about 6 months - no improvement and on Doxil infusion now. Second round will be end of this month. Very tired, bloated, very little appetite. No other problems so far. Does anyone have any ideas to get rid of the bloats Had to purchase elastic waistband slacks.. lolo. I am 67 years old and still working as an Office Manager.
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Welcome Countrygirl ! Sorry to see you here but glad you found us. I have no idea about the bloats but wanted to wish you luck on Doxil. Were you stable on Xeloda or it failed?
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Dang...the wind just went outta my sails. Sorry to be a bit of a downer, but I wonder when we can be assured of no progression, of mets being only the name of a baseball team from New York.
Leftfoot...hoping you get the info you need to move ahead soon. If necessary, we know taxol/herc/perj has had great success for so many....Woody! Many (of us) on the herc/perj regimen are doing well. Just gotta get thru the taxol part. So glad nothing else showed up...so xeloda did well for a while...but not long enough. I can hear your strength..we'll keep the batteries stocked on the whack-a-moles!!!
Kiss..I was blown away when my onc said-liver mets. I seriously said, "Isn't it supposed to go to my bones?" (And no where else, right Sandilee!!!). This game doesn't play fair!!! I'm sorry for your news...it stinks.
Prayers for all of us...wishing for good scans...and the right regimens to save our lives.
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Countrygirl,
Welcome and sorry at the same time you are joining this club. If the bloting is excessive you should discuss it with your onc for further investigation if need be. Otherwise i wish you good luck on doxil amd may the Lord be with you.
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I am determined not to google Liver mets. I was told I have liver mets,lung mets and spleen. To be honest the liver mets scare me the most out of everything. I have no sx (that I am aware of). I need to ask him the size and how many. Just was not ready to hear that last week. I am doing low carb and am supposed to start the Herceptin,Prejeta,Taxotere Thursday. (Been delayed twice now bleh..but that is another story).
Do you ladies have any suggestions on any lifetsyle changes I should do because of liver mets?
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Hi there,
My mom has mets in her bones, liver & malignant pleural effusion (fluid around her lungs). Due to the effusion, she hasn't been able to have a petscan since January so a lot of the changes in treatment are gauged by her pain, some nodes near her neck (getting larger or same size, etc) and the fluid reaccumulation in her lungs.
It is frustrating (to say the least) that we are unable to have any scans to see what is going on inside her body and to decipher if her symptoms are cancer related or treatment related -- to figure out really if she has gotten better or worse.
What's interesting though is with the influx of some pain subsiding and some pain getting stronger in certain areas -- the pain in her liver is gone. There was a time a couple of months ago where it crazy painful for her. Is this a good sign? The bloodwork for liver function has come back good. But since we don't have the scans, I just don't know..
Thanks so much for any and all advice!
xo,
Sarah
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Just wanted to drop in and say hi. Only wishing good scans and blood work to all. No updates. Had 2nd Lxempra last week. Nasty chemo. Hope it works.
I guess if blood work and liver enzymes ok then liver still functioning. I am still wsiting on consults IV dura lesion in head. Sigh
Hold on. Pray for good results. Eat cheese. Only good wishes for all. #cancersucks. #lifer.
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Diana50,
I hope ixempra even though nasty works for you. I hope they will soon check the dura lesion in the head so you can rest your mind. Good luck on the blood works hoping they come up ok and show your liver working well. Yeah cancer sucks !
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It stopped working for me. Otherwise I was able to handle it - one week on and one week off. -
Okay, just started on infusion with Doxil. Xeloda stopped working for me and that was pill form.Have some bloating going on and free floating nausea - Yes I too get scared of the unknown - glad I am still working
Office workers and my bosses are very supportive with me. They are my second family.
We can live only one day at a time. Try not to worry - all your feels are normal. I am at work now and took some time on this site. It helps me to hear others and their fears or good news.
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I was on it and it was not bad. Just made me tired. Now I am on Doxil as Xeloda stopped working for me. -
Hey there - I was hoping I could get some advice from some of the other ladies here that have had their liver mets treated locally. I was diagnosed with stage 4 from the get go with one solitary liver met that was 2.5 cm. After chemo it has now shrunk down to less than 1cm but now I am considering local treatment to get rid of it. My dr. Referred me to a dr. Who does Cyberknife and a liver surgeon who is suggesting RFA. I can't really decide which one is the better option. I'm sort of leaning toward the RFA to avoid radiation and the Dr. Will also be able to scan the rest of my liver while he is doing it to make sure there aren't any other problem spots. But the SBRT with Cyberknife seems like a really advanced technology that has great success rates as well. Does anyone have experience with either and do you have any thoughts? It's so nice to be able to converse with people who have past experience with this. I thank you so much for any advice you can provide.
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Hi all,
Today my onc called me and said she wants me to start Xgeva shots today. And she don't want to change anything else. Xgeva should heal bone mets and as the liver mets are under control - we will keep Navelbine. Is it a time for a second opinion ? I like my oncologist and I trust her but not 100%. I hate when I have doubts.
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Kiss, if you have bone mets, you will definitely benefit from Xgeva. I've been taking it for four years, and it has really helped heal my bones. There have been studies that show it makes your bones an inhospitable place for cancer growth, as well has adding bone. Just be sure to take calcium when you start. She will tell you about that, I'm sure. The shots are no big deal. For me, just a shot in the flabby part of my upper arm, very little pain.
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Christina,
If your liver mets are under control then your onc is right to keep nevalbine and add xgeva , i have been taking it since last summer . It really does help control bone mets. But take calcium with as it tends to suck it up. Kisses
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Thank you, Ladies!
sandilee, yes, my onc told me that Xgeva not only keeps bones away form fractures, but heals the cancer. So she thinks Xgeva is enough to keep bones stable.
Woody, you are my sanity :-)
Kisses,
Christina
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Diana, why cheese?
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Hello, everyone,
I haven't posted in a long time although I always read and keep up with the progress of all of you. I am happy to see how many of you are doing well, and I pray daily for those who are struggling.
My question is about Gemzar/gemcitabine. It looks as though I'll be starting it Monday as I've had a little progression in my liver mets while on Navelbine. I'd like to know how long you were on it and what results you had. Also, what were your side effects? I need to decide by Monday whether I want to do the Gemzar or go on a clinical trial that my onc has found.
For an update: I don't think I've posted much since I was on Kadcyla. I went from there to a clinical trial with ONT-380, Xeloda, and Herceptin. I was having good results but developed severe h/f syndrome and had to come off the trial. I then went on Navelbine. When I was going through the preliminary testing for the trial, I found out I had a small brain met. I had TruBeam radiation (similar to Cyberknife) for that. I also had radiation for a small tumor in the paraspinal musculature (muscles that are parallel to spine).
All the best to everyone. Trish
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Trish,
I was on gemzar for about 5 months. Major side effects are blood platelets, weight gain. It was given to me with carboplatin. Gemzar failed me . It was carboplatin which shrank a little the tumors in my liver but it was to harsh on the body. You will get gemzar with herceptin or alone?
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Good morning! Just sending our blessings to all of our "lovely liver ladies"!
Woody - I agree with with Kiss77 - you are our sanity most of the time. Hope you're continuing to do well!
Kiss77 - I agree with the rest of our group who chimed in - sounds like your onc in on the ball with the Xgeva being added to the Navelbine. Navelbine has been kicking my liver mets to the curb no long visible on CT scan.
Countrygirl - Welcome and glad you joined us. I, too, continue to work full time. It really keeps me going and my co-workers and bosses are the best - like you said, a second family. I think of the ladies here on this board the same way.
Freygea - Welcome to our group. You will find lots of helpful advice here and support and compassion to get us through the rougher days and help celebrate the good ones. I would not Google liver mets - gives you statistics that are way out of whack. Doctors have no way of knowing how an individual will react to treatments and there are lots of them out there. Many ladies on here have been posting for years and are still going strong. I was told last September by an "expert" that I had weeks to live...really!!!!!! So much for that second opinion...I went back to my onc that I love and trust and 9 months later they cannot find any mets in my liver. So, keep on striving and listen to your heart and your gut instinct.
Hope everyone has a great weekend!
Debbie
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Debbie, you also are an inspiration. So happy that Navelbine is working for you! A hopeful message for those of us wondering what our next treatment will be. Thanks for posting!
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Freygea...about Googling...I'm a googler. I feel like the more knowledge I have, the better. Yes, many/sometimes most of the time it doesn't pertain to me, my dx or tx, but I can weed that out. Sometimes I think thank you Jesus, sometimes I think oh crap! It's living w/mbc. I think reading what many of our sisters are experiencing is bone chilling...but it's real. And thank God we have each other...a true lifeline! It's so important to trust your care team, and be an advocate! As for the liver...in a 6-month period, I went from a clean scan (too small to detect, of course), to a liver filled with tumors up to 8 cms. In the first 5 mos of Navelbine/her/perj & neulasta, they shrunk 80%...another 3 mos another 30%...4 mos later...stable. Twenty-two months on that & able to drop navel/neu. My onc said remission. Doesn't totally erase the uneasy feelings but...thankful & hopeful. You're dealing w/more than liver...so just saying always hope! I did like you...a clean diet & list 36 lbs (which femara is returning, dang). Low carb, lean protein, loads of cruciferous foods, low sugar, cinnamon, turmeric, pomegranate juice every morn, green tea. Dr Scrivene-SH???? Anti-Cancer book has great recs. I called it my "save my liver" diet. Making it easy to work was my goal. My onc's only order-no alcohol. I know others who still drink...I never did so I didn't care...but I figure if she was that adamant, it would be something to take note of. Rest...and keep stress down...important for us all (I'm not good at either since off chemo...gotta practice).
Trish...I'm sorry for progression & the brain mets. It sounds like you procedure wS successful & I'll pray for the new combo to be totally successful w/no (low!) ses. Sending love.
Jos...I hope the specialists are completely assured there are no critters lurking. You've had such good response. My onc was very suspect about surgery on the liver, but if you've got their assurance...I hope you find answers & healing.
Woody's my go-to girl...always...for my emotional & physical well-being so she needs to be healed, with the rest of my sisters, sweet Jesus.
Chichi...glad you're doing well & Kiss...I'm hearing (not knowing first hand much about bones) that your tx sounds like the right one. Hallelujah for navel working.
I've missed some of you but my DH is helping me clean our country home & he keeps finding me hiding in different spots so I can blog. Busted in the bathroom, a bedroom & now laundry room-dang. XOXO & prayers for healing!
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Aaaww...thanks Sandilee...that really touches my heart. I just keep on keeping on and am finally learning to take each day as it comes....there sure are alot of great ones mixed in with the "crappy" ones!
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Thank you all for the information! Ronnie, I need to find some decent green tea. There is a health food store up the road but it closes early. I am going to see if i can get up there this week and see what tea selections they have.
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I just want to say to all of you kind women on this liver mets topic, thanks for being here to support each other. I don't log on to post very often, but I do appreciate you all and think about you often.
RonnieKay, that is hilarious about your getting busted for blogging instead of cleaning. I found out that my hubby, poor guy, was worried about me and wondered if I was hiding some new symptom because I was closeted with my computer too much.
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I think the name RonnieKay is wanting to give Freygea, is David Servan-Schreiber, author of Anti-Cancer: A New Way of Life. Great book.
My favorite green tea is Triple Leaf decaf green. That brand is decaffeinated naturally with a carbon dioxide process rather than chemicals, which is supposed to maintain the beneficial antioxidants. (I avoid caffeine because of fibrocystic breasts and sleep issues.) Triple Leaf also makes a decaf green jasmine tea that is heavenly when mixed with regular decaf green and honey. I get it mail order.
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I am going to go book and tea Shopping.. love an excuse to go shopping!
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Thoughts on Ablation vs. resection? I was given a chioce to deal with my one met in my liver. The team of specialists said they didn't have a preference as they both have about the same %s.
thanks
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So.... TMs going down. Pain gone. And.....scans show progression. Tumor in liver growing, also progression in bones. On to Doxil.
I don't understand what's happening at all.
Leah
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Leftfoot,
I am sorry you ended having to decide on ablation versus resection. I am not xandidate for either procedures. But from all the data i have read, it states that of the tumor is judged resctable it has abetter out come and longer survival rate than ablation. Ablation is a minmal surgical procedue while the resction is a major operation. I pray God to inspire to choose the right one for you.
http://www.ncbi.nlm.nih.gov/pubmed/23029051
http://www.ncbi.nlm.nih.gov/pubmed/22288086
http://www.nature.com/srep/2014/141128/srep07252/f...
http://www.hindawi.com/journals/hpb/2009/346863/
The above are few articles comparing both procedures, i hope they help. Prayers.
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Leah- so sorry. Hugs to you. May Doxil be your wonder drug.
woodylb- thank you so much. My gut reaction was to do the resection but am not sold. Thanks for the articles. They will help me process everything.
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Leah,
I am so sorry for the progression , i hope and pray Doxil will be the right medication for you. Most of the time most of us do not understand what is going on either. Hugs.
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Leah, so sorry for the progression :-( Hugs to you. -
Leah, I am hoping the Doxil will give positive results.
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I purchased some Matcha tea today. I found Milk Thistle. Is it worth it to take Millk Thistle? It is supposed to be good for the liver yet I do not want to overload my liver with mets? Am I thinking of this wrong?
I continue to send you positive energy Leah. I hope you were able to get some rest in the last 24 hours.
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Freygea and everyone,
I don't post much, mostly reading, today did my 6 of 8 Tykerb/Navelbine treatments, almost no SE and worried is it working. Is not it funny? we have SE and complain and when we dont we think oh, maybe its not good... thoughts?
But that is not why I'm writing. I have an oncological herbalist at the Centre for Natural Healing who is just amazing, he works with my oncologist and according to the chemo I am getting, he designs my protocol. I am taking handful of all kind of supplements morning, night and even some in the afternoon. Milk Thistle and Matcha tea is on that list. PM me if you want his contact, he is operating I think from Oregon, but mostly uses Skype and email. I saw him only once on Skype at the "meet and greet" 3 years ago, but we commucate regularly via email. He is a real gem.
I must say I love love love Matcha tea, try Starbucks Green Matcha tea latte, it is not on their wall menu, but they make it if you ask them (I think its on their Secret menu). Hope it helps.
xoxox
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Thank you Ella! I really enjoyed my cup of tea tonight. I will grab the milk thistle this week. No dag Starbucks here in the Lower Keys that is close enough to get to but will definitely try one on my next visit to Key West. I am currently using Turmeric,Matcha Tea and will add the Milk Thistle . I will try those for 4 weeks and see how I do.
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Hi Ladies!
I received a frustrating phone call from my med onc yesterday. He called (which I appreciate) to give me my liver biopsy results- finally! But, he said it showed no cancer. My scans have showed dots everywhere and small lesions in a few places. This is my second liver biopsy to come back no cancer. I realize I am great at hitting the smallest odds ("you have lessthan 10% chance of recurrence...." ha), but seriously?!?
I hate being glass half empty, but I am not happy. I am at the top centre in my area. You would think their success rate would be a little better?! I guess I was counting on this test to give some answers on why my CT Scans keep saying "everything else stable, but small progressions in the liver"....I am frustrated. Maybe taxol has done its job quickly and knocked the cells out? I get my CT Scan results this Tuesday.
Has anyone else kept getting "clear" biopsies? My doctor is positive there are diffuse mets there....
For that matter has anyone else had 2 or more biopsies to the same site? I told him I was willing to do it again, if it would give me some answers. It kept me out of a clinical trial last year because the first biopsy came back negative. Very frustrated! (and I should be happy, but I am not)
Thanks, needed to vent!
Maureen
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Hi Ladies
I am 36, no kids, not married and was diagnosed with mets to the liver on June 8, 2015 after my doctor told me a year and four months prior that it was a cyst and I had nothing to worry about and that I was fine, so I didn't. I trusted him. Now look where I am...wondering how long I have left, will never be a mother, why marry as I will eventually leave my husband a widower? My family is so positive and telling me I will be around for a very long time. They are a wreck as well as I am the baby. Well I hope that is the case as there is so much that I wan't to see and do. I have two very small lesions in my liver and have no idea how long they have been there. I took my first Zoladex shot yesterday...and cried as I knew motherhood was gone for me. Ibrance and Letrozole started today. I am praying for as little side effects as possible. I just want to have a good quality of life and to be happy. I want to live!!! I want to see my dreams come true....I am resting on faith, strength, and courage.
Monika
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Hi Monika - same thing happened to me - they saw something on my liver 1 1/2 year ago and I was told not to worry it was something similar to a varicose vein - now I have 2 liver mets - one 5 cm - frustrating to say the least. But do not despair - first of all you are young and I assume otherwise healthy so you will probably tolerate treatment well - and there are many treatments - also this site and the women here are amazing - so much knowledge, compassion and hope - please stay tuned. The scary parts of stage IV seem to come and go, at least for me - I so much relate to your pain and fear of loss, but hang in there - you will find many have your back, sending you hope and love. Susie
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Hi Modum,
I can understand your frustration and it is valid, they should be able to extract a good specimen for a good result. These things happen though, i would advise you to do another one and maybe choose a different person to perform the biopsy. If the dcotor thinks it is liver mets then it is most likely what he says it is. I hope you soon find a way to put your mind at ease and you get proper treatment or get a confirmation that it is not what it seems to be.
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Hi Monika,
I am so sorry you had to join our club here , but you did right by coming here first. It is very scary to find out you are stage four with liver mets specially at such a young age. But do not dispair. Some people live with stage four for years and a lot of new treatments are available. You will meet many ladies here who have been stage IV for a long while. I am not telling you it is a joy ride but nevertheless it is doable.
Once you are stable you can have a good quality of life . It has its ups and down, but the important thing is not to let the disease take over . Surround your self with family and friends and people who give you support and not people who do not understand. Keep your faith strong and your will to live stronger.
You are young and even though treatments are sometimes hard being young is an advantage.
You can come here whenever you feel like venting or just want to connect nd you will find how wonderful and supportive these ladies are.
I pray your treatment goes well and works on your mets wonders. I took femara for three years and it was ok and the side effects were tolerable. Good luck to you and prayers that soon you will get to a good place in which you feel comfortable .
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Thanks Ladies for the support! I am sure I will find myself here often as you ladies truly understand the path that I am beginning to navigate!
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Hi Ladies,I just completed my Weekly Taxol #3, and will continue with weekly Friday Taxol without a Friday off for now. Good news is my cough is better. Praying that it is also working on my liver mets which is the most concerning for my MO as I was told it is the most lethal of all my mets and it has been spreading fast and furious in the last while. The bone mets pain is being controlled better now with both short term and long term release hydromorph Contin 3mg and 1 mg. but if I'm too active I still have break through pain. So I'm hoping that the Taxol works on the bone mets also. My hip mets also still ache but that can be another side from the Taxol with the arthritis worsening. It takes every bit of my energy now to fight this. Lots of bed rest. Each day after infusion a bit stronger.
Cathy
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Monika- What a nightmare for you. I''m so sorry you had to find yourself here. I have relatively new liver mets- discovered earlier this year after three years of fighting bone mets. My doc just put me on Ibrance/Letrozole also. I've just started my third cycle, and it is pretty easy on me so far. I really hope it works on my liver, and my doc is optimistic.
Cathy- I'm so glad the pain is starting to let up with the Taxol. It sounds like it's starting to do it's job. Hang in there! We're here for you.
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Cathy, i am happy to know you are feeling better and the pain is under control on Taxol. Hang in there, i finished taxol a month ago and it did a great job on my liver and bone mets. I hope you get the same results. The road is a bit tough but if it works well it would all be worth it. Prayers to you.
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so I just got a message that I have an appointment at the U of W on tuesday. I had no idea I had one as I didn't schedule it. I assume it was automatic as I am due to be having either a liver resection or ablation on July 8th. I am not in a funk. It hit home that I am having yet another surgery. I feel like I just had one evern though it was in February. I am tired of all of this. I just wanted a little time to recouperate. Iguess 6 months will have to do. I know these procedures are probably less of a big deal than brain surgery and even a double mastectomy, but it feels different. I think because I am just tired. Not scared, just tired. Tired of scrambling to find child care coverage. I just got back into my workout schedule and up to my normal only to have to take time off again. I feel ike I just asked my friends around me to help me out as I recovered from my brain surgery. Now I have to do it again. I had to ask my step mom (whom I am not close to and doens't have a close relationshiop with my kids) to come up and help me out for the week of my surgery. My husband has to go out of town for buisness. My mother in law is taking care of her husband ( who is waiting to get listed on a lung transplant list). My sister in laws each took time out to care for me in Feb and can't come again so soon. I have no parents of my own and my siser isn't an option. so I am having a hard time this go round. Life just keeps going Amd the kids are out for th summer which means the days are very l ong.
thanks for the vent. tomorrow I tlak with oncologist about best route for surgery and what changes in meds if any she wants. Ugh.
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Leftfoot...I'm in Renton, a grandma, retired school secretary, love kids & pizza...I'm serious when I say call me..or pm me (I can give you my #). I can't imagine juggling everything w/kiddos, but you're doing it & will continue for a very long time! Thinking of you...good luck at UW...my stomping grounds!
Yes Shetland! He's the author...and didn't know that he'd passed...love his insight on so many levels.
Modum...A scan should show them exactly where to biopsy...this is so weird...if it's true-no mets-they'd better be sure. And then there's packoftwo & mdillard....makes one question!!!! It's our lives, not the game of operation!!!
Tryn...you got this! Hang in there...mets shrinking as we type!
Leah...TM's lower...you're right...it doesn't make sense. I hate this stuff. Praying, praying.
Feeling very down lately...got shake it...dang. DH just doesn't get what's up since everything's going well...me neither. It's such a crappy place to be sometimes...but it's where we're at so...sorry guys, pity party.
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Leftfoot,
I am so sorry you are going through this alone , you are right sometimes it gets too much specially when you have children . I hope you soon find someone to take care of your children so you can have the operation and get some rest of it all for a while. My prayers are with you. ((HUGS))
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I'm nearly a 1.5yrs since dx (stage iv from the start, early 30s) and wanted to say how much I've learned here - an incredible amount - both technical medical stuff as well as about the emotional roller coaster. what I've heard so many here say has proven true for me, too. it does somehow just get easier than at the beginning, even if not necessarily better. I've found it so helpful to work on psychological conditioning (sometimes even tougher than the physical exercising!) - resiliency seems the word of the year.
it is not easy. and though they truly suck, sometimes a pity party is the best outlet. I see it like a 'good, long cry' and if I'm lucky, it helps me through whatever was snagging me faster than just tolerating the growing, gloomy heaviness. sometimes, it just is what it is. RonnieKay, I'm hoping your pity party pushes you back into a better place.
scans again came out indeterminate. liver lit-up in exactly the same place on repeated PET and MRI showed 'something' in the corresponding area - but not conclusive for mets. MO sent scans on to liver doc and they agreed it best to closely follow until more can be ascertained. while I know I should be thrilled the area didn't seem to grow after 3 months, I'm still kinda bummed it wasn't just a false-positive. it's hard to think this is anything other than early signs of progression - but, I guess that's my glass half empty perspective. my family's been saying no definite bad news is good news; while I know I agree, I'm not really in the mood to put up balloons and celebrate. and I'm frustrated with myself for that.
so, scans again in September. in the meantime, dh & I are doing our best to live as we want and not sweat it until there's something to do about it. that's something I learned was possible from so many of you ladies. I can't thank you enough.
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leftfoot - best of luck, sounds like a tough decision. I haven't had resection or ablation, but fwiw, I've heard they don't definitely require a difficult recovery. I'm wishing you a successful liver met-a*s-kicking procedure and a shockingly fast and easy recovery.
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Met with oncologist and a IR today. Oncologist was saying she would lean towards resection so that they can have a definite tissue type. IR was very nice and explained things in a wonderful way. Much better than the liver specialists at the U of W. If my decision was based on presentation and approacability, I would probably choose him. But, he did say that he wasn't sure he could get a good biopsy as they place the ablation needle first. This might effect his abilty to get a good sample for biopsy. He also said he woudl do the procedure under anathesisa so that means it is not altogether different than a surgical resection. I am leaning towards resection so that I can know for sure what type of tumor we are dealing with. If my Her2 + status has changed, it would effect what type of medicine we move on to. Still thinking and will make final decision tomorrow. If I go with resection, the surgery will be July 8th. And I am holding out a slim hope that this is not cancer. My brain wasn't so maybe this is not as well. My oncologist said this was another reason to get the tissure.
spicypetunia- I think it is a good thing they want to watch your spot. They weren't messing around with my spot so it gives me hope yours is nothing.
thanks everyone
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Leftfoot=
Is Laparoscopy an option? What is the recovery time after resection? I had done laparoscopy and was told that resection recovery is very tough (6-8 weeks). If you did not ask yet, see what they say.
~E
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Thanks ellamilania.see the surgeon tomorrow so I'll ask. It will be laparoscopic. it's inly a partial resection so hoping that means less than a 6-8 week recovery.
Did you have ablation or resection
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Hi Ladies... it's Tuesday and this is the day I start to feel more like myself and less like a chemo patient. Thank you ladies so much. I have to say of all the Favorite threads this is one that makes me smile and appreciate the kindness and support so very much. I learn so much here too and it makes me feel more like I can keep fighting and get past this "bump in the road". Yes the pain is more managed now as long as I am not too active. I am hoping that yes it is shrinking the liver and bone mets and I feel my lung mets are much better as my cough is better (almost gone). However the Hydromorph Contin 3mg and the Hydromorphone 1 mg is such a relief to my pain also. You ladies are great. Thank you and I pray you all are repaid for your kindness with many many years of stability!!! Your support means so much to me. THANK YOU!! Leftfoot - I'm praying for you too.. may you have better days ahead.Spicey- I hope the cry helped. You are not alone here. Sorry your so young with this on your plate. I'd just like to hold you and comfort you. Hugs.
Cathy
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Spicey,
Good to hear from you. It is very upsetting when results are inconclusive. It is unsettling. I had the same thing at my second dx the liver showed first , the bones where inconclusive on both MRI and bone scan. However, on the PET the bones showed no activity, so mets were ruled out but three months later they were lit like a xmas tree. This is to say it could be either. But you have made it so far , you will make it much further God's willing. I pray your results are a faulse alarm. ((HUGS)).
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Leftfoot,
I hope your docs will do what is best for you. Prayers that you will prevail over this.
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Leftfoot=
I had laparoscopy with RFA and was out and about in a week (carefully), and in a month a was back to my swimming pool.
~e
xoxox
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Hi ladies, I have been following all of your stories and you are all an inspiration, true warriors. My mom is also dealing with liver and bone mets for the past year. Her last scan besides showing significant progression it also shows that she has developed pseudocirrhosis. I know it is serious and I have been crying all afternoon. Anyone with experiences with pseudocirrhosis? Thank you
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Fhaido,
Thank you for your kindness and nice words. I am so sorry about your mom, cancer really sucks. I do not know personally anyone here who had this condition, but i know about it in general. The pseudo before cirrhosis is an imaging diagnosis. The key word is cirrhosis and it can cause portal vein hypertension. I truly hope the doctors find a way to treat your mom. I pray for her and you. I am glad you came here , even if we cannot help but we are good listeners if you want to vent. God be with you. Hugs.
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Very sad today, a very close friend with stage 4 bone only disease passed away last night. She was ok 2 months ago and deteriorated until passing last night. She was 5 yrs from diagnosis. Stupid cancer you took another great and lovely person.
Then I saw my med onc today and got the good news bad news results. He gave me an 8.5 out of 10 after 3 cycles of taxol. I am stable (again) in lungs and bones, but my liver...keeps on giving me grief! 3 out the 5 lesions have decreased, but 2 have increased a bit- what a crazy disease! Still asymptomatic.
The good news is (?) that they did get cells from my biopsy and my receptors have not changed, still ER+ HER2-. Because of positive tissue, I can now go on for molecular testing and see if I have any other mutations going on.
Sending my prayers and thoughts out to my fallen friend and to all of you ladies here. May we continue on in decent shape. Not much else to say today-
Maureen
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Thanks Woody for the love. Things are not looking good based on what I am reading. Now we need to see how the onc wants to proceed.
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just sending cyber hugs to everyone.
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Maureen ,
I an so sorry about your friend may she rest in peace. Unfortunately this disease continues to harvest so many beautiful souls.
I am happy for your good news, as for the liver well, it is harder for it to get stable. At least they got the biopsy right which will allow you to do some further testing which could help in the way to manage your disease. I had a genomic testing done and it helped me greatly since my FISH showed negativity for HER2 but ky genomic testing showed extreme positivity. Thanks be to God i am now NED with no evidence of disease. I pray God you get to this status too and. Hope for all of us we continue to do well. I am asymptomatic too even though my liver had around 15 tumor. So have faith and i hope soon you will get all god news.
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Leftfoot,
Right back at you ! Keep us posted. Sending prayers.
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Fhaido,
You are welcome anytime. I hope her onc finds a way to help her. God be with you and her , please keep us informed. Hugs.
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Modum - So very sad and sorry to hear of your friends passing. One of us. Take my hand and now lets kick cancers butt hard and steady. I'm doing Taxol with you. We are sisters now. Glad to hear of some good news for you but not the bad. Hugs to you and all the sisters.Cathy
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I haven't posted on this thread for a month. I have tried to keep up to date with how everyone is doing. I want to say hello to our newcomers and say that I am sorry they have found themselves here.
I haven't posted for some time as all hell has been let loose here.
I had a focal seizure about two weeks ago and was admitted to hospital for 24 hrs. The seizure didn't last long, about 30 seconds. I was admitted to the stroke unit and had a brain CT followed by an MRI. The brain MRI did not find anything in my brain but the dr. there told me the cancer was in my meninges so I thought I had LM mets. I was discharged back to my onc. for follow up. He works at a different hospital and when he requested my scans from the first hospital they wouldn't let him have them unless I went down there in person and paid $50. Rather than messing around any more my onc ordered another brain MRI which I had done yesterday. I haven't had the full results but i did get a phone call from my onc to say that the MRI they did showed irritation to the meninges under a previously treated skull met but more seriously a narrowed, partially thrombosed large vein on top of my brain. How the first hospital missed this I will never know. I think they just automatically assumed because I have stage iv cancer they didn't have to look any further for a cause. My onc was furious and has arranged an appt. with a neurologist to try and get this treated. It is not cancer related. The first hospital gave me phenytoin, an anti-seizure medication which has a side effect of causing bone thinning. Just what I need with a family history osteoporosis and bony mets. I am hoping to get it changed when I see the neurologist.
I also had a whole body MRI last week to see if my chemo is working. My bone mets are stable, My lung mets are insignificant but my liver mets have come roaring back after showing regression on the previous two scans. My onc is arranging a liver biopsy to see if my mets have changed status.
Oh - I almost forgot my magnesium levels were so low on my last blood tests that I am now on supplements. One thing after another.
Woody, you mention ky genomic testing. What is that? I googled and didn't get very much on it. Why did your doctor decide to do this test as well as the FISH test?
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Spring,
Welcome back, you were missed:). I am very happy the seizure was not cased by cancer and that it can be treated by a neurologist. I hope you feel better soon and this incident does not happen ever again. Good news about your mets being stable and very sorry you are progressing again. Your onc is right to request another biopsy to check the status.
I requested the genetic testing not my onc, i informed him i wanted to do it . I had read about it and seen it here , so when my cancer reoccurred it showed + 2 on the HER2+ front which was equivocal. The FISH came back. Negative.
Later i decided to perform the test through the American hospital in my country and was told they will send it to Germany but they will have to perform anpther histological test again before sending it and they did , it showed +3 for HER2 they did another FISH it also came back negative. I was really losing hope when the results came back ( three weeks later) with a CISH and genetic testing results. Which stated extreme positivity to HER2+ and that they must start me on anti Her2 meds.
The test performed by the research lab was called genomic testing. My MO called it intelligent genomic testing. It also showed all the genes and what chemo and treatmebts are likely to work for me backed up with scientific research and their level of credibility.
Thanks be to God i got full response on the regimen. The test is not standard and is not covered by the insurance and the cost was 6500$. But it was worth every penny , it bought me more time. The headquarters of the Lab is in Arizona. If you like i could forwatd it to you.
I hope you will get a new break with the biopsy. My prayers are with you . Let me know if you need more info. Hugs.
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Hi woody,
Thank you for your reply. Please could I have the information on the lab in Arizona. Was it the CISH test that proved positive for HER2 or did it show up on the genomic profile, too. I am more than willing to pay for it. I had a bone biopsy done 15 months ago which showed I was now TN but for all sorts of reason I am not confident about this result. Even less so today as the biopsy was sent to the same hospital where I was admitted 2 weeks ago which failed to interpret my MRI correctly.
Until I see the neurologist I cannot say for sure that it is the thrombosed vein which caused the seizure. It could be the irritated meninges. But the vein is the biggest issue at the moment because it could block completely and cause a major problem so we need to deal with that first. The brain MRI suggested that the skull met over the irritated meninges may be active again but we are not going to treat until I have seen the neurologist.
It is so lovely to read that having got your Her 2 status sorted out that you are now NED. Long may it continue.
Spring
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Spring...so glad you've let us know what you're going through & my prayers for the best possible news and smart drs who know how to treat this.
Modum...my thoughts are with you as you/we mourn the loss of your friend.
Leftfoot...sad that UW didn't offer better care...I've had a few minor blips, but overall great care. Thinking of you.
Spicey...at a young 30....you should not be dealing with this horrid stuff....no one should...but it makes me that much more angry.
I'm praying for all...sending love & hope & off to bed. I got to celebrate my 3rd bonus bday on 7/2...that's what I'm calling that day now, since they thought I wouldn't see my 7/2/2013 bday. Very thankful.
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Hi RonnieKay,
Happy Birthday for the 2nd. I hope you had a lovely third bonus birthday. Did you do anything special?
I just heard from the hospital and my liver biopsy is on the 15th. I don't know how this will interfere with the treatment for my blood clot. I haven't heard from the neurologist yet.
Spring
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Ronnie- I am sure I will have great care. they were great with my BMX and I am sure I will breeze through this procedure as well. I have found that they don't explain things as well as other institutions around here. My husband explained to me it is because the other hospitals have to deal with things that have to do with customer satisfaction much more than the U. I know the U is where I need to be and have all the faith in the world in them. I just hope I don' t have to spend much time there. Would rather be at home. I will keep you updated.Hope you have a wonderful birthday. the weather around here is just amazing. My dog however thinks it is too hot. I am looking forward to the cooler weather this week (80s) not 90s.
Springwatch- I hope you get your answers soon.
I was able to attend the womens world cup yesterday. What a wonderful experience. Happy that my littles now have a new generation to look up to. this was my first final. I had been to a semi fianl and round robin games in 2003 and 1999. But yesterday takes the cake. I am a soccer fanatic
take care everyone.
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Hey everybody, how quickly can liver mets grow? I was NED at my last scan mid May. Past four weeks I have been experiencing a growing problem when I try to eat - no acid reflux but a huge blocked feeling at the top of my stomach, eventually it goes away and I can eat but I feel full quickly and the whole feeling is super unpleasant. I rang my onc today, who immediately said he wanted to look into it and had ordered a CT scan for Friday. If its good news, i.e. no cancer to be seen on scan, then he is going to treat me to an endoscopy (by way of a reward ha ha ) to see what is going on. Cant't say I like the idea of an endoscopy very much, but I know I would rather have a shy little hiatus hernia than another liver met pressing on the stomach valve area. If it's not one thing, it's another. Anyone had anything similar? Stupid cancer. Boo.
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I had a similar problem. It was actually caused by reflux due to my Medd. I was prescribed a acid reducer and all was better. This was after an endoscopy. I hope the same holds true for you.
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Thanks Left, that is encouraging. I feel like I have been pumped up by a bicycle pump. If it takes an endoscopy to diagnose this, then so be it. I was only cleared of liver mets last August, and am so hoping to last a little longer at least without more treatment. Thanks for your help. Boo.
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Boo,
In my own experience liver mets can grow back quickly. Pain from liver mets is usually associated with upper right abdominal quadrant pain. What you are describing doesn't sound like this but you are right to get it checked out. It could be any number of things and only medical investigation will give you a definitive answer. I hope you get some answers on Friday when you have your CT scan.
spring
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leftfootforward - It is thrilling to hear that you were at the world cup finals. What a fantastic game. Those young women played their hearts out. They certainly are great role models and I hope your young ones will get inspiration from them.
Boo123 - This is my first round with liver mets so I don't have any idea how long they were growing before diagnosis. I do know that I had many gastrointestinal problem for at least 5 months which finally sent me to the doctor. I changed medication for my arthritis and was sent for a gall bladder ultrasound. Oddly, before I got to the ultrasound, I developed severe right lower quadrant pain which sent me to the ER and got the ultrasound right away. That's when the proverbial poop hit the fan and I found out it was the liver mets all along.
I've had one recurrence with the severe pain but my major problems have been all sorts of gastro symptoms including what you described. Sometimes I eat well and other times I don't eat at all. Reflux comes and goes and it doesn't seem to matter what I have eaten or not eaten. Fortunately, Pepcid Complete works well for me most of the time. I certainly hope your scans come out well and your doctors find a simple solution.
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Thanks both to Spring and Sarah. This is such a complicated disease, so hearing your thoughts and experiences is helpful - hopefully this will all be something I can put behind me. Got appointment time sorted now, so am keeping myself distracted until Friday. Thanks everyone for your help. These boards are a wonder. Boo
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That's a good question, Spring. Do they have you on any tx for the clot at this time??? I'm glad you've got the biopsy appt but I'm sure you will you see the onc before then, right? Just praying the clot subsides...disappears on its own. It just seems like you're due a major break!!!
Leftfoot...it must've been thrilling to be at the soccer match!!! They were on fire. Such athleticism & talent & teamwork. And really, Hope never ceases to amaze me :-). I was thinking you'd decided against UW. Advocate....you know the ropes!
Boo...my mets exploded over a 6 month period...no symptoms except a bit of fatigue & oddly, high bp. Hope you find a different, easy to destroy, culprit to the full feeling!
Thinking of all..,praying for healing.
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Last scan on Xeloda showed signifigant progression of liver mets - have just completed 1st cycle of Navelbine - 2 weeks on and 1 week off - due to start 2nd cycle Monday -I got my blood work today and my tumor markers are down - also, I was having pain in liver area and weird digestive disturbances which stopped after 1st infusion. I was reluctant to try another chemo as no chemo has worked for me yet - diagnosed 3B in March 2012 - dense dose chemo for 6 months and still progression to stage IV - dare I hope this might be working? Chemo has always hit me hard and Xeloda was very difficult for me - Navelbine is a walk in the park compared - only sleepy and tired the day after infusion. My doc is going to do another scan (contrast CT) after 3rd cycle - I have been one who has received consistent "bad" news (many bone mets to start, then liver) so I have some trouble mustering up an hopeful attitude. I would love it if this buys me some time.
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Apackoftwo,
I am glad you seem to be responding well to Nevalbine with your TMs down. Most of the ladies here who did Nevalbine responded well . Hopefully it will be your case. Even though yu did not respond well to other chemos , this does not mean you won't response to this one. Sometimes it is just not the right med for you. I hope nevalbine is and that you would soon have good results. There is always hope. Keep us posted . Prayers.
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Apackoftwo- I am hopeful that tumor markers going Down means good things for you. I have good thoughts that navelbine will work for you.
I apologize for typos as I am home now and trying to recover from my resection. From what I understand I didn't wake up very well and they almost put me in bipap but I got there in my own. They were able to respect the tumor and only took about 20%of my liver out. No surprises so that's good. Now I am honeteyongbto not take narcotics and am on anti coagulants shots. In a bit more pain than I thought but holding my own. Hoping to be over the hump soon.
Ronnie- u of W got the job done but made a few mistakes. Not that great with the details. They have a new pre op procedure that they implemented right before I was wheeled off to OR. Almost kept me from having surgery. They also didn't seem to know about my chemo status and when I should resume. Had a back n forth about that one. OT and PT were great and so was most of the nursing staff. So overall very pleasedwith rests. Follow up in two weeks.
Take care everyone
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Leftfoot,
I am happy your operation went smoothly without complications or surprises. I wish you a speedy recovery and successful results. Praying for your peace of mind and a touch of healing.
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I have nothing to report but know I am thinking bout you all. Still dealing with brain lesion that appear to be b9 but spinal tap Wednesday. I think chemo Lxempra is working as liver function tests in nomal. Scan in few months. Don't give up. Options. Always think options ️hugs
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Woody - thank you for support - left foot - I think you are soooooo brave - you all maintain such a positive attitude and the love and support you offer is amazing - I don't often post but read almost everyday and it helps me keep things in perspective. Susie
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Hi everyone,
I've been around several forums for a couple of weeks now, have found this one to be the most informative, supportive and easiest to navigate! I'm in Australia, we moved here about 18 months ago from the UK, which only adds to the fear and loneliness I'm feeling right now. Was originally diagnosed in 2007, had lumpectomy and went through the standard chemo and radio regime quite easily helped by massive support from friends and family. Did five years of tamoxifen and got on with life with a vengeance, changed careers, travelled loads and brought up my two boys with my husband, I really thought the big C was all behind me.
Coming here to start a new life was challenging but something we'd always wanted to do. Hubby is Australian so it's home for him and the boys were keen to experience life here too, the first 18 months were great and we just bought a beautiful house by the beach. Then about three weeks ago everything came crashing down. A trip to the GP with a dicky tummy led to a scan as he thought my liver felt a bit swollen, to being told I had 'multiple' mets in my liver. All other areas clear. To top it all they now class me as triple negative although the onc is not sure about that has I do have a 3% ER positive, he says it's a bit of a grey area which is not very helpful. Have just started on nab-paclitaxel chemo every 3 weeks (Abraxane) to hopefully shrink them, at the moment the whole area is quite hard and swollen. I can't believe how quickly this has all happened and how ill I suddenly feel. Friends and family back home are all devestated and its so hard being so far away. have had to turn down a job offer and the financial situation is looking dire. On top of that its cold and rainy and things just couldn't be any more depressing!!
Hoping to hook up with some fellow fighters for support and friendship.
Isy
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Welcome, Isy. I'm so sorry about your recurrence. It's so devastating to think you are fine and then find out it's in your liver. I know I could hardly stop crying when I got my news. I think you will feel better once you see that chemo is doing its job. I had Taxol (similar to Abraxane), and it worked so well for my liver. These days I am enjoying my life and family, and I think you will, too. It's good news that other areas are clear. There is hope!
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Isy,
I am sorry you find yourself here again after a long period of cancer free. It is devastating and frightening but stage IV is not always the end. Like Shetland said it is good it is only in one area and there are many treatments out there even for triple negative. It is hard being faraway from family and friends and home, but you have your husband and boys who will give you the support you need as well as us here. You will find great ladies here and a lot of support and information from people with similar situation.
You mentionned a scan which discovered the liver mets but you did not mention if a biopsy was performed on those liver mets. If they did not do a biopsy before starting your chemo, then i advise you to get one and request one as soon as possible. Cancer can mutate and change status allowing you better treatments and more options.
It is very important to do the biopsy before anything. Stage IV cancer is not an easy ride, it is bumpy because you never know what comes next but it is doable. After you get over the shock things become kind of a rountine. The most important things is to have hope and emotional strength and faith. Do not let it destroy you. Eaiser said than done but i am sure you will get there. Feel free to come here and vent anytime you like , you will always find good ears and warm welcome. I hope you have good doctors and good treatments so you can resume your life. God bless you.
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thank you for your kind and positive words ladies. I really admire your positive outlook and hope I can get some of that soon! Yes I did have a biopsy Woody which is when they found out that my previously ER+ status had morphed to triple negative. Although apparently it is at 3% - some practitioners class that as weakly positive for others it needs to be at <10%. I've already been discounted for a triple neg trial becaus of this. Last time I saw onc he was talking about maybe combining some hormone therapy in the treatment - in the next sentence he was saying that hormone treatments would not work for me. I feel a second opinion coming at some stage soon.. HER2 is definitely neg. as you say you never know what comes next and I'm finding the uncertainty so hard.
All the best to everyone
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Isy i am glad everything was done properly , i agree though with your doctors 3% ER+ is not too much it is too weak , it will not effect the cancer. However, a second opinion is always welcome and you go with what feels right for you. Being triple negative sometimes has its benefits. It responds very well to chemo , it has been 8 years since your last diagnosis , this is also in your favor, and my onc told me IDC triple neg may more than other go on remission. So why not believe you may be one of those. I have a friend who is triple negative her first diagnosis was 24 years ago and she was advanced and had only chemo and radiation. She was 33 at the time and the cancer was very agressive. It never came back. So i hope all works in your favor.
Abraxane is a good chemo and it may shrink your tumors or even make them disappear. As for not knowing what comes next and living always in fear , it is hard , i know but somehow eventually it gets easier even with the ups and downs. There are some ladies who have been living with satge IV for years. Treatments may never stops bit it becomes part of your life and if you look at it from a positive angle , that we are luckier than the ladies who had the same diagnosis years ago and who did not have the options we have now, well you feel blessed. I know there are no positive sides to cancer but people get sick and die from dofferent reasons , there are no guaranties even when we are healthy that we won't die from something else. I know you know all this but fear is crippling and it makes our thoughts fuzzy.
You may beat this again and survive for many years to come and i wish you this from the bottom of my heart. I take it one day at a time , i live as normal as i can and do my chores , while i am alive and healthy , i want to enjoy what i have without letting the stupid cancer make me forget that i am alive dispite it.
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Woody you are such a tonic - your kind words made me feel better than the endone tablet I had earlier on. (My painkiller of choice and seems to take the edge off the bad thoughts). They should bottle what you are giving out and sell to everyone going for treatment! At the moment for me it is just a waiting game and trying to adjust to this new way of life. Thank you so much for your heartfelt response to a complete stranger on the other side of the world
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Isy, you are welcome anytime. The fact that you reached out in here you are no longer a stranger. Plus i love helping out , if i can make a difference , it makes me happy, it is gratifying
). The pain will go away when you start chemo and you will feel better, even though you will have to deal with with side effects but it is all worth it if it kicks the cancer out . Feeel free to post anytime, and if you need anything you can private message me. Keep me posted. -
packoftwo,
I would be quietly optimistic about the navelbine working. I had liver pain after starting my gem/carbo therapy and my onc said they used to get very excited when this happened as it was often an indicator that the chemo was working.
leftfoot, I hope your recovery from your resection goes smoothly.
Diana, I hope all goes well with your spinal tap on Wednesday.
Isy, Your oncologist is correct that treating with anti-hormonals is a bit of a grey area. This article may be helpful but may also raise even more questions. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC385136...
If you send a PM to bestbird who contributes to this forum, she has prepared a very useful summary on treatment for metastatic breast cancer. This link will give you the instructions on how to get it. https://community.breastcancer.org/forum/8/topic/8...
I was ER+ and converted to TN when I had a bone biopsy following my recurrence 16 months ago. I have a liver biopsy scheduled for Wednesday to see if the status has changed again. Not optimistic but I told my onc we have got to the "leave no stone unturned stage".
Ronnie, I still have not seen the neurologist. Phoned my onc's office on Friday to find out what is going on.
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Hi Ladies,
I was just trying to catch up with everyone. Have been rather under the weather. I was not doing so well with the bowel movement issues and after getting my blood work they pulled me from having chemo as my neutrophils were too low. Then I had a severe skin reaction (very itchy then hives) to both arms and hands and chest area, and I hesitated to go to hospital. However I went to one 25 minutes away. I had a severe itchy redness then it turned to hives. I am starting to feel like does all the bad stuff have to happen to me???!!!!!! They gave me a shot of Benedryl in the hip only after blood work, xrays to pelvis, told me to take this stuff (purg-odan) to make my bowels move. It is the stuff that warms up in water and is not that bad. As it had been 8 days since I had a bowel movement and only like 3 in a month. I was so bloated and uncomfortable. I am not sure what my MO will due about the hives. He will get the report today. So far I am moving bowels, and I have to take Benedryl every 4 hours. Need to rest now .. hope you all are doing great.
Cathy
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springwatch, thanks for the links, really useful, the more info we can get the more empowered we feel to take some ownership of what's happening to us. The area of being weakly positive to hormones is quite a contentious area with quite different schools of thought on the cut off points. Was really interested to see in bestbird's amazing resource that even letting a sample sit around for too long in the lab can affect results. Onc is quite open to further biopsy down the track.
Scalp is starting to itch - I know what that means, off to buy myself a stunning wig.
Love to all
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Spring,
Wishing you good luck on tomorrow's biopsy , i hope you get results you need to get an effective treatment. Praying you soon hear good news and hear from your neurologist. Keep us posted.
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Hi Springwatch - what do you mean by quietly optimistic? I have had some concerns as there was a woman posting on Navelbine site who had experienced lack of pain and reduced tumor markers but still with progression. I asked my onc about this and she said it is not a common occurrence but it does happen. I had my 3rd Navelbine infusion yesterday (beginning of 2nd cycle) and other than being very tired (sleepy) this is the easiest chemo I have done so far - I am also feeling little "twinges" in my liver area today - not pain, just a feeling that something is going on. Although I had several tumors on my liver (one 5 1/2 cm) I had not had a lot of pain until about 2 weeks before starting Navelbine - I have been having some intermittent shooting, stabbing (short in duration) pains recently - my onc said it could be the liver but could also be acid stomach problems due to the chemo - so will start some pepcid ac to see if it helps. Anyway, even though my markers are slightly down, my doc says at this point she watches them but does not give them a lot of weight - she will wait for the scan scheduled nine weeks from start of Navelbine.
Such a temptation to analyze every little feeling, pain, change that happens. I am trying not to do that and concentrate on living as fully as I can today. I am getting better on bringing mindfulness training to the moments of my life and being grateful for the blessings I have. Susie
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Tryn2staycalm,
I am sorry for what you have been going through, it is very frustrating to be bloated ant know the reason. I hope your doctor soon gives you the report and deal with you itchings and hives. Wishing you better days to come.
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I found out a few weeks ago that I have liver mets. I have been feeling fine but my MO does 6 month scans due to my history of recurrences. My liver showed up with 2 lesions and I was sent for a biopsy. The results came back that it was breast cancer and was same path as the other 3 times...Triple positive. I will start the chemo concoction of taxotere, herceptin, and perjeta tomorrow. It has been a long couple of weeks getting everything ready to start back with the chemo.
I have been encouraged reading through this thread of all you awesome ladies fighting this battle. I am trying to stay optimistic but as you all know that can be difficult. Just taking it one day at a time for now!
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Recently I learned that mine had spread to the right lobe of my liver. They are moderate sized and highly metabolic. Needless to say I feel discouraged. I am hoping that this chemo will put cancer into retreat.
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Baby and Dune. Hoping your chemo kicks these liver mets in the arse. I completed my second session last week and have my third round in 2 weeks. (Taxotere,Hercetin,Perjeta).
HUgs to you two.
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Best wishes Freygea. I know you are enjoying your break.
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Baby and Dune
I, like you have just started on the liver mets nightmare. This is my first recurrence and after 8 years of putting it all at the back of my mind it just feels like life has been turned completely on its head. I'm having just Abraxane at the moment, every 3 weeks and first treatment is behind me now and the fog just starting to clear. Full of lots of little aches and pains and niggles which you try to interpret but really have no idea what it all means. The worst for me has been swelling and discomfort in liver area which now seems to be resolving slowly with steroids. The worst thing over the last week has been all the long, emotional phone calls to friends and family back home in England as we moved from there to Australia recently. I think dealing with others reactions is often the hardest thing. Here's hoping that we soon adjust to our new lives as all the others lovely lacies on here seem to do so well.
All the best to you. Xxx
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So far I have not been aware of any pain or swelling in the area of my liver. Hopefully the chemo I started as a result of that progression will knock those lesions out. My first cycle is done, except for meeting with my onc. My hair was starting to grow. It's just growing straight up on the top, but not much on the sides. Any time now, the carboplatin should start the hair loss all over again. Oh fun.
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Babyruth,
I am sorry about your progression,mit always sucks to hear such news. However, your new combo is good , i hope it works for you as good as it worked for me . It got me to no evidence of disease, thanks be to God. Good luck to you.
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Dunesleeper,
I am sorry you have to go through yet another treatment and hope this one kick you liver mets. Carboplatin makes you loose hair , true but not all of it you will keep some. But it is very hard on the blood, white blood cells and red blood cells as well as platelets specially combined with Gemzar. If you feel extremely tired or bruise easily or feel faint inform your onc immediately. I had one blood transfusion during this combo, weekly neupogen , anemia and had to cancel twice because of low platelets and RBC . All the best.
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Isy,
Good luck to you on Abraxane with very few side effects. It is true it is hard to tell family and friends but right now you cannot worry about them you have to focus on yourself and well being. Concentrate on becominf well again.
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Freygea-How have you been doing on your chemo? Any problems or issues that you can forewarn me about?
Woodylb-So happy that you are NED. I hope I get the same results as you did!
Dunesleeper-I have not had any pain or swelling in my liver either. I hope it stays that way.
Isy-Sorry that you are having pain and swelling. I hope you can get some relief soon. I think telling friends and family is one of the most stressful parts of cancer.
Today is my first day back in the chair. I am hoping for an easy day with no issues. Thanks for all the support ladies.
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Baby, my first round I did fine until day six . I broke out in a rash on my hands. It looked like poison ivy but I had used latex gloves and to this day, I think the latex played a part in my hand rash. The doc prescribed me additional steroids for 2 days pre and 2 days post chemo and this round I still developed a rash but now it is more red and looking live hives. I wash my hands toooooooooooo muuuuuuuuuuuuch (retired R.N. bleh).
Fatigue was not that bad the first round (lasted about 3 days). This second round I still feel achey and tired and is day 8.
Now that I said all that- it still is not that bad. I went out and had dinner with hubby on Sunday. I am not sleeping all day long and am actually doing things to keep busy (so i do not cut my hands off..lol).
I am only telling you all of this so that you know to call your doc and ask for something if you note any sort of rash anywhere. (Do not wait like silly me).
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BabyRuth, I hope you had a good treatment and a good day.
Isy, now is the time, if ever there is a time, to put yourself first. Whatever it takes to get you well, and that includes reduced stress, is what you have to do.
Woody! Huge congratulations on becoming NED. I would love to see that on my own reports, but I will settle for seeing it has happened for you and other ladies here. It can be done. That's a great realization. Also, I have had to start neulasta. It really did knock down my neutrophils. I'm taking some supplements, hoping to keep the number high enough that I can get treatment. I was 1.2. It should have been 1.5. The doctor wanted to do the treatment anyway (thank God) and then had me come in the next day for the neulasta. Whatever it takes!
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I hear you dune sleeper! I'm tired of people bursting into tears on me whilst I'm the one holding it together. Mind you, eldest son is off school today with tummy grumbles and I'm enjoying being here for him, making him cups of tea and just made a lovely batch of soup fur us both. Energy levels coming back after last treatment though starting to feel slight tingling/numbness in the tips of fingers while typing this. Worried as I thought this happened a lot further down the track. Anyone else experienced this? One of the leaflets I have says this could be a sign of nerve damage, another says it should resolve within a week or so.
Woody, how long did it take you to get to NED and how extensive were your mets? Let's hope we all follow you down that path soon!
Xx
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Isy,
Feeling tingles at the tip of your fingers or toes is normal with your treatment , it causes neuropathy. Usually it is mild it comes and go. If it becomes too much inform your doctor. Walking helps and moving around.
To answer your questions, my mets were pretty extensive i have liver mets in both lobesaround ten of them at first with one about 2.5 cm then i progressed both in the liver and the skeleton . I had mets from the middle of my spine all the way down to my right hip and the tip of my femur. However my situation differs, i had 6 months of carboplatin +gemzar which shrunk my tumors by 20% and stable. I took aromasin during the summer which led me to progression to bones and liver. I took xeloda during this time it didn't work for me as it gave mixed response . My doctor started to talk to me about palliative care. But something great happened after two negative FISH for HER2+ i got the results of my genetic testing as you know i got positive results. So i started another treament for her2+ plus taxol.
With this combo after three months my PET showed clear both in the liver and bones as well as the second PET after three month. Now i am due for scanning in August and hope my stauts did not change.
Usually onc do not scan before three cycles unless there is a need. I hope your treatment will show the same results after three months. But remember also with stage IV stable is good. The most important thing is to containthe disease so it won't spread somewhere else.
I am glad you are enjoying your time with your son and wish you few side effects and a great response. Be patient loll.
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My goodness Woody you have been through some really scary times but what an amazing outcome!! So pleased for you and long may it continue. before I had the HER2 test my MO said "I would love for you to be positive" as that very week they had authorised a new treatment in Australia for HER2+ and it had proved very successful, sadly for me it wasn't the case.
He did actually call me this evening to see how I was going one week post treatment. impressed with that service (didn't get that in England!). He sounded even tierder than I was too. Discussed the tingling fingers with him and he said exactly as you said, and that hopefully it would resolve over the next few days. It's freezing here too which doesn't help numb fingers and toes!
Enjoy your weekend everyon
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Pathology back- tumor in my liver was cancerous. the type of tumor was different than before. It was determined to be ER-, PR+, Her2+. I have never been PR+ before. My oncologist wasn't exactly sure if it was because of the change in testing facility or not. In the end, it was decided to keep me on the xeloda (to treat my other tumor type) and to change my targeted therapy back to Herceptin infusions. Good news is that I am not giong to go on prejeta at this time. We can add that if we need later. so overall a pretty good news I guess. My big worry now is that my heart holds out. Prevously I ran into problems with the Herceptin and it had to be stopped before the year. Hoping that with my heart meds, a few years recovery and being in better health that I can avoid those problems.
also because I have had a day to digest and am working very hard on reframing I am looking at myself as NED again since the rest of the scans were good and they just cut the only tumor out, I am visualizing NED. I am thnking the change in medication is to keep me there not to get me there. Reframing.
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Isy,
I am so happy you have a caring oncologist, this is very important. Also keep your feet warm as much as you can to lessen neuropathy symptoms.
Thank you for your wishes , i hope and wish the same results for you and all the ladies on this board.
Enjoy your weekend
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Leftfoot,
I am sorry about the resection results , but happy there is a solution and treatment. Is the tumors related to breadt cancer or it is a totally different cancer?
How are you recovering from surgery? I hope you recover well and are able to restart on herceptin.
Wishing and praying for a speedy recovery and a complete response to treatment and surgery with NED peaking and entering your doorstep.
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Woodylb- It is unfortunately my breast cancer that has mutated some. so it is considered a recurrance. that said, I am glad that I have options, that it was the only thing they found when I was scanned head to toe last and that I have many treatment options.
I am still sore but not taking pain meds. I am up and around doing mommy things and was able to see my son play soccer tonight. Miletone for him as he hasn't played in 9 months due to a back fracture. At one point we scored and I cheered. I am not regreting tha but so totally worth it. I am sure I will be fine in a bit. I am looking to find house help since I can't lift anything for a bit. but other than that everything is ok.
thanks for asking
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NED it is leftfootforward! And that's a wonderful thing. May you stay there a long, long time.
I think I just caught a cold, and it is my first since starting chemo. Does anyone know how that can affect chemo treatment. Fortunately, this week (Monday) is my week off. I just go to the onc that day. However, colds linger. I'm taking lots of vitamin C. Well, anyway, just wondering if anyone has any experience to share with me.
Be well, feel well, do well.
Charlene
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dunesleeper- they probably check your blood counts before therapy. If its just a cold you are probably fine. Most likely you will have to wear a mask or will be placed in an isolation room so that you don't infect any of the other patients there receiving treatment. I had several colds and this is what they did with me. Thats my best guess anyway
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I wonder if anyone can help. I have just finished 8 weeks of taxol...ie 8 infusions. The scan after that showed shrinkage which was good.... It is in my liver..extensive.... But one week later all my liver function blood markers have risen. I am worried taxol has stopped working after 8 weeks. Has similar happened to anyone ie liver tests rising but cancer still shrinking whilst on taxol? Please help x
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Torridon, specifically, which liver tests have risen? I have heard the AST/ALT can go up when the body is breaking down the cancer. I don't think that applies to bilirubin, alkaline phosphotase though.
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all have risen apart from bilirubin..... Alt, alp, ggt and the non specific tumor marker LDh. Surely I can get more than 8 weeks out if taxol?
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G'day sisters, I've been meaning to post to this thread for a while but I mostly use my tablet these days and it won't let me register on BCO, no matter what I do.
I celebrated 20 yrs of BC in May and was dxed with bone mets 6.5yrs ago,am currently dealing with liver mets for nearly two years. I have done Abraxane, Xeloda, Tamoxifen and just three months of CMF this year. I started the CMF after having a right hip replacement in February, the arthritis in my hips was apparently caused by 4yrs of AI's. I did three months of infusions before stopping to have my left hip done five weeks ago. I was told that I would start CMF again a month after the hip was done as I wouldn't have much immunity to infection with the meds in my system.
So....I had a whole body scan and one of my liver before my appointment with the Onc last week thinking that I would probably be continuing the CMF regime this week. Well, was I in for a surprise. I didn't get my usual Onc whom I thought was some type of student/intern because he would scurry out of the consultation room whenever he didn't have an answer....he was also from another country as it was quite hard to understand what he was saying at times. This Dr last week was an Aussie who had been brought from Victoria, two states away for three weeks as a fill-in because our state seems to have a shortage of Oncs. I didn't have a problem with understanding him at all.
One of the first things he told me was that I only had Navelbine left in my arsenal against this disease and it's not very good at what it should do. I asked about a new tx that started with 'K' and he said that the first patient he tried with it, died on him, so he hasn't used it since.
I then told him that I had scans done before this visit because he was shuffling about in my file like he hadn't seen it before, which he probably hadn't. Not that there was much in it as the hospital lost my whole 6.5yrs-since-mets-dx-file three months ago and it hasn't been seen since. I'd say it only held information about my last two CMF treatments and the prescriptions for them. Thankfully, the pharmacy had that info on their computers so I didn't have to go home without any tx at all that day.
I was a bit worried about the scan results this time as I hadn't had the full CMF regime and it had been slightly stop/start to say the least. I had no real symptoms as such other than a sharp twinge under my left rib occasionally, which I told him about after he asked me how I felt generally speaking. His answer was that he doesn't go by scans and tests so much, he much prefers to see how the patient is feeling physically. He probably wouldn't have even opened the computer file from the Radiologists diagnostic report if I hadn't asked him what it said. He said that there was a bit of progression but nothing to worry about.
Anyway, I have to go back again in a month for another Onc app't which I sincerely hope is nothing like that one. I left there with the distinct impression that this dr was filling in time until he retires or he is burnt out and took for himself a paid holiday in our sunny state at the expense of all the ladies who trust people like him with their lives.
I am going to see my GP this week to ask her if she can print out copies of the scan reports for me so that I can actually read them myself after she verbally translates them for me into patient language.
This whole episode leads me to believe that as I am seen as incurable by the medical system, they aren't too interested in treating me anymore....that as long as they treat me with something or other, they will be seen by me as trying to 'cure' me.
Not good enough, I say and I will be questioning whomever I see next time.
Sorry about this post but I needed to get it off my chest so to speak.
Sheila.
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so sorry sheila. Talking with your general doctor to get a better picture sounds like a great idea. Ihope she/he makes you feel more listened to and better.,
Hugs to you., come here anytime you need support
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Hi again ladies,
I am doing a bit better now with less complications. I see I have missed lots and sorry to see that some have progressed. I see how supportive you all still are I still think you are a wonderful bunch of ladies. I too had to get held back due to low counts. Can hardly wait for next scans. Thinking positive. Improvement noted with lungs first now some with bone pain and praying for the liver next.
Cathy
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hi everyone.
Trying tocatch up as been on a fork road b/c of 4cm lesion in dura. Had a brain MRI in July to see if changes from May to july. No change and they think b9 mennigoma. Last week spinal tsp and headache continues. 😖😖😖 should find out tomorrow if I can put head lesion to bed. And lock the door. 👀👀
Ask your onc about Lxempra for chemo. I believe used when taxenes fail. There are three of us on it and there is a thread. This is my 2 nd chemo as taxol worked for 10 months then liver lesion 2.5 cm. and TMs elevated.
I am currently getting # 4 lxempratoday. My onc preferred to use this rather then then Gemzar or navebine and keep those and other chemos for later. My Tx has been Femara , taxol 1 every week for 3 and one week off. And know Lxempra. It seems not a lot of peeps on here have gotten Lxempra. Will have scan in a few months. All blood work is good right now.
Google and look at studies. It doesn't affect kidney function badly but can raise liver function tests and alkaline phosphate. I feel good about this chemo. 1x@3 weeks. The third week I feel pretty good. The weekly taxol kickef my butt.
Time to get unhooked. 👍👍
Oh you get neulasta shot dsy after infusion of Lxempra. Protocol.
Best to all
Diana
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Sheila,
I am sorry you had such a bad luck woth oncs. Talking to you doctor will certainly help but you need to get yourself a good onc who can treat you right and listens to you. Other than that you can come here and vent anytime you like we are all ears and sometimes god advice.
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Torridon,
It is not necessarely progression if your liver enzyme went up, it could be some medication you are taking, some pain meds do that, statins and others. Are you taking any new medication?
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tryn2staycalm,
I am glad you are feeling better and seem to have passed the bump. Widhing always good health and good response
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Woodylb, our health system doesn't allow for us to pick and choose which Drs we would prefer unless we go private and being pensioners we can't afford to pay for all my treatments so we have to use the 'free' health system our government takes out of our taxes to provide.
Also, we live in a small town a long way from any major hospitals which do have a larger selection of cancer specialists. My stress levels would be out of this world if I had to travel with my DH driving for hours. He has issues with depression and the meds for it which have sent him a bit loopy and he totally ingores all the road rules, signs and lights, because he can't remember them or the way to go down the road. Believe me, I have been forced to become the world's best back seat driver for the last three years...I could back seat drive for Australia if necessary. I even use hand signals inside the car to tell him where to turn. Satnav Sally has got nothing on me.
Sheila.
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Sheila,
I am sorry i totally forgot about the health system in Australia
. Cancer treatments are very expensive everywhere and living in a small town away hours from a big city does not help either. Which leaves to do the best with what you got. Just be careful to be treated adequately so you won't suffer consequences of bad treatments. Your description of how your DH drives is both funny and scary lollll you are better off staying where you are. I hope talking to your generalist will help you and gives you satisfaction.Keep us informed and be well.
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Hi everyone, I have a question about liver pain. My mom, due to major progression, changed her chemo from taxol to Gemzar/Cisplatin. The plan is to do 3 cycles of 2 weeks on and one off of the combo. Her first cycle is over (so she's had 2 weekly chemos). First week she did not have any side affects but the liver enzymes (which exception of bilirubin) were extremely high and off the charts. But after the second week she started experiencing severe abdominal pain, particularly when she breathes. The onc saw her yesterday and felt that her liver is very enlarged and asked her to do semi-weekly ultrasounds (starting tomorrow) along with her weekly blood work. Depending on the results she will decided what to do about her chemo that is scheduled for next week. I am soooo worried because I've read that when you are at the point of having a lot of pain in your liver that it is not a good sign. Has anyone experienced similar pain that then stabilized? Thank you so much.
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fhaido....I'm sorry...both for what your mom's experiencing & my having no sound advice. Even when I had extensive mets & my onc could feel it enlarged, I didn't have pain. Maybe others will have advice, experience. I know when my enzymes were elevated, my onc said they probably messed up handling blood in the lab...That made me feel better for about 30 secs. Normal bilirubin is good. I read so often that pain can signify tumor death, and it will take a while for tumors to shrink, so I would think it not unusual for onc to still feel the liver enlarged. Ultrasounds will be a good, non-invasive way to see how treatment is going...and ask fog pain meds if needed. Prayers to you & Mom :-)
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Fhaido,
Hello again, i am sorry about the pain your mom is experiencing. However, I , like RonnieKay never experienced any pain except a little when i started my last combo and it was minimal and no change in Enzymes. I am sorry i cannot offer this much help here. If i remember correctly your mom had also have cirrhosis , i don't know if this could be the reason that the liver is enlarged with high enzymes. But the fact that her billirubin is not high is good, it means that the liver may be over worked but not damaged, at least this this what i know. An ultrasound is a good idea to see what is going on and how the treatment is going. I hope the pain is a signal that the treatment is working . Still inforn her onc for the pain , for some pain meds to make her feel better. Prayers for you and her and hope verything will be sorted out soon.
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hi Fhaido
I have just been diagnosed with liver Mets and it was the pain and swelling that took me to the doc in the first place. It hurt when I breathed, sneezed and I had referred pain in my right shoulder. The onc told me the liver can't actually feel pain it has no nerve receptors but what I was experiencing was irritation (bit of an understatement!) and a signal to my body that something was very wrong. Initially we tried anti-inflammatories which didn't touch it so on starting chemo I'm now taking a daily steroid tablet (dexmethadone) which has really reduced the swelling and pain is just the odd twinge. I do feel a whole lot better. I understand that you can also get a lot of fluid build up in the liver which would also cause a lot of discomfort. Sounds like your mum is getting closely monitored so hope they can resolve it soon
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Thank you so much Ronnie, Woody and Isy for your comments! I will keep you all posted - after her ultrasound and blood tests we will know more... Isy, it sounds like you and my mom have experienced similar pain. She is going to ask her onc for steroids if the pain doesn't get better. Thanks again, you are all in my prayers
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Just got back from having an echocardiogram, EKG and meeting with the cardiologist. He approved my oncologists decision to start me back on Herceptin. I will remain on the same two heart meds at teh same dose for now. My heart is basically back to normal. My only problem is that he really felt it was the Herceptin that caused my heart damage in the first place. So I am not feeling really optimistic right now. Actually, I am quite afraid. I am not on perjeta because it adds to the cardiotoxicity. So I am very fearful that my heart won't hold out and I will lose a whole bunch of options for future treatment. I know my fear will get better once I have had a litte more distance from this appointment and I start my Herceptin treatment again. I just wish that I could see the bright side of things. But because of all I have been through, I automatically think about the worst case scenerio. It just sucks. I am good at reframing things, but this just serves as a reminder of just how much damage this disease has done to m psyche. Againk I konw it will be better soon. I will be able to remember that he said my heart does bounce back (which means that I can take a vacation form the drug and go back to it again). and he thinks we can manage it if my hear function does drop again. he stated the obvious in that treating my cancer is highest priority. I agree. So overall good nes, just hard to stand up and say hooray. Monday I will get my first Herceptin treatment since March of 2012. May it wok its magic.
thanks all
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It sounds like you have a good, smart team, leftfootforward. I hope re-starting herceptin will go smoothly and that you can get some relaxing, fun time in and forget about your worries for a while.
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Leftfoot,
I am glad you are feeling better and that you are restarting herceptin, hoping it will keep your cancer at bay. Sometimes we have to choose which is the best of the worst. I know you are worried about your heart , but i hope the break you took made your heart well again so you can resume treatment. From what i understand , usually it is reversible , if it was caused by hercepetin . Last week when i did my echocardiogram , my ejection force showed a drop to 45 . My doc said the heart is good and responded well to stress , the vuvle is good and i have good reserve. But he prefers for me not to use my reserve. I have been on two keds for a month tritace 2.5 and concor teice daily. So we are stoping my next dose of HP till August , we repeat the test and if it is good , i am restarting HP.
Take a deep breath , have faithand hope all will go smoothly. Keep us posted. Prayers.
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Good luck leftfoot. I think being able to stop and restart the drug if any heart issues arise is very comforting. Of course, it isn't me going through it. I can send virtual hugs and prayers, though, and hope that brings you some ease.
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Ahhh Leftfoot...this disease definitely can test our bright side...I've found that so even in the best of times (using that term loosely). I'm remembering a few really tough things you've faced lately...and we've cheered good results. I'm hoping and praying that your heart will recognize herceptin & maybe have developed a way to resist it's damaging effect...kind of the vaccine effect! In any case...I applaud your doctors working together to find the best way to keep you strong & stable!!!!
Isy...welcome to our place of support & love.
Woody....Of course your heart is good!!! Glad they're keeping the reserves full :-)
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Leftfoot - You heart doc has your best interest in heart as I am sure your MO does. Let them do the worrying for a bit and try to have faith. We all know that at times that is hard but sometimes it does help us to relax and let the doctors do their job with your best interests in mind and staying positive is known to help. I know easy said but not easy done. However you have a wonderful bunch of ladies to support you. Me included I hope if I can. Best of luck to you.
Fhaido - Sorry about your mom but yes I have felt discomfort in my liver also and will find out soon if my Taxol chemos are working. Occasionally I still feel something but of a twinge but prior I couldn't seem to bend over for any period of time without terrible pain. Hope that gives you hope!
Cathy
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Leftfoot, it looks like you are in good hands. Hoping that your heart is strong again and will do well with the next round of treatment. Praying for you.
Cathy - thanks for giving me hope. The pain is a little better and we are hoping it only gets better with the new chemo. Lots of love to yo
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I have apparently failed Ibrance/Letrozole combo. My liver mets grew-doubled- in three months. Onc is starting me on Xeloda. Has anyone had any luck with this drug in beating back liver mets? My bone mets that are throughout my spine seem stable. Liver is not happy.
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As I try to read through this huge thread (skipping around a lot) I'm getting REALLY discouraged. I was stage IIIa, ER pos, Her 2 neg, Pr neg in 2002-2003. I did 4 rounds of A/C and 4 of Taxotere and 33 rads and was on Arimidex 5 years. "Cancer free" for YEARS. Then in June 2013 my cancer came back as stage IV in the bones only. Dr. put me back on Arimidex, worked for 10 months, took TM's from 898 to 200 range. Then on to Aromosin/Affinitor combo, worked for about 6 months, TM's went to 300 range. Then Faslodex this May, TM's in 400 range. Came back from vacation in mid July and had TM's done. 1142!!! So Dr. cancelled Faslodex, I had a medport put in yesterday. now chemo starts Monday. New Pet Scan this week showed 1 spot high on the dome of my liver lighting up, and multiple smaller spots not lighting up. Some bones lighting up again. He's going for Carboplatin/Abraxane, which no one here has had in that combo! 3 weeks on, 1 off, indefinitely. I asked about operating on my liver, he said it wouldn't work (I guess too many spots?). I haven't seen him since May, and won't until the end of August. Now I read here about liver biopsy, which he's never mentioned. About things "changing". What changes? From ER pos to something else? From Her 2 neg to positive? What are you guys talking about changing? And if he won't do a liver biopsy, what's next? he's been my trusted onc since 2002! What is liver ablation? I'm having zero luck finding anything out. I'm just getting ready for my chemo the day after tomorrow. And I just read to "insist" on a liver biopsy BEFORE chemo? That will take forever to schedule!!! And delaying chemo could kill me. I mean I was ONLY bone mets with TM's of 400 in May and then 2 months later I have liver mets and TM's of 1142? This is going FAST for me. I'm 56 and in decent health otherwise.
HELP. What can change? Do I HAVE to have a liver biopsy first??? I don't want to find another oncologist. Around here, there is ONE group in my city and ONE group in the next largest city and they are ALL under the same big group! ONE hospital swallowed up 2 other hospitals years ago and took over ALL the doctor offices! So going to another onc will solve nothing. They will not disagree with each other. I would have to drive 3 hours to find the nearest large hospital, which is Duke University. I'm in North Carolina near Charlotte now. A 3 hour drive every week is just not financially possible for me and my husband cannot take time off. I have NO ONE else to help me. I am currently on disability from work because of the terrible pain from the bone mets. I wear a Fentanyl patch of 25 mcg 24/7 -
Wandering...I'm wondering why, with having progression & moving to this combo, your onc hasn't seen you?? How/who relays this info to you? Yes, if you have liver involvement, you need it biopsied. Woody will give you info on this..she's shared with others. Her tumor makeup changed to hr2+, which added new tx options! Share the info you get here, it's totally relevant!! Yes, every body & cancer is different, but make your onc explain & justify everything & if you need to go to Duke for just a consult...you may need to. I'm sorry to sound bossy, but we all want, need, trust that we get the best tx possible. Hugs!
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Sandilee, I'm very sorry to hear that Ibrance + letrozole failed you, and I hope Xeloda does the trick. Were they able to biopsy the liver?
Sometimes a liver biopsy is too risky. (For what it's worth, my onc recommended against a liver biopsy because of my particular situation, and chemo did zap the breast tumor and the liver mets.) You need to get your questions answered, WanderingSpirit. I think a second opinion from Duke would be valuable. Does anyone out there have an idea of how to get an appointment fast? And doesn't the American Cancer Society have a program to provide transportation? This kind of thing is so hard to deal with, especially if you aren't feeling well.
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I'm new to liver mets so have little to add. My onc did not suggest a biopsy; she just got chemo started right away. Aftrr 2 cycles an mri showed it had spread to my liver so we got right on a different chemo, and it seems to be helping, based on my huge lymph nodes being practically flat. God willing, it is doing the same to my liver, lungs, and bones. My treatment is Gemzar and Carboplatin.
My onc sst me up for a 2nd opinion at johns hopkins. Hopkins called last week and I was out, so I will return the call Monday. I suggest doing it that way. It seems to be going fast. I'd have an appointment now if I hadn't stayed out with my friends so long.
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Wandering,
I am sorry for your progression , liver and bones are very much connected. If your bone mets were rightly controlled it would not have gotten to your liver. It is wrong to start you on a combo without biopsy to the liver. Because once you started the chemo , they will not be able to get good resutls or accurate ones. Cancer mutate yes, some don't but a lot do. If your cancer status have changed then you may need a different treatement.it may change from ER+ to minus the same for PR and HER 2 status also. I really think something is wrong when you are progressing so fast and you have notseen your onc since May. This is not good nor responsible from his side. Who is relating all these info to you? Not getting your chemo before biopsy is really bad. YOU MUST INSIST on one. It will not kill you to wait a little. Your onc should help with the appointment. Getting a second opinion is beneficial for you , because it may save your life. My cancer is ILC which is usually ER AND PR positive , the first thing my onc asked is for a biopsy.
Eventhough i had extensive mets in both lobes, we waited the results then started on a treatment. My her2 became equivoque, my ER WENT DOWN TO 60% my PR went to zero. So i took the specimen to another center and had sent abroad, while being treated (which was failing) after six months i got the results from abroad that my status on HER2 was deffinitly positive. I was running out of options and my tumors were barely controled , i had progression to my spine, hip, and some other areas. So i was started on her2 targeted therapies plus taxol. Since januray i have no evidence of disease anywhere in my body. I hope it continues now i am only on her2 meds plus nolvadex. My next PET is in august.
So as you can see biopsy is important , you may not get the results you want but i will surely give a map to your doctor on howto treat you. Ablationand all these procedures are not suitable for all metsters specially when the liver is envolved. Very few havesuccesful results on them. Some of these ladies here did it but after a while another mets popped out. If you are not cnadidate for it i advise to forget it.
I realise it is hard to do all this on your own with no one to help, but you have to do this for yourself. You have to be able and aware of all your options and everything should be explained to you. All the alternatives discussed. It is your right.
I wish you the best of luck and i hope you soon biopsy and get started on your treatment which i hope would be a successful one. Praying for you . Please keep us posted .
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Sandilee,
I am sorry for the failure of Ibrance and femara. However, xeloda is not a bad option. It has worked wonders for some and didn't work for others. Someladies here were on it for two years while others less. For me it gave me mixed response , some mets were stable on it while others progressed. Side effects wise, you have to watch for neuropathy and diahrrea . It caused me constipation lolll my onc said it is unusual. The effect is cumulative you on't feel much the first two weeks. It is woth a try , it isa good med and i hopeit works for you for a long time. Good luck.
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Sandilee I was on the drug trial (Canadian) for Ibrance/Letrozole and it also failed me yet it has done wonders for some. I had great hopes and was terribly disappointed when it spread to my liver then later bones which yes are very painful. I have no experience with Xeloda. Hoping it does wonders for you.
Wandering - I have same mets to lungs, liver, bones. I am now doing Taxol chemo and no I did not have a biopsy either. I seem to think some things are done different here in Canada or other countries than U.S. I do trust my MO and I know how caring he is. However reading what Woody has offered makes me wonder also. So far 7 weeks in and my lungs have shown improvement and now bone pain is lessening also. Taking both long action and short action hydromorph cotin. Praying for same to liver. Wishing you the best. I know how scary it all is.. hugs.
Cathy
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Hi ladies... Quick question... I have been on Ibrance+Femara+ once a month Zoladex shot since late June. Did pretty good first cycle with little to no SE's. Yesterday I noticed my hands looked jaundice and they are swollen. Having a little pain or twinges in the liver area... Should I be overly concerned??
Monika
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Monika, the little pain in the liver area is normal, it happens with treatments but the yellowish hands and swelling is not. Inform your doctor, he may require some blood tests. I hope all is well.
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Sandilee- I have been on Xeloda for almost 3 years and was no evidence of disease until recently. It has lots of various SE but all are managable for the most part. Check out the Xeloda website for more information or PM me and we can discuss it. I acutally have enjoyed me time on Xeloda and was glad when I was allowed to stay on it.
Wandering- I am sorry that you seem to not have all the information that would/could put you at ease. I think liver biopsies are good to determine if the type of BC you have is still the same. But, depending on where your lesions are located and how big they are, this might not be possible. If this is the case then delaying chemo any further would not be worth it. And I will say that the first time I had my liver biopsied, they did not get any diagnositc cells. I had to go back a week later for a second try. They were successful that time. so it is true that even if they biopsy it, they might not get the information they need. I would try to see your doc or talk with someone else as your new diagnosis is a big thing. And the first time I was diagnosed with liver mets, I had too many for the liver specialists to do anything about. disappointing. I had almost 3 years without any more liver mets before a solitary one just poped up. This time the liver specialists said they could help me. I was given the choice of ablation or surgerical resection. In ablation, they stick a needle( or a few) into the tumor and use microwaves/radiofrequencies to heat it up and blast it apart directly. Once is has been ablated there is nothing left to biopsy. They can try to do a biospy before hand but it is not guarenteed as they have to place the ablation needles first so might not be able to place a biopsy needle. And Like I said, once it has been ablated it is gone. So if you dont get a good sample, you are out of luck. Sometimes ablation is not recommended say for example the tumor is larger than 2-3 cm or is too close to blood vessels. Ablation is localized to the tumor itself so has its benefits such as recovery time and amount of tissue lost. Surgery has a longer recover and normally involves a hosptial stay. With ablations you can go home on teh same day sometimes. I went with surgerical resection to ensure I had a good biopsy. It was laproscopic so not a bad recovery ( two days in hospital, off pain meds withing 2 days, and on vacation with kiddos after 10 days). Everyone recovers differently so I might not be the norm.
anyway, I hope this helps answer some of your questions. I am sorry you are going through this. It is scary and you are right to ask the questions. We are here for you
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wandering--I can get you names and numbers at duke or unc. Pm me if you want.
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I'm new here and live in Chicago. Anyone from my area? I was recently DX'd end of May with numerous liver Mets and also in my bones. I went straight into chemo. My first MO had my on Taxol H & P. I changed MOs and my 2nd and all subsequent chemo is TCHP. So far I've completed three rounds total of chemo and had my first set of scans which showed significant decrease of liver mets and shrinkage. My enzymes are back in normal range too! My MO seems encouraged that treatment is working. Anyone else gone down this route? We are hoping for the best response possible. I suspect 6 rounds and don't want to do more, it's toug how
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Jahaage - Welcome, actually from Ontario Canada here. And woot woot for the regression. I'm doing Taxol now #8 of who knows how many coming Friday. Noted improvement on my lungs and some bone too (less meds to hold) and praying it will continue on to liver mets. For us ALL!
Cathy
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Jahaage,
I am sorry you have joined us here, but you are welcome as a member of the kindest community. Yes some ladies here did the same treatment as yours including me. We got very good results on this regimen. Six months is the usual treatment and it depends on the kind of results you get. Stopping completely the whole treatment is not an option in stage IV . They may stop your chemo for a while but not Herecptin/perjeta. You have to stay on a maintenance course. Hoping you get the best results on this combo and stay well. If you want more information about this , there is a thread here entitled taxol/herceptin/perjeta. All the best.
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Hi All. Well chemo could not be delayed so I had my first chemo of Carbo/Abraxane this morning. I remember I DID see my dr. in June, I forgot about that. And the Pet Scan was in April and fine for the liver. Dr. wanted to give Faslodex a chance to work in May,June and July and I had a long vacation planned from June 28 to July 6. So I told him to wait on the PET scan till I got back. My mistake. He did the TM test the week I came back in July and the markers were so high he called me himself and told me he ordered the PET for that same week. So he got right on it. Then he called me himself about the PET scan. He was very honest and I asked if he could operate on the liver and he said it wouldn't do any good because I have multiple lesions, one being pretty big and very active. Well today the chemo nurse got the PET results and I read them. So now I know. It was very scary. I have a 1.1 x 1.1 lesion that is "intense" and "avid" high on the dome of the liver (this is all from the Radiologist). I have another 1 cm lesion on another section of my liver. And on the back side I also have a 8 mm lesion. Those 2 are not "FGD" which I was told tonight means not active- yet. And apparently I have more than that, that are too small yet. My oncologist said this was not "sudden" like I thought. Because my bone mets kept lighting up and my TMs kept rising despite all the hormonal treatments, which he wanted to try first to not "burn out" all my chemos too soon. I had the onc. call me tonight. He explained that the lesions were probably there and not visible last PET scan in April and this was not as rapid as I believed. And that only 1, the big one was "active" which was called "avid". The other too, FGD, he says means not lighting up. He said he had to start the most aggressive chemo he could right away because not only was my liver lighting up, the report that I read also said I had more bone lesions that HAD been calmed down, lighting up again, some pretty bad. The bad ones were neck, upper left arm, upper left thigh, and Sacrum. I also have had some that aren't lighting up again in my spine, ribs, skull, pelvis, and I forget where else. In other words, my bone lesions are extensive. He answered all my questions and I know he's doing the best he can. I called when first DX'd to a "hot shot" dr. in Charlotte that is in the same big group but in another hospital. That one reviewed all my charts and told me that my dr. was following the protocol he would. So Duke would be the only other option. However, I have now had one chemo done.
I forgot all about asking him about if my cancer has changed. I will call back tomorrow and tell them to check however they can. Maybe one of the posters is right (I'm sorry I got lost in your names, I'm fuzzy now) and they can't biopsy?
Crap. I forgot. My pleural effusion on my right lung that I had at the beginning and they drew off (almost a full liter with cancer cells in June 2013) now shows a slight increase too. And I have a slight increase in my pericardial effusion. The onc. had a cardiologist look at my heart early this year and he said he didn't think the peridcardial effusion looked cancerous on the tests. The onc. tonight explained about my pleural effusion,he said yes, I do have the cancer cells in the lining, but NOT in the lungs.
So I guess, I'm a mess. And it's my fault for ignoring all those aches and pains in 2012 when it probably came back as stage IV. I wasn't honest with my onc on my visits. I kept thinking it was from "old age" or arthritis. Stupid me. -
Wandering/ hang in there. And please don't blame yourself. Cancer is sneaky and hides so well. That's why it's called no evidence of disease. Just because you can't see it doesn't mean it's not there. So please don't blame yourself. You are in the thick of it now but you have a plan. Sounds like your team has thought everything through. Andre like to think that some of those small rumors that didn't light up might be dead thanks to your previous treatments. Ice been working on reframing things. I was told the first time I had liver mets they couldn't help me. Medd worked and the second time around they cold.so I have hope for you. One step at a time.
Hugs
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WanderingSpirit, please try to let go of blaming yourself. You did the best you could. Move forward from today. You are doing what you need to do by getting this chemo. It's ok to relax and let your doctors take the reins and manage things. It sounds like they are on it. Maybe you can pick out some music you like to listen to during your infusion, collect some makeup or scarves if you enjoy those things, plan a visit to a botanic garden, or whatever will mean treating yourself kindly right now. Think of us bco friends when you are in the chair. We are sending you loving thoughts.
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Hey all,
I'm newly diagnosed with a single liver met--been Stage 4 and NED since 2011 when I had a single sternum met removed and did six rounds of Xeloda. I have a PET scan Thursday and I see my onc on Friday. The biopsy says it's no longer estrogen-positive, and I've been HER- since the beginning although i know that can change too. This waiting stage and figuring out the treatment is so hard! Today is the day I get to talk about this all day on the phone--oh, joy! Normally I have an excellent attitude but this morning I am PISSED. At the same time I believe that God is still God. Just feeling massive fear and sadness. I know our thoughts and mindset are so important but HOW do you turn off the dark thoughts and move forward?
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Super13...oh boy...I think we can all relate. This disease is so nasty. You're right...the waiting is the hardest part (isn't that Tom Petty...for the younguns, he's a singer..lol). My guess is you'll have vital info today...then you can move on & start blasting tumors. To know you're doing what you need to do to live helps occupy the space where sadness hides. There is hope...we'll want to hear your tx plan.
Wandering...wow..thanks for all the info. Definitely sounds like you're being well taken care of & I'm sorry that I was worried about your dr being an absent team player. Ditto to what sisters say about the guilt thing...just isn't valid! This is the most sneaky, crummy thing known to mankind! You've got lots to focus on now...and we're all here to watch you send tumors packing. My onc told me my liver mets were slow growing...which seemed odd because in 6 months time, my tumors went from not visible to 1-8 cm. Who knows what's cookin in there. I'm hoping your ses will be mild to all parts of your body except mets!!! Stay strong & we're with you all the way :-)
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Thank you all so much. I called my onc back today and talked to the nurse. She spoke to him (he's on call today and super busy) but answered all my questions about "status change" and the nurse wrote it down this time,lol. He said when I was first Dx'd with mets in 2013, they drew fluid from the lining of my right lung, almost a liter. The cells tested were exactly the same as they were when I had breast cancer and a breast tumor in 2002. ER+, PR-, Her2-. And I had lesions all through my bones at the same time. So I really had 2 mets back in 2013! He said when mets first appear that's when status usually changes and that's why he hasn't tested the liver, which is brand new. He said it's unlikely my status would now change after having pleural effusion and bone mets. And that he didn't want to put my liver and body through a biopsy that wouldn't do any good and instead could harm me. I'm 56 and the mets are now in my pleura, bones and liver.
But he is glad I research and question and will always answer any question I have and discuss treatments and options with me. I feel much better now. He's on a well deserved vacation next week, and I see him on August 17th so I can wait. He said if I have any concerns while he's gone, to tell his nurse and the on call dr. can help unless it can wait till he returns. He's in his 40's and a former Army doctor. His specialty is hematology oncology but he's a whiz at breast cancer as well. He gave me many years when I was stage IIIA back in 2002 that no one expected me to have, by the way he treated me.
I'm also on edge because most don't know me, so you don't know this. I have 3 wonderful children: a daughter who's 30, married with 3 children (my grands) ages 1, 3 and 5. A son who would have been 23 in May and a daughter who turned 21 in May. I love them all dearly as they are the best children you could ever ask for and the nicest, kindest people you'd ever want to meet. They were with me during my first cancer, I was a single mom for 9 1/2 years before I remarried in 2011. Last year, my son and youngest daughter who were both in college moved out together into a house their father, my ex, rented to them. Well when my son was 22 years, 2 months, 3 weeks and 6 days old, on August 1st, 2014, he had a terrible accident when he was home alone and passed away. This Saturday marks one year since he went to Heaven. He is my heart. He is a great son, never gave me a minute's trouble, and was graduating college in December with a degree in Anthropology. He was going on to get his master's as well as work for the FBI. He had 2 classes to take in the fall, just 4 credit hours, and they were electives. Instead he never made it. The university awarded his degree posthumously last December under the provision they have for this. If a student has good grades (he was 3.6), and is so close to graduating (he had completed 116 of the 120 hours required) and was in good standing (his professors praised him), they award the degree. His father and I accepted on his behalf. He earned every bit of that degree. That's not the reason I miss him, not for his intelligence which he had in abundance. I miss him for HIM. He is the kindest, sweetest, most loving, most compassionate, funniest, wittiest, finest man I have EVER known. I will miss him every second until the day I die, when I know I will see his handsome, smiling face again.
So excuse my nervousness over this stupid liver mets thing. I have already endured the worst thing anyone ever could. I am not saying this to get sympathy, but to explain my jumpiness, and to honor the best man I will ever meet, my son Josh. So this cancer is really "no big thing" in the scheme of my entire life now.
Thank you all for your kindness.
Wanda -
Wanda... Your story brought tears to my eyes! I will definetly be thinking about you especially on Saturday! I admire your strength and can't begin to imagine what you have endured. Prayers for you and your family!! I am sure Josh is resting peacefully with God and looking after you!! Hugs!!!
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Mdillard04 thank you so much for your kind response. I really appreciate your prayers for us all as well. One year is seen as a "marker" so often, but when you lose a child, one year isn't the end of a mourning period and grief. The mourning and deep grief never stops. I read that as much as you love someone, that's how much you will grieve their death. So this means my grief is as endless and as deep as the love I will always have for Joshua. I bet Josh is pretty busy in Heaven and I bet he's checking in on me too like you said. Thank you again for thinking of me and your prayers.
Love and hugs,
Wanda (N.C.) -
Wanda ... so very sorry for your loss.
I'm beginning Taxotere next week after Gemzar failure ... major progression in my liver. I was on Taxol for 11 mo back in 2013-14; but, understand this is a tougher one. So I welcome any experiences & tips you can share. I'm getting weekly doses along with neupogen, which I've never had. I have the claritan ready.
Thank you.
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Syrmom
I had taxotere back in 2002. It kicked cancers ass. Similar to taxol. very powerful drug. Here's to killing the cAncer in your liver. 👍. I believe SE similar to taxol. Prayers this one will work for you. Taxol stopped working for me after 10 months and started Lxempra. Which is used when taxol fails
Only best wishes
Diana
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Gives me hope Diana! I just completed round three with taxotere. I can feel it working. My right breast is much softer and the limp in my axillary is gone. One more round to go.
Liver enzymes look good and no pain. Would not know I had liver mets if were not told.
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Great news freyga. I too can tell when a chemo is working past the SEs. My body feels better and blood work good. When chemo is working the tumor load in your body decreases. Even though the SEs are difficult the body doesn't feel as sick with cAncer. 👍
My liver mets 2.5cm and .6 mm were found on CT. Liver enzymes had always been in normal next scan after 2 more Lxempra 👍👍
Best to all.
Diana
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Syrmom,
Happy to hear from you, i am sorry Gemzar didn't work for you , it failed me also. I had taxotere in 2011 it is a tough chemo , very much like Taxol . But i was on every 21 days so i guess it will be tough on weekly. I gained a lot of weight, neyropathy , water retention, and low white blood cells . Keep your feet well hydrated after treatment , use petrolium jelly (vaseline) it relieves the tightening you will feel in the feet. Warm bath helped me. There is also some bones pain. Of course each one has different side effects. It is a good chemo for cancer , so i hope it will stop the progression and and stabilize you. My prayers are with you. Hugs.
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Oh Wanda...my heart aches over your losing your precious Josh...a very fine, young man, who surely would have continued to make you proud. We lost my brother in an accident when he was 26...the same amazingly bright, fun, kind, thoughtful young man. Not a moment goes by that I don't wonder what his life would've been, who he'd have married, the kids he would've raised...he was my baby brother. But being the parent...having given birth to this child...I'm so sorry...and yes, this adds a whole different perspective to your fighting for your own life. You are loved...and as we care for each and every sister here, I'm glad you are here so that we can listen and help, and listen some more.
SyrMom...you're going to do this, girl!!! Freygea...woohoo...so glad you feel your body responding!!!
Woody & Diana...so thankful for your wise words...we're do blessed to be cared for & nurtured by each other. XOXO
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syrmom - I know you're not looking for the p/h part, but I gleaned lots of great ideas for managing taxotere SEs from this thread: perjeta/herceptin/taxotere
we all react so differently, so I wouldn't expect you to have these problems, but here are some ideas just in case: -- tons of water. I used a 1.5 liter bottle & made myself refill it a minimum of 2x/day. could really tell the difference between the days I was well hydrated and the days I slacked. especially helpful w/ gastro issues/edema. -- kept my nails dry & short (latex gloves whenever I was in the kitchen/cleaning; thoroughly dried my fingers/toes after washing). -- super-mild soap and lotion for absurdly sensitive skin. -- neosporin and/or aquafor for inner nose sores. a humidifier helped more than I thought it would. -- 'magic mouthwash' for mouth sores (mine was a mylanta/benadryl/lidocaine rinse. this site has a bunch of recipes for rx's ) been told if the rx is just for the liquid lidocaine part & you mix the rest at home insurance will cover it. -- heard this helps w/ metallic/icky taste: mberry tablets (my onc was fine with them) temporarily make savory/sour/spicy things taste sweet. helpful for obscuring the nasty/metallic taste. the 'kids' call it flavor-tripping.
-- neuropathy: I managed it well with quite a large dose of gabapentin, supplements, acupuncture, gel inserts in super cushy sneakers. infusion center had frozen mittens & slipper-type things. dunno how much good they did, but I used them when they were available. others brought their own frozen gel packs from home. that's all I can think of for now. I know there are many more suggestions in the thread linked above. some folks say it's super harsh, others didn't have such a hard time with it. I hope tax is mind-blowingly effective for you & your liver and surprisingly easy-to-handle!
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Ronnie, miss you too
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Thanks to all of you for your support & suggestions, I truly appreciate it.
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Wanda - My heart goes out to you. No words can ease the pain and loss you feel. Just know we care and your right, in a mothers eye's ... her life, in comparison to losing a child. No comparison. They say time eases the pain but it's been almost 8 years since I lost my sweet, loving husband. Our wedding son came on the radio the other day on the way to see my MO and man I just started to cry. So don't worry about healing now, you must grieve, no matter how long it takes. It may take Forever but I pray for you it's not as often and gets a little easier.
Cathy
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Woody - I just talked to the drug store who is working on getting an emergency supply from the manufacturer of this injection we spoke of. It is called Relistor. Now just hope they get it for me without waiting till Aug. 10.
Cathy
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Cathy, i hope they get you the meds soon , so you can get relief . Prayers this treatment will kick your cancer to nerverland.
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hi lovely ladies, just checking in on the day of my second chemo session. Thought I'd been doing OK until a couple of days ago started having sharp, stabbing pains under my ribs front and back. Onc told me this can mean one of two things - either that tumours are growing or that their blood supply is being cut off and they are dying. Given that my TMs are down, bloods are all good and kidney function "better than a lot of people's" she believes it is the latter case and suggests cautious optimism at this early stage. The pains are still there but I'm visualising a Kalashnikov in my liver shooting them to smithereens and I feel better!
Can't tell you how this forum has helped me over these first few weeks. I was in a really dark place just a month ago but your information, support and optimism has really helped me to put things in perspective and feel I'm not alone in all this. Love to all and have a good weekend.
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Oh Isy that would be great news. Let's smash those mets to smitherines!
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Isy,
I hope it is the latter cautious yayyyyy! I hope they ate soon blasted to no man's land.
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Hi, Ladies!
I've been trying to read and keep caught up with how everyone is doing. At one of my last posts, I reported that the 4 tumors in my liver could no longer be seen on scans! That was in May. My onc told me I could go off chemo (Navelbine) and we will scan every three months or so. I went to see him last week (two months) and from the blood work and exam, he wants to see me again in 6 weeks and then see about a scan. Of course, I'm thrilled not to be taking chemo, but a bit nervous that doing nothing will allow the tumors to grow back. I've been feeling better and most of the se's are going away...I can actually taste food again! Woohoo!!
My more pressing problem at present is my emphysema. They say there is no cancer in my lungs, but the emphysema has progressed significantly during my chemo treatments. I am on oxygen 14 hours a day (I still work full time and just take a small portable bottle for "if needed" times). Once I come home I am on oxygen until heading for work the next day. My latest bad news is that they don't want me to fly...this means no trip to see my kids and grandkids. I'm tring to work on my husband to do a road trip, but he's a stubborn man. Wish me luck and send prayers that he will change his mind.
I have no one to blame but myself for this disease...I was a smoker for 40 years even when told I was developing emphysema. What is it Forrest Gump said? "Stupid is as stupid does!" lol Anyway, I'm trying to do all the pulmonary doc says and also what the onc says and we will see how long God continues to bless me and let me hang around with all of you!
A big welcome to all the new posters. You've certainly come to the right place...as many of you have already found, there are wonderful ladies who share their wealth of knowledge as well as their kindness, love and encouragement. I promise to do better and will get caught up with everyone in the next day or so. Hugs to all!
Debbie
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hi Debbie, great to see your post and to meet you. Our dx seem quite similar. My liver mets are more or less being classed as triple neg as ER status is less than 5% though different people seem to have different views on this. Hope I'll be doing as well as you a year from now
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hi Debbie and all,
I saw my onco yesterday. The PET showed only one met in the liver but two lymph nodes up behind my collarbone also lit up. I have a port installed on Tuesday and start Gemara and carboplatin on Wednesday. Can anyone tell me what to expect? Thanks
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Isy - I sure hope so, too! Navelbine worked really well for me. They tried Xeloda, but I had one of the rare side effects, so we went right to Navelbine and it kicked those liver mets to the curb! lol
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Hi Sueper. I'm on my second cycle of GC. The first treatment left me feeling very nauseous. They prescribed lots of stuff for nausea, and I gave myself a couple of good pep talks; and week 2 was much better. Week 3 was my week off and I felt great and food tasted normal. I started cycle 2 Monday. The week has been ok, but I've just spent 2 entire days in bed. I don't know if it is the treatment or if I am depressed. I've enjoyed the rest and I think the treatment is quite tolerable, especially considering I can see it working.
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Thanks, dunesleeper. And Isy, my Mets this time are also estrogen negative--last time they were positive. I've been on tamoxifen for a long time. What are the two different schools of thought? Thanks,
Sue
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Hi Sue,
Negative hormone receptor status used to be dx to anyone reading below 10% and mine is now about 3%. However the latest NCCN guidelines state that hormonal therapies should be tried on anyone wtih MBS irrespective of hormonal status as long as they are stable and relatively well. This represents a significant shift in treatment options.
Bestbird on this forum has written an amazing guide to MBC, you can get it on the thread in the stage IV forum: Topic: Just Sent the 400th Copy of My MBC Guide! It has lots of links to very current research and also a report that discusses how the biopsy results can be fairly inaccurate depending on where in the tumour the biopsy needle goes. The middle of the tumour may give a lower result as there is very little blood there, the very edge of the tumour may also give misleading results that could be mixed with normal cells. So it's all a bit hit and miss! I guess all we can hope for is to stay well enough to try out all the different options and see what works for us.
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Isy, thanks for your answer. Also, when I saw the doctor he told us there are two lymph nodes behind my collarbone that also lit up on the PET scan. I got a port installed yesterday and today had my first week of gemzar/carboplatin. Fingers crossed! Whee, roller-coaster ride, let's go! Yes, if you detect a note of dark sarcasm, it is there. My husband goes back to work tomorrow until Sunday. I can't swim in the pool until Sunday. (Whimper). On a good note, after moving twice in fifteen months, we finally found our church!
For everyone here, hoping only good things; no side effects, good scans, NED and stable boy reports.
Night all.
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Sueper13, you and I are on the same chemo combo. At first they used Taxol on me, but it didn't work and even though my TMs went down (by 2 points) my oncologist didn't feel right about it and sent me for a PET. Sure enough it had progressed a little in the bones, a little in the lungs, and made itself at home in my liver. So we switched to this combo immediately. I have a lot more queasiness with this, which is somewhat helped by dexamethawhatever, zofran (not terribly helpful but I take it the first 3 days after chemo), and a 3 day patch I wear behind my ear. It's not pleasant, but it is manageable. Best of all, it really wiped out those humongous inflamed lymph nodes. I mean, seriously, they are flat. I hope the treatment is doing to the inside (especially liver) what I can see happening on the outside, and I hope it helps you, throwing knock out punches to the cancer. I just finished my 2nd cycle (4 treatments) so we are gemzar/carbo buddies. Let's get to NED together.
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Just popping in to give hugs to everyone. Dune, I am with you there! I hope your tx is zapping the heck out of those liver mets. Bust em up woman!
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Dune - You Giver Girl! Bust them up and Stomp all over them! Same for you sueper13!
Cathy
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Thanks for the kind words! And dune, yes, let's. Is the 3-day patch scopolamine? What day of the week are your treatments? Wonderful to hear about the lymph nodes
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Sue, my treatments are Mondays --- but not this Monday. It's the week off. Oh yes! Gonna have over a week of feeling good. I'll try to check the name of the patch in the morning.
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Finished chemo (Tykerb/Navelbine) 3 weeks ago, PET scan shows new multiple (!) mets in my liver. Up until last week I was feeling almost fine, but now I have this dull pain in my liver area...what do I do, in such a dark place
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I'm so sorry ella, that the combo didn't work for you. Has your onc suggested another combination? There are so many to try, another one should do the trick. {{{hugs to you}}} It's so scary when a treatment fails, but don't give up hope.
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Thanks Sandilee, I am seeing my oncologist on Monday to figure out next step. Sigh...
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Oh dear Ella...how long were you on tykerb/Navelbine? I'm so sad & sorry to hear about new mets...and I understand the dark place, but we will have faith, along with you, that they'll find a new tx that works. I wish I knew what the pain meant. How did your blood tests/liver enzymes look? Are TM's reliable for you? I'm glad you have a meeting so quickly...time to move on & start blasting mets! Love & hugs to you.
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Ella,
I am so sorry about your progression , we all know how it feels to fail a tx, and we all feel your dark place. But like Ronnie said we will not lose hope neither should you. I hope monday's meeting will bring you a tougher solution on cancer and blast it. We are all with you with prayers and hope . Hugs.
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Oh, Ella, have faith, find something to laugh about so you see some sparkling light while in the dark place--I guess that's all you can do til Monday. Then, we are all hoping with you that your Onc will come out with something to annihilate those liver mets. Wish I could send you some tickle juice and some rollicking puppies or your favorite comedian or something to make you howl with laughter. Hugs and Laugher!
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Elita I can understand the dark place. Mets will do that. I hope your oncologist has a treatment to annihilate those mets.
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Just came back from my appointment with my MO. On Thursday going for Immune therapy session, something very new and experimental, but he is very optimistic about it, so should I, right? Will tell you all about it, when I know more.
Dark place, schmark place, I am out! and ready to fight. Thank you very much for a small pity party, really did it for me.
Cheers
xoxo
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Sounds interesting Ella. Please do tell us about it when you can.
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It sounds promising Ella , i had heard about it last year but never investigated it more. Please let us know more about it. As well as keep us informed on your progress . Not only fight , break the damn thing. Good luck.
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Ella, that's great that you get to do immune therapy. You go, Girl!
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Wandering, i am so sorry for the loss of your wonderful son. I am recently diagnosed Stage IV with liver METS, terrified that I won't see my 3 beautiful children get married or their kids. But I do find so much comfort in the gracious kinds posts of all you women in this forum. Thank you all and I pray for you all.
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Ella, very best of luck with your appointment on Thursday, it could be the future for all of us and you're the pioneer! Great to hear that you're out of the nasty dark place too, it's great to have something new to focus on. look forward to hearing all about it. Hugs.
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Glad to see you have an appt for immune therapy Ella. Better yet ,so happy to see you out and fighting! Inspriing how you do not even give cancer a moment to regroup.
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My oncologist is giving me a 3 week pause and trying to figure out what I'm allergic to. Is it the Taxol or the Fragmin or the Hydromorph? Giving up the first two for now. Ruling things out. I will return to the boards when they figure it out. Hope all are well till then.
Cathy
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Cathy,
I am sorry you are suffering through this treatment. I hope they soon figure out what is wrong and i hope it is allergies nothing more. Prayers.
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Wandering, don't feel stupid. We all ignore little aches and pains, chalk them up to old age or injury. In retrospect, I did have some symptoms I should of pressed for more testing such as shortness of breath, little stabbing pains in my chest sometimes. I went to the Dr. twice, once complaining of shortness of breath and was basically blown off and told I had anxiety because of the finger paddle test she said my respiration was normal. the the massive pain in my rib another gal in the same practice told me I must have pulled a muscle somehow. If we all jumped to the doctor every time we felt things we would go bankrupt. Keep on fighting, one day at a time!
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dune,
If you don't mind my asking. How is the gemzar/carbo affecting your hair?
Thanks,
Sueper
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Dear ladies, I'm writing for my mum.
As I wrote in some other posts, last year mum found out she had a liver met. She had six rounds of Herc/Perj/Taxol, which made her stable and then she had a liver resection. During surgery, the surgeon found other very small mets, too small to be detected by a scan. He left three of them. After that mum started Kadcyla. She had three infusions and next week she is going to have the fourth. By the end of August she is going to have a MRI in order to see if the therapy is working.
Anyway it happens sometimes that she feels some slight stitches where the liver is. It doesn't happen often and it isn't painful, but I'm worried. The doctors seem to be confident about the therapy, but I'm afraid that it isn't doing its job, since her last biopsy was her2 equivocal and Kadcyla is for her2+.
Have you ever experienced anything like that? May it be just a consequence of the surgery?
Prayers to you all.
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WorriedDaughter, I felt twinges in my liver during taxol, while the PET-CTs and TMs showed steady improvement. I think it was my liver shrinking back to a more normal size. Even now I feel occasional sensations, but I think it must be the healing and clean-up of dead tumors, because the scans still show NEAD and the TMs are normal. I hope this helps you feel better. If there is biopsy tissue left, can they do a more sensitive Her2 test like FISH or CISH?
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I'm sorry, I didn't explain very well the biopsy part. She had a first biopsy, when we discovered the met and it's result was er+ pr+ her2+. After te surgery they did a biopsy of the mets and the result was er+ pr+ and her2 (FISH) was very borderline, equivocal according to ASCO guidelines.
I have read that Tdm1 could give a good result even in these situations, but still... I can't stop thinking that maybe the Herc/Perj/Tax combo didn't work at its best because she's no longer her2+. As far as I remember, she never felt anything like that during the previous treatment. Her TM are not very reliable, during this whole time the only "wrong" value was her d-dimer, but after four months it finally seems to be fine.
I pray God that those stitches are shrinking as you said. Thank you very much for sharing your experience.
Prayers to you all.
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I know I've been AWOL for a while. Mostly it's because the new chemo (Doxil) is leaving me both physically and mentally exhausted. I'm learning to adjust to it slowly.
So I had that strange situation of TMs going down, pain resolved, and scan showing progression. I went in to speak to the onc after the initial phone call. He had more info then. TMS: blood test 2 days after the scan showed they were already going up. So if we'd had that info sooner we wouldn't have been so surprised. Pain: scans showed bones are more sclerotic (medspeak for "harder") so pain is resolving (Go Zometa!) Onc said scan also showed some of the liver lesions were partially necrotic, which he said means the Navelbine worked for a while then stopped. I hope I get more time on the Doxil. At least it's once a month instead of once a week.
Leah
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Leah,
Welcome back it's been a while! I am sorry for the failur of nevalbine. I hope on doxil, you will get stable,. It's a harsh chemo.you would be tired. Praying and hoping it will bring you good result. When will they scan? keep us posted.
Prayers!
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Leah...like Woody, I've wondered how you were doing, but I take breaks from typing & understand it completely, especially if you're exhausted...this cancer-busting is hard work. It's interesting to hear that Navelbine had been working...so why in the world did it stop???? Million dollar question, I know. I'm praying too, that doxil will work wonders.
Ella...my onc said immune therapy is in his pocket for me...so please keep us informed. I pray something that sounds so hopeful, and isn't so damaging in the process, is soon to be the good news we've needed for way too long!!!
I'm sorry to not see others' news...sending healing thoughts & prayers to all.
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Hi Everyone,
I've been on a downward spiral of not having any luck with chemos since I was on a trial of Taxol, and Reolysin last year. Both Halaven, and Xeloda failed for me. I just stopped Halaven, because the tumours in my liver have grown again. This is the first time my liver function is not in the normal range. I may not be my former pre-mets self, but I still feel I have fight in me.
My onc now seems to be trying to push, "the talk" on me, and when I pushed back (gently, yet forcefully) she threw around maybe Navelbine, it would be "the only chemo left", or maybe a few trials, but my now slightly struggling liver, might count me out for those. I was a little shocked. It used to be a "bag of tricks", and she has never suggested another biopsy so see if my status has flipped either. I read on these threads of many, many chemos that our mets sisters go through, and often they will find a new one that works for them. I certainly haven't tried ALL of them.
I feel kind of defeated, and silly for still wanting to have hope, and wanting to fight. Looking for any advice if anyone of you who have experienced this as well. I see such inspiration, and hope in these threads, that I feel I have a right to keep fighting as well. Just frustrated with the system.
Thank you!
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Hi Woody, was thinking of you I remember you said your next scan was in August, have you had it yet? Hope everything continues to be good.
Janey, I'm a new metster myself so don't have any experiences to describe. But you're right, the ladies on here are so knowledgeable, someone will be along to reassure you, that there are plenty more treatments to try but from what I've read here navelbine has been good for a lot of people.
I'm doing fine EXCEPT peripheral neuropathy is getting quite bad and not improving between treatments. Onc seems more worried about that than my liver at the moment! So he reduced my last dose by 25%, he had put me on a large dose, and see if it improves. Am also going to try some B6 and B12 supplements which are supposed to help.
All the best to everyone from Oz (spring finally on its way)
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Janey,
I am sorry you are dealing with failure of treatment. But you are right it does not hurt to want to hope , stay and fight.
Instead of your onc trying to push for " the talk" tell her you want a new biopsy stat. I got the talk personally by my wonderful onc but i had already send the specimen for testing and it came back changed and frankly i believe it was a miracle and God sent. Since last november i have no evidence od disease. I thank God everyday for his inspration.
If i were you i would push in this direction, it may be the same but it also may have changed. If you are not comfortable with your present onc decision the seek another opinion.
Keep us informed.
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Isy,
Longtime, but i am glad you are well with abraxane, sorry about the neuropathy lolll we are now neuropathy sisters. I am using cymbalta since two months , my neuropathy is better thank God. I tried taking neurobion it is a B complex supplement but it didn't work.
My PET was schedulled for monday , but now it is put on hold till either tuesday or wednesday for lack of nuclear injection loll. So i will wait few more days and of course i will post as soon as i get the results.
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thanks woody I'll ask about cymbalta also. To be honest don't have much faith in vitamin supplements, they usually take a long time to make any difference. Does the cymbalta just mask the symptoms or does it actually repair nerve damage?
Good luck next week I'll be thinking of you,
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Isy, cymbalta is an anti depressant but which lessens the effect of neuropathy. There are no known treatments for neuropathy. But do not be afraid because with all the treatments i had which caused neuropathy i had an EMG done to see if there was any nerve damage , there isn't but i do have a mild neuropathy. Cymbalta relaxes the nerve so does Lyrica but i prefer cymbalta. I started on 30mg then on to 60mg. I am doing well so far.
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Janey, this is your life and no one else can decide when you are ready to stop fighting. I agree to push for the biopsy. Also, there are many other chemos to try, regardless of whether your tumor profile has changed. You never know which one will be the magic potion. If need be, get a second opinion or new doctor. Make sure to communicate that you fall in the "keep plugging and chugging along with treatments" category of the spectrum. Maybe some people don't have the fight in them but you do and your treatment should be guided accordingly.
Isy, I started Cymbalta for joint pain from treatment but I have noticed that it helped my neuropathy as well. 6 of my fingers went numb in the tips after I started cancer treatment. After I started Cymbalta, that has disappeared, along my the worst of my joint pain. I understand it's mechanism for helping with pain - increases serotonin and norepinephrine levels in the cells. However, I don't know how it helps with the non-pain related symptoms of neuropathy.
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Hi, I'm back! New problem! I have a question. I started Carboplatin/Abraxane 4 weeks ago. 3 weeks on and 1 off. On my week off, I began to lose my hair, thinning out, not in patches. This past Monday my husband took barber clippers and clipped it to bristles.He shaved my hair that night because the bristles drove me crazy. I shaved on Tuesday and Wednesday too. Then Wednesday night my head was COVERED in a red rash and itchy, burning red bumps. I saw my onc's PA on Thursday who wasn't concerned, gave me a RX for Keflex for 7 days, and told me to put hydrocortisone cream and Benadryl on my head. It's now Saturday night and no change. I was told not to wear anything on my head. I look like Frankenstein. My onc is very busy according to his staff, I feel that they think I'm whining. I go this Monday for my 2nd cycle of chemo, 3 weeks on, 1 off.
What should I do? My head is painful, itchy and embarassing. I look and feel terrible. Maybe I should see my primary doctor because my onc is really, really busy and it's expensive to see him. My specialist copay is $70 per visit, and I already see him about once a month. I have insurance but it's not good. We are going broke paying the out of pocket expenses and dr. visits don't even count towards the out of pocket. Plus the meds, prescribed and OTC. I just don't know what to do. I can't sleep, I don't want to go out, I am so depressed and it's Saturday night. I can't go to the ER,my copay is $233 plus 20% of the bill!
Has anyone had this problem with their scalp? When I had cancer years ago I lost my hair in clumps on A/C and shaved my head once and no problems at ALL.
Thanks -
Wandering,
I am sorry about the whole thing. But maybe it was there before shaving your jead and you did not see it. It could be an allergy to the meds and when you shaved itgot irritated. Usually cortisone should take care of it. Are they giving you decadron when you get your treatment?
If your MO cannot see you, then seek the help either ofa dermatologist or a pharmacist. There is a thread for affinitor on this site. The ladies had a lot of problems with the scalp maybe you can get some advise there. They site many meds.
Cortisone is effective in such situation but maybe you should get a shot and nota topical treatment.
Sorry i cannot help you much as it never happenned to me. I hope you soon get some relief.
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Thank you Woody. The bumps and spots were never there. In fact, my head was first shaved on Monday and Monday and Tuesday I looked great, very smooth. Wednesday night is when they first appeared. I may go see my primary care doctor this week.
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Hi JaneyDear - almost everything has failed me - the hormone inhibitors, all of them, dense dose chemo at the start, affinitor/faslodex, xeloda, etc. I haven't gotten the talk yet but got the feeling it was on the tip of my oncs tongue. After 31/2 years of unrelenting tx I was beginning to lose hope - started on Navelbine 10 weeks ago - 2 weeks on and one week off - so at 9 weeks completed one "round" and had a CT scan - I had multiple bone mets, spine, pelvis, skull, sacrum - they are all gone - the three tumors in my liver were beginning to grow together and form one big tumor - they have separated again and are less than 1/2 the size they were before Navelbine. My tumor markers and liver enzymes have gone down, then up a little, then down a little so not sure they are always a good indication of how well something is working. My onc did say that if Navelbine did not help she was reluctant to try another chemo as all chemo had failed me so far. But she did talk about immunology studies that are being done at UCSF - so it would seem to me that there are still options out there for you.
Also, as chemotherapy goes, at least for me, Navelbine is a relatively easy one.
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Thank you for your kind, and thoughtful responses. There is so much strength to be found on the Stage IV discussion board.
Isy, JFL, and Woodylb, thank you for your advice - I will request a new biopsy. I would rather know, than wonder. Thank you for the encouragement. Woodylb - oh, that is wonderful to hear. A miracle indeed! I am so happy for you.
apackoftwo - I am so happy that Navelbine is working so well for you! My liver tumors have done the same thing, and to have such results would be just amazing. Your success with this drug gives me fuel for my fight. I am happy to hear it is a tolerable chemo - my onc seems to think it isn't - but heck, the SE list doesn't seem half as scary as some of the others I've experienced! I wish you continued success on this drug. And I will ask about immunology studies.
Thank you ladies, and blessings to all. You've renewed my strength, and I am determined to make use of all the treatments options available!
I will keep you informed.
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Hi there,
So I did this immune therapy, my MO monitoring me every week (blood test etc), the results will be in the middle of November,the wait is just killing me. But I have new problem (does it ever ends?) - swollen lymph nodes under my skin on my chest, right above my right breast, or what's left of it (ha-ha). My MO biopsied it today and I am beside myself with worry. Did anyone had this experience? please?
I am very much up to date with all your posting and EVERYONE is in my prayers, I just have a problem typing, my right hand is almost out
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here is to hoping it just means your body is killing the cancer and you are having a great immune resoonse
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Ella, you are in my prayers also, hoping the results will be b9 . God bless you.
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Good luck Ella! Let us know how it works out.
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Dear pack...Navelbine saved my life...my liver was full of tumors & at my first scan at 5 mos on nav/her/perj, they'd reduced 80%. Three mos later, 30% more & 1 year into tx...stable. My liver enzymes were in the normal range w/in a month & TMs dropped so drastically, they tested twice. My onc uses Navelbine as first tx w/mets as she says it doesn't make you look or feel like a cancer patient (usually don't lose hair, just thins) and I did unbelievably well on it. I did weekly for 5 months and started dragging but when I went to 2 weeks on/1 off, it helped counts & energy. At 30 months, my new onc took it off & I went to just her/perj. I pray it works just as well for you!
Ella...praying this is the answer to sending bc packing for a one way ticket off the planet!!!! You are our trailblazer!!!
In CA, visiting son's family (basically here for GD time!), so heading off for fun time. I've missed so much, thinking & praying for wellness of body & mind for all. XOXO
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Well done RonnieKay. Are you feeling more energetic and less nauseous now? It sounds like you do. Woot! Woot!
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It's great to hear that Navelbine worked so well for you, pack and RonnieKay. Ellamilana, hoping for benign on the biopsy, and great results in November from your immune therapy. Is that a clinical trial?
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I had my Halavan on Tuesday...I believe this would be about my 6th or more which I have every 8 days..and once a month I have halavan...Falasdez...and bone booster (Xevada) ? I have been doing really well for about 3 mths..when I got that late 6pm call from OC say that my tm sky rocketed from 300 to 800 ..Question to you ladies..how low has any of you gone with tm and were doing well ...So CAT scan scheduled for next Friday...just made my OC a little curious..due to the fact I have been feeling and doing so well gaining weight ect.
So of course I go through a Emotional/Mental breakdown for 24 hrs...say gee louise what the Freak now...Been able to go to functions/camping/enjoying life the last 3 mths...and then BANG!!!!! It gets all shot down...DAMN IT!!
So I'm going on this weekend worry
Question for you ladies...How are you all with drinking Alcohol...such as wine...My OC told be to enjoy a few glasses on weekends..I have not indulged...but some nights it would be nice to just enjoy some Pinot Grigio...glass or two...to just relax ..I been around others that have indulged with wine...who their OC has told them it would ok on a Occasional basis only...OPINIONS please.
Just thought that Cancer Cells feed on sugar and that is any sugars am i right...
Sitting here with my thoughts while i'm trying to figure out what I did or didn't due to have the tm go up..i'm just so sad
It's like a roller coaster 3 mths well ...now probably 3 mths down..up down up down..enough all ready please...
Love and Respect and prayers to all you beautiful ladies...Carla
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Well...I'm a bad one to ask if you like your wine, Carla. When onc said liver mets, she said NO alcohol. For me it was no biggie cause I don't really care for it. I've taken communion wine 3 times & worried each time so I think Jesus understands :-). I'm extreme, I know. My guess is if it's just the sugar content, a mocha may be worse & I love them....so, I think if your onc says ok...moderation is the key.
I feel good, Dune, you're so sweet. Never had nausea, even w/taxoterrible first go around...prompted my onc to call me a poster child for chemo. I thought it was so funny THEN....when ever having bc again was never a thought.
Thinking of you all. More later...phone outta juice & off to bed. XOXO
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Janey,
From looking at your tx, it sure doesn't seem like you have tried everything there is!! And I would highly recommend Navelbine...I have been ned for four months because of Navelbine. And the se's are minimal compared to many chemo's out there. You keep on fighting, girl! And seek a new onc if this one seems to have given up. There are new treatments and new drugs, etc. nearly every day. I haven't been posting much for a while, but I do read posts and I'm in your corner cheering for you and sending prayers as well!
Debbie
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Carla,
So glad you've been feeling well...don't let this call stop you! Have your worry weekend and then get back to living and feeling good. This freaking disease certainly does take us all on a roller coaster ride and the key is to just hold on!!!!! I'll be sending prayers your way...sometimes the tm's go way up because cancer cells are dying, so that's what we should choose to believe for now. And, by the way, it's not anything you did or didn't do...don't blame yourself for this. Hang in there, girl!!! Debbie
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Dear all,
I write here to have some infos for my mum.
She has discovered one liver met about a year and a couple of months ago, after her first dx in 2009. She has had 6 months of Herc/Perj/Tax, which made her stable, than she had a liver resection, but during the surgery 6 more mets were found, very small mets, but still... Four mets were taken away and she was left with three small mets. Then she has started Kadcyla and after four infusion we have just found out that it made the liver mets stable, but now some lymph on the breast/sternum area are inflammed, which means, according to them, that ther should be some activity somewhere else.
In 2009 she was ER + PR - HER2 + and her liver biopsy had the same result, while the biopsy of the mets resected was ER + PR - HER -.
Now the onc told her that she has to do chemo again, but they don't know which kind of... I still wonder why they decided to give her only Kadcyla, since she has become HER2-. I'm so worried and scared.
Is there any of you who could share their own experiece, if similar? I really need some encouragement. I always try to stay positive for mum, dad and my little sisters, but there are some days in which it's really hard. I really hoped and prayed for some good news this time
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WorriedDaughter, I have had some experience with inflamed lymph nodes. One became so huge, hot, and red that I thought it would pop. Apparently they can do that. It was the lymph nodes that told me I was Stage IV. From there, we learned it was in my bones. So, yes, it can mean there is progression somewhere else. When will your mom be scanned for other mets? Love and light go out to you and your mom.
I have a question. The chemo I am on now did a whammy on those lymph nodes, and we hope it did the same internally. However, the past week or so, I have noticed pain below my right ribs. It hurt when the doctor pushed on it (surprised me!) and just a little while ago when I was bent down throwing my laundry down the chute. So I think there might be larger mets there now or something made it swell. Has anyone here felt like that? I understand the pain can get quite bad, but I'm more worried about throwing up which I have heard is a part of having liver mets. I do get a scan on Thursday and meet with my onc on Friday, so I will find out soon what is going on in there. It definitely scares me.
Also what are foods to avoid with liver mets? I know I have asked the question before. I don't know where I put the note about that.
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Hello everybody,
My biopsy results are back. I have carcinoma cutis, Dr. Google have very little info on this and whatever I could find is very confusing.
My MO is saying that its a part of the process, that my immune system attacking cancer cells and they are acting up and he is not worried. I really like and respect him, but this time its kind of hard to swallow...
thoughts?
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Dear dunesleeper,
As far as I've understood those lymph are slightly inflammed and she had her last scan about three months ago, so this inflammation should be something really recent (or at least I hope so). I don't know exactly when she's going to have a scan but the docs want to start chemo in ten days without waiting for a scan in order to stop whatever is going on as soon as possible and in the meanwhile they are going to plan a scan.
I really do hope that this new chemo will help in getting rid of her three small liver mets and stop whatever is going on anywhere else.
As far as it concerns my mum's liver mets, the docs haven't told her to stop eating anything in particular. Just not to eat a lot of fried food or too many sweets. Mum's mets have always been asymptomatic (and I hope they're going to stay asymptomatic in they have to stay there) and her blood test never showed anything at all, so I can't help you about that.
I hope that scan and meet with the onc will bring you some good news.
Prayers for you and all your family.
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Thank you WorriedDaughter. Many prayers for you and your moml
Ella, I just don't know. However, when I felt a loss of trust with my onc (and the treatment wasn't working) I scheduled a 2nd Opinion consult
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how are you doing Ellamilana?
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Just received the PET scan results. From what I've understood reading the report, there's nothing new. It only talks about the three mets in liver we already knew about, so I hope that mum can go on with Kadcyla whitout starting chemo again.
However well'have to wait to talk with doc in order to know what's next. I'm just a little bit concerned about the SUV... It's 5.7. Is it considered high?
I hope that everyoneis doing fine.
Prayers to you all
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I have been feeling pretty lousy lately so my MO had a repeat PET/CT. Liver and bone mets looked either the stable or slightly improved. The biggest problem was ascites. I am feeling bloated and I've been having lots of nausea, no appetite, some abdominal pain, etc. Kind of normal liver mets symptoms for me. My MO suggested that I have ultrasound guided fluid removal with an interventional radiologist, thinking if they can remove even 500 - 1,000 cc I will feel much better. I've read a lot about fine needle aspiration or paracentesis but it everything I've seen is when there is a large fluid build up and several liters are removed, not as little as my MO thinks they may be able to remove. Has anyone been through this procedure with such a small amount of fluid removal?
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Worried Daughter - I'm not sure about the SVU value range. I just know that I'm always happy when mine is lower than on the last scan. For example my liver mets went down from 11 - 13 to a maximum SVU of 8.4 so that is good news to me. Hope your Mum does well.
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What is the SUV? Is this something I could find on my blood chemistry panel or is it taken separately?
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Dear Sarah, thank you for your answer. I'm sorry that you are dealing with these symptoms and I hope that you'll soon get better. Unfortunately I have no information about the procedure you talk about, but maybe there is somoeone else on this board that can help you.
Dear Sandilee, SUV stands for standard uptake value and it's a value you get when you have a PET scan. It should indicate metabolic activity of the mets, though I have no idea about the values (what is considered high? and what is low?).
Prayers for you all.
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Thank you. I haven't had a PET, so now I know why it wasn't familiar.
I'm on my second cycle of Xeloda, hoping for results after four.
Best wishes to all.
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Ug, hate to report negative news. Feel free to skip this if you're looking for pick-me-ups.
TLDR: dx stage IV from the start 18 months ago - had a phenomenal response to treatment - NED on H/P for 12 months. Just dx'd with brain mets.
About me: I was diagnosed stage IV from the start 1/2014 -- her2+, a few small mets to liver. Taxotere, herceptin & perjeta did it's trick and got me to no evidence of disease - some called it PCR, complete radiographic response, and more - PET, MRI (liver & brain) showed up absolutely clean, and it was fabulous. I've been on just h/p since August 2014.
Last month, "new" vision issues appeared. I'd had bouts of blurry vision for awhile but after clean brain MRIs, they attributed it to drug SEs. Recently, very sporadically, wherever I was trying to focus my sight would become completely blurry. For example, when looking at the face of my watch - I could see everything but the details on the face. This would last 5-15 minutes and then pass. Very bizarre, no rhyme or reason. MO said she'd never heard of anything like that but wanted brain MRI to be sure nothing was missed. We were all confident it would be negative & I had an appointment set to see the ophthalmologist.
No such luck - MRI last Wednesday found 2 small brain metastases. It's unbelievably disappointing and frustrating, but seems the best thing we can do is listen to, and be aware of, ourselves. "Funny" part: while it is possible, neuro-docs really don't 'feel' the mets are causing the bizarre vision issue. We'll see.
I had gamma knife this morning, will repeat PET to check for additional progression, and see MO to find out about next steps. We are not considering this a failure of herceptin/perjeta - just lousy luck - so I'm not anticipating any change in drug therapy. Still kinda foot-dragging on researching this new world of crap but am curious about any possible 'preventative' measures.
Meanwhile, I'm still following an 'anti-cancer' lifestyle and incorporate integrative/complementary therapies - strict diet, mindbody and stress reduction daily practices, positivity exercises, lots of physical exercise, tons of supplements (I also see an integrative MO), acupuncture, etc. etc. - basically, the kitchen sink. Just shows how much of a crapshoot this is.
Ug. Got the brain mets news on our 3rd wedding anniversary - managed to still enjoy a fabulous celebration; so proud of dh & myself for putting the right things first. Haven't had a chance for the pity party yet - trying to keep up appearances for dh & rest of the family. I'm so incredibly heartbroken and don't see how sharing that with them would help anything.
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spicy--so sorry for brain mets news. I hate this for you and your family. Hoping gamma knife goes well. Words are escaping me. Just very sorry for your news. Please keep us in the loop. You can be heartbroken in front of us
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spicy- I hope gamma knife took care of it. I was on Tykerb for a while instead of herceptin, as it goes across the blood brain barrier. Kept me stable in the head for over 2 years. Its a no oral pill so nice and convienent.
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oh no, more bad news. Had my first CT scan after just three treatments of Abraxane. The chemo has not worked at all (except to give me neuropathy!!), new spots in the liver "too many to count". Was expecting the treatment today but doc is taking a week out to consider new treatment for me or possibility of a trial. So disappointed, everything was pointing to the treatment working and they just can't explain to me why this has happened. In effect I've had NO treatment at all and tumours are just continuing to grow. May move on to gemcitabine and carboplatin but at the moment just thinking if Abraxane doesn't work, whose to say anything will? Docs had such high hopes for it. Therefore so did I. Continue to feel well physically but very down in my head. Need some words of wisdom/encouragement from you lovely ladies please
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I'm so sorry. I wonder if some kind of hormonal therapy, like a Faslodex/Ibrance combo might be something to try since you are er+. How long is "three treatments" of Aabraxane? Maybe there wasn't enough time to see real results.
I'm sure your doc will come up with something, as you have just begun the stage IV dance. Don't lose hope. There are a lot of drugs out there, and something should work.
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Isy,
I am sorry Abraxane didn't work , i know itis very frustrating. But this is stage IV . It is always up or down . There are still many chemos you have not tried . I would not choose Gemzar and Carboplatin at this stage , if i were you i would suggest Taxol or any taxotere. They are rough chemo but work well on reducing tumors. I have had Gemzar and carboplatin it was very tough on my blood and platelet but not on the tumor . It reduced it by 20% and they had to stop it after 6 cycles because it became toxic for my blood. After three month on AI my tumors doubled.suggest weekly taxol or any taxotere. Don't panic there are still few options for you and one of them will work. God bless you and gives you strength.
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Sandilee and Woody, thanks so much for your replies. Should update my profile, my liver tumours were biopsied and have changed to more or less triple neg now so no hormone treatment and I think that's why the gem carbo combo is being mooted as it has proved successful for triple neg. I was having Abraxane every three weeks so basically have had nine weeks with effectively no treatment and now waiting another week. Only consolation is that my bloods are good, kidney function good and liver function "not bad". CA markers had slowly been coming down too. No-one seems to be able to understand why there is still progression but as you say Woody, stage 4 very unpredictable. Hate it!
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Dear all,
I've got a new question since oncs don't agree on what's next. According to PET mum's situation is stable, nothing was signaled except the liver mets (SUV is a little bit high, since it's 5.7, but that's all). According to MRI liver mets are stable, but a couple of lymph in the sternum area are slightly inflammed. They are about 12mm-13mm. Bloodworks are ok (TMs not reliable).
Mum's onc talked with another one from a different hospital and they agreed that, if the PET showed stable, mum had to go on with Kadcyla and had to keep the lymphs under control. Though today mum's onc wasn't there and she talked with another one, who said that it would have been better to change therapy and start chemo.
I'm no doctor and I think that high SUV is not good, but, since there is nothing new and the mets are stable why start chemo?
Prayers to you all
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Isy, I'm sorry you had that scary news. A different chemo could work very well. Is it possible for your onc to order chemosensitivity testing for your tumor? I have not had this done, but I have read about it here on the board.
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hi shetlandpony, I will ask about chemo sensitivity test though it seems a lot of centres don't offer it as it's not thought to be too reliable. However it would be nice not to have to go through another 9 weeks of treatment that's doing nothing! See Onc next Friday to find out about next step.
Hugsto all,
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Isy,
I, too, had my liver mets change and became triple negative. I tried Xeloda, but had a rare side effect so had to stop. I then went to Navelbine and after 8 months was found to be NED. Just had scan again last week and still no tumor growth. The onc says it's probably still there, but too small to see. I will take that as long as I can stay chemo free for awhile.
So, don't give up hope...there are many treatments still available and I know you will find one that works for you! Debbie
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Chichi i am doing the happy dance for you ! !
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Hello Ladies,
Isy, I'm sorry to hear that you had such a setback - but I am hoping that knowing now that you are triple negative helps to provide you with a treatment that knocks the stuffings out of the tumors!
Spiceypetunia - I'm sorry to hear about the brain mets. My advice? Don't confuse a pity party with support. News like that is like a punch to the gut - just knocks you back. I completely understand the brave face, and the soldiering on attitude, but sometimes you just need to stop, breathe, and accept support, love, hugs, and care, (and cookies!). Sometimes strength comes from others, and gives you fighting spirit.
RonnieKay, and and Debbie/Chichimaine - wow! That's amazing. So glad to hear you both had such success with Navelbine!
I really hope that Navelbine does the same for me. My doctor agreed (though I haven't seen her again yet!), and I am three weeks on, one week off. I am currently going into week three. When I see her next, I am going to push for a biopsy - my spidey sense tells me that the cancer beast that lives within my liver has changed its spots.
I am just taking it in baby steps. Not beating myself up for being tired - thinking positively that my tumor load will decrease, decrease, decrease...
Sending you all healing light, and prayers.
Jane
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Janey...I like your attitude :-)
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Thanks RonnieKay!
Right back at ya!I'd like to think I'm like those Bozo the Clown toys that when you punch them - they pop back up haha. Though - I don't pop up quite as fast now, more like in slow motion. I just wish I'd stop being punched - like this week when my WBC was too low to get my third round of Navelbine for my first cycle. Hopefully it will be back up soon.
Has anyone else had issues with their WBC? This is, believe it or not after all the chemo I've had, the first time my WBC was too low.
Healing light, and prayers!
Jane
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So I need to rap myself on the knuckles and tell myself to stop being such a wimp. Have just spent the last few days reading this thread from the start and some of what you ladies have been through (and still going through) with such hope, faith,humility and humour is awe inspiring. There was I feeling ready to give up after the first chemo failed makes me feel quite pathetic!! Reading about your journeys and having a good long talk with my onc has given me renewed vigour and hope. He told me he is in it for the long haul with me. He said that in his experience it is often the third chemo that is found to be the magic potion and basically told me to hang in there. He goes more on clinical presentation rather than CT scans and simply can't reconcile the fact that I look and feel so good, bloods are all good and yet the scan looked disastrous. So we have scheduled a PET scan for next week to get a better idea of the activity in there and in the meantime have started with the gemcarbo combo two weeks on one week off. Feeling great today as steroids kicking in. Chemo nurse told me to get plenty of iron in my diet to fight off anaemia so stocked up with Guinness, spinach and liver!
Thanks to all you lovely ladies and here's to supporting each other for years to come!
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Janey,
I had the same issues with the 3 weeks on and one off. I made it through three cycles of that regimen and then had to go to two on and two off. At one point I also had to take a month break from the Navelbine because I was getting too weak. The Navelbine continued to work even with being off a month...still continued shrinking the tumors. Hang in there...it is worth it!!!
Debbie
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Isy,
Glad you had that talk with your onc. It's so easy to feel like giving up...that's why this group of wonderful ladies have been so important to me. They are always here to listen and give advice and they let you know that you are not alone in this battle. Believe me, we have all had and continue to have our "wimp" days and worse! I'm happy that you have a plan now...that also helps alot. Thinking of you and all these other lovely ladies.
Debbie
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Isy,
We all have our "wimp" moments but they pass as our love for life is stronger. I want to wish you good healing on this combo, lots of prayers , and faith.
I had the same combo upon my reoccurence, it is a fairly acceptable combo as far as nausea and ill feeling is concerned. But please be aware carboplatin is rough on the blood, both red and white blood cells as well as gemzar . Also the blood platelets are badly hit.
Even though your nurse vonlonteered the info of iron. My onc told me the anemia has nothning to do with iron deficiency ,mit is strictly the side effect of carbo. Eating iron rich food in not bad , but the combo disrupts our bowels enough without adding the iron lollll. What i advise to do is to know your own body . If after the second cycle extreme fatigue kicks in then call your onc immdediatelt and run a blodd test . Also you have to be careful not to bump ypurself fall or cause any hematoma on your body and of you do , you watch if in half an hour it becomes doblue the size you do not call you rush to the hopsoital . Another symptom of low platelets i itchin very badly then you may see red spot where you itched looking like pins and needles also you rush to the hostpial.
This heppend to me starting after the second cycle continuing on to the third and so forth. I had to have a blood tranfusion, neupogrpen and cancel a dose and the last two cycles i got them on reduced dose.
You do not lose all your hair not from gemzar but carbo.
I got 20% rediction on the main tumor , amd small ones bcamce nearly visible and lower activity..so i switched to examestane which falied me after three months and i got s progression.
All this sais hehehehe not to scare it really is not bad and if your blood is strong you may not be so hardly hit. But if you get hit do not painc there is awlays a soluton. I hope it gets some reductiob and stable. Stable is not bad he is nice guybut his cousin NED lollll ot a much educated guy. I hope you get a long visit from eother of them . Keep up the fight we are here all for you. Gentle hug
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Chichi , lolll you're a tough cookie God bless youi hope you stay NED and keep kicking a**.
Go girl ! And don't Let anything or anyone stops you.👍🏼👍🏼👍🏼🙏🙏🎉🎉🎉
Kisses
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Hello, I am joining your group. My hx- dx'd stage ll B 2/11 triple+ IDC. Difficult tx with massive SE's, allergies, etc. Fast forward to August this year, found a new lump in other breast didn't think much of it (appeared quickly, moveable, not painful) but Mo wanted an ultrasound asap. BIRADS 5. I had also had been having some mild abd. discomfort to the right upper quadrant, and eating has become difficult, but never made a connection. Did the lab work for upcoming MO appt. and liver enzymes 4-5X normal. I can palpate the border of my liver well below my rib cage and it did not feel right. As my MO was on vacation for 2 weeks, went to see my PCP and she ordered a stat CT. CT showed large area of mets, diffuse, covering lower R lobe and extension to L lobe with portal involvement. While in hosp (allergic reaction to contrast) they did the biopsy of both liver and breast and put in a port. MO said she wants to start Kadcyla and Herceptin this coming week.
Is this familiar to anyone? How are you doing? What has treatment been like? Should I hope for anything? I will be doing a PET this week also. Any suggestions would be much appreciated.
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hi Woody, thanks for your words of wisdom as usual. Will keep a close watch on things like you say. Your post full of typos, not like you at all. Wondered what you were doing when you wrote it lol! Really enjoyed the Guinness though. First drink for three months.
Welcome to this thread Moni. I'm also quite new to this lark so can't offer any advice on the treatment you're getting but there will be others on here soon enough who are full of knowledge and wisdom. So what's the translation of your Latin quotation?
Can anyone enlighten me on what is likely to show up on PET scan I'm having this week, as opposed to the CT Ihad recently? Nerves are starting to build up again.
Have a good week everyone. My sis is staying with me from England and it's been great doing loads of catching up and just chilling. Luckily I've been feeling good and we've managed to get some good days out.
Xx
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Isy- the quotation is loosely "not all that terrifies is harmful". I read it as sometimes we should fear the unseen more. How prophetic.
The PET will show bone and soft tissue from "mandible to mid thigh" whereas CT is more defined to soft tissue and usually a relatively small area. Good luck. Doing one on Wednesday.
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lollll Isy, it was almost dawn , i had taken my sleeping pill but nothing came of it except typos hehehe. L have not been sleeping well lately. I am glad you enjoyed your guiness and even happier your sister is with you.
PET. Scan will show unusual acticity in hot spots in the body , example cell activities met sites. It is called SUV The higher the SUV is the more it is likely your tumors are prgressing. PET is not very accurate in size but 99% accurate in detectting metastatic activities throughout the body. CT cannot. In stage IV PET. Is used to be able to follow the patient more closely along with the mets. I have been having those since december 2014 every three months. So i guess this will be your baseline.
Sometimes the lesions show but when there is no activity on them it will mean your cancer is there but not active. Try to keep yourself busy until you get the results.
I pray you have an encouraging one. Enjoy your time with your sister. Hugs.
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Isy, I think I see why your onc has ordered the PET. You said you look and feel good, and labs are good, but CT looks bad. As I understand it, a CT will show the shapes of tumors, but the PET will show how metabolically active, or not active, they are. In other words, sometimes tumors show on CT, but the PET will show that they are slow or dying or dead. (This is what happened with me after taxol.) So I hope this info will reduce your scanxiety. Enjoy your visit with your sister!
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thanks Shetland. It would be lovely if all those mets were dying but after only four treatments it's unlikely don't you think? Doc also said something about checking for any activity in areas outside the liver. Now that is scary. Fear of the unknown again. Sometimes I think I'd rather not know.
I'm also in the scanner on Wednesday Moni though maybe in different time zones. Where are you? Hope it goes well. Will report back.
Hope you sleep better tonight Woody.
Xx
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I follow this post regularly - I have two questions regarding recent posts - my onc has told me that Medicare is now allowing only 3 PET scans for lifetime - this began sometime in 2013 I think - I have already had two since this started - has anyone else encountered this - it worries me that I have not had one in almost a year - I am having regular bone PET scans as apparently this is allowed but not full body and the bone PETS do not tell them what is going on in the liver.
Also, I am on my 5th cycle of Navelbine and am continuing to see rise in liver enzymes - enzymes were not elevated before starting Navelbine even though there were 3 active, rather large tumors. Contrast CT a month ago (after 3rd cycle) showed significant reduction in size of tumors so I am wondering why the rise in enzymes??? I will have a PET bone scan this Friday and another contrast CT after cycle 6. I think I read somewhere that Navelbine itself can irritate the liver and cause a rise of enzymes.
I have been lucky that my WBC and RBC have remained stable enough to continue treatment. I would be happy for any knowledge or feedback - Susie
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apackoftwo, if your scan show reduction this is good even if you have change in liver enzymes. Most medications we take irritate the liver so does nevalbine. They will return to normal eventually.
As for the PET scan , i am not an american but i do have family and friends there, i know that all Medicare systems will not pay for a regular PET it is too costly for them, how ever insurances do. I hope you find a way to keep scanning at least till you pass one year of stable or NED then you reduce the gap. I am so happy nevalbine is working for you and i hope it keeps reducing the tumors.
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isy--I am not on the same meds as you so I can't answer in that respect, but when I did half way scans,,,tumors in liver were reduced by half. Take any reduction! Even stability! Whatever the outcome, we are here for you
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Hello Ladies,
I guess it is time I join also! I was dx on 07/08/15 with stage 4 bc right from the start. PET scan that week showed little spots in the liver, but nowhere else in the body, so here I am. I had ovary removal 1 month ago and just (today) finished my first Ibrance + Femara cycle. I think it will help me to read back and get some more info for liver mets so I can see what I am up against! I am so new to the bc world, this has been quite the journey allready! I hope everyone is doing well, thanks in advance for allowing me to join you!
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Isy- I'm in Ca, USA. I guess you are way ahead of us and that your PET is over. Crossing fingers for some good news!
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Mama2twinsplus2,
I am really sorry you are here joining us. A cancer dx is no one cupcake . Liver mets are not the easiest mets, since the liver is a very important organ in the body and our whole blood system passes through it. But it does not mean no hope. Thanks to many new treatment options people are surviving lnger and doctors are managing the disease better. It is not an easy ride, it takes a lot of strength and faith.
They strated on the newest trial and i hope it will work to banish your lver mets. But keep in mind there a lot of other options and one maybe the ne for you.
I welcome you and hope you find BCO helpful and supportive. To me it is like family and all the ladies are wonderful and caring. We are here to support each other in the good and the bad.
Wishing you a good response and i pray you will pass rhis.
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Thanks, Woody! You're the best!! PET results yet or have you even had it? I remember it was cancelled or postponed for a bit. Let us know. Always rooting for you and all of us who have joined this rollercoaster ride!
Debbie
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Moni, yeah it's all over now but was in the waiting room when I saw your post. Managed to get quite a good sleep waiting for the contrast to kick in! Should get results Friday. Good luck with yours
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Isy- Waiting with you! (((Hugs))))
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Thanks Woody, I really appreciate the welcome and the encouragement! I need all I can get right now! I look forward to getting to know all of you and and gaining/contributing more knowledge!
Alissa
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Hi all! Well. it has been an interesting morning! Got a call from the onc's office that she wanted to go over the PET results. Said I had an appt on the 1st. She said the MO wanted to see me today and how fast could I get there? Talk about and oh sh^% moment! They never do that for good news! Turns out not that bad though, more lymph nodes throughout the chest and peritoneal areas, but no other major organs, liver and breast that we already knew about. The receptors changed from triple + to ER/PR- Her2+. Didn't expect that! So she is not sure if it is mets from the first time or if it is mets from the second. She is leaning toward first though with a flip-flop. I explained the need to not miss work for 6 weeks and could we wait. She said no, I do not have that time. She wants to start chemo on 9/29. She said this is very aggressive and is worried about liver function. Dang it! Anyway, guess I just boarded the roller coaster!
Isy- Any word yet?
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It's never simple, is it? It's really good that your doctor is on this and not delaying. Does she think you might be able to work while on chemo?
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Hi ShetlandPony- Ahh, no never. Yes, she is hopeful. My job will not be physical now, so she said go for it. No way I could have worked the old job any more. Office called after I got home and said my allergist will be at the infusion center with me for this. Blew me away, love that guy. He actually teared up when I told him what we suspected with the liver.
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in the waiting room moni.
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Oh Isy, that is almost worse! Waiting with you..(((hugs)))
-Monica
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definitely the waiting room is worse - and getting calls like you did Monica! If only they could give you some idea
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Oops! I'll continue.. If only they could give you some idea of what it's about before telling you to rush in. I had something similar. After my PET scan the tech said she just had to show it to the doc before I could leave. She then came back and said they were now going to do a brain CT scan as well. I knew my onc hadn't ordered this so was of course immediately convinced that they had found something in brain and needed a closer look. And as I was leaving I got that sympathetic, head on one side look from the tech that made me even more convinced I only had days to live. When I told this to onc he said it seemed they had started doing this as standard practice and not sure why. However he would tell them to explain that to patients in future!
Anyway, back to PEt scan. Nothing to report that we didn't already know: mets are extensive and haven't responded to treatment yet. However, they have NOT spread which is what I wanted to hear. I feel if I can contain it within my liver I can deal with it. She's a tough old boot my liver and when I looked at the scan there were still large green areas there so I'm not feeling too bad about it. Just got to find the chemo that works!
Hope your treatment goes well Monica, make the most of the time off work if nothing else. Welcome to the roller coaster indeed!
Hope everyone else doing OK
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Isy, if they have not spread more , that good stable is good . As for scanning the brain , well i know is not something anyone wants to hear, but maybe at a certain level they do scan by precaution. The waitng kills, i know but i do hope nothing comes out of it.
Meanwhile, i hope they work on finding you a good combo which destroys these mets. Keep us posted. Prayers heading you way .hugs.
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I know when I had my PET scan a few months ago, the same thing happened to me. They just explain that the CT scan was needed to get a good, well rounded picture of the brain. I was very worried, but the onc concurred and then I found it it was all clear, the brain CT that is! Hoping the best for all you ladies!!
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Isy- that is terrible! Of course the first thing you would think is brain mets! Glad to hear that the mets haven't spread and hoping they find the right combo to knock them out!
Does anyone else have pain with this? My digestive system does not seem to like anything I eat, and I have a continued gnawing pain over the liver area. I can't take opioid pain meds as I am allergic. My MO gave me a script for fentenyl tabs, but I can't find a pharmacy that has them. I also have been using toradol, but they said only three days worth because of renal failure in the past. So I use those sparingly to make them last. Do not know where to turn now, but open to anything.
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The brain is a metabolically active and use glucose. As the PET scan relies on glucose uptake to determine cancer activity, it is not a great test for showing brain tumors. That is why they use a CT scan or MRI to check the brain. Hopefully that is why you are doing the extra test, not because they saw anything.
Best wishes
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leftfoot,
It has been a while since you last posted, how are you? I hope all is well .
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Well things just keep snowballing. I can not get the pain meds that my dr prescribed because I am opioid naive. I am opioid naive because I am allergic to opioids! Unfortunately, I do not have those records as the Dr and hospital where I was treated closed and I am sure the Dr is dead now! Incredibly frustrated! So what happens when I need end of life pain relief? Need to find a street vendor......
I read the PET that was posted on-line and it was more that the MO let on. She conveyed the urgency of treatment, but not specifically why. I now know why: so many lymph nodes from supraclavicular to groin gave up tallying, met to left lower lung lobe, over 75% of the liver has been replaced by tumor. And to top it all off, the MO's request for and emergency drug approval is not happening that fast. I will have to sign a letter of being responsible for the Kadcyla infusion on Tuesday! The MO's office feels it will be approved, but not by Tuesday.
Not sure how much more I can fit on my plate. Feeling a little hopeless tonight.
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Moni, I just don't know how you are managing to cope. Please hang on and get to tomorrow. From things I have read on here things can make a remarkable turnaround over night. My heart is with you and I will say a prayer for you tonight that you find the relief that you so desperately need.
hugs
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Hugs Moni.
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Woodylb- Thanks for asking. I am doing ok. Running on fumes but I guess that is going to happen when chasing 4 kids and doing chemo. I had a brain scan two weeks ago and everything is still all clear. I had an echo this week and saw cardiologist thursday. My heart is doing better than ever. Thinking hitting the gym with the trainer 3x a week is not hurting. If only I could lose the weight. I have another Herceptin infusion on Tuesday coming up. Will see my oncologist that day. Which is good, as I heard through the grapevine that she was leaving. She confirmed so I expect we will have a lot to talk about. I have to find a new oncologist which is stressing me out. I know it will be ok, but she is the only person who has treated me so that is a little scary. Ill have one more CT scan before she leaves probably in the next few weeks. That will be an interesting one, as it is the first scan since my surgery. I am sure it will look funky as my liver is regenerating and there will be scar tissue. Just hoping of no new lumps. It would such to have to start yet another protocall with a whole new doctor. What a way to break them in right.
Anyway, I am doing well in the grand scheme of things.
leading a team in the local Strides against Breast Cancer and am currently the 2nd biggest fundraiser and my team is second best as well. I take pride in that.
Hugs to all
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Oh Moni so sorry to hear you're going through all that I hope you manage to get some pain relief soon! And something to calm you. Like we said before, transparency and honesty by our medical professionals is so important, it is NOT nice to find out these things by yourself or give you so little information you're left wondering if you're getting the whole story.
herceptin is doing great things for those with liver mets and once you get yours I'm sure the fog will begin to lift and you'll start seeing results. Thinking of you,
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Hi Ladies,
As promised I am back to update on this thread. It turns out my MO was correct with my allergic reactions to my Taxol treatment. Latest scans showed that the Taxol was shrinking both the lung and liver mets however my bone mets were still progressing the worst being in my spine. To target this I underwent bone radiation witch helped a lot. My break from treatment (gong moment when done Radiation) was very short lived however. I finished bone Rads on Wed. last week and Thursday I was taken from my home by EMS after having a fall and not being able to get up and a lot of side effects similar to a stroke. I was transferred to my cancer center where I found out that my mets had spread once again this time to my brain. Although we all know this shortens my life expectancy I do continue to fight all I can. Wish everyone the best in there battle.
Cathy
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Cathy, i am so sorry for your progression and specially on the newest location. But i admire your fighting spirit and no one knows you may beat the odds. When will you discuss with your MO the next steps? Is gamma knife a possibilty? From what I understand it is mainly the way they use to stop brain progression. I hope it is an option for you. My prayers are with you to beat the damn beast, please keep us informed. (( HUGS)).
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Woodylb - I have never heard of gamma knife but will ask about it Oct. 6, next time I see my MO. My Radiation oncologist didn't mention it yet he said they do keep each other updated and would be happy to be paged to join in at my next visit. I have such a wonderful family and friends, I feel so lucky. I was told that on average for my liver and and brain mets it may only be 6 months yet they can only estimate that by others who also had same mets as I and how they did. I have a beautiful daughter getting married in April and will do ANYTHING to be there for that and longer if possible.
My son and I after the fall and brain radiation. -
Cathy i am so happy you are so well surrounded and happy with it. You are a strong lady and very determined. They told you six months , this is an estimate but the truth is no one knows. So keep the faith and the spirit of fighting.
Here is a site from mayo clinic about gamma knife surgery pleasr read it before talking to your MO so you can present your case and see if it is feasable for you.
http://www.mayoclinic.org/tests-procedures/brain-s...
Here is the link i hope it helps.
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Cathy,
You have a lot to fight for with that wedding coming p. Hang in there and fight with everything they've got. We are thinking of you.
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Good evening Family & Friends, I want to apologize for not keeping a open conversation on my page about what has been going on with me the past 6 days....I need to have your forgiveness on this one...cuz I had to make sure my family was informed and secured and felt comfortable for me to post this very personal info about my journey with my Cancer Diagnoses. So I am Home after being in the hospital for 6 days...I was enduring sever pain that woke me up out of a deep sleep 6 days ago..I't was located in my left leg,femur,groan area. I could not walk just tremendous pain. I texted my Doctor at 2am in the morning and he responded to take a double dose of my pain meds and he would arrange to admit me to the hospital the next day. Which was the 9th..I was given a CAT scan and the results returned with a massive tumors in my left hip,femur,and groan area...So my Doc told me that my Cancer is progressing rapidly and we needed to start radiation treatment ASAP and get me on an pain regiment for the pain...Family,friends..my cancer is in a progressive state as of today. I have to do radiation until the end of this mth...and also am on two oral chemo pills.
I decided yesterday that I did not want to stay any longer in the hospital and told my doc that I wanted to go home and make my life back to normal. He ask me if I was interested in a Nursing Home..."I send fuck no" kinda of surprised him with that out burst (lol) I need to go back to my life...he said ok I'll get you released papers..The reason for not communicating on FB is 1) I was totally Doped up. Witnesses Stacy Heath and Krista M Mitchell 2) I was not ready to release info until I notified my family. 3) I was not emotionally ready to talk about me being in a progressive stage in my disease that means my life has shorten. I probably will be not on here much because I need to focus on coming to some kind of understanding of what and is going to be the end of my life. I am scared to death and I have not come to terms with that part of my life, departing from my children...grand boys and family members...and all my dearest dearest friends i have made in my life. I have to come to terms with what God has plans for me now and understand and except this decision he as made to take me to his home. I love and cherish my family...friends...with all the love I have in my being...I need everyone of you to try to come and see me personally more now then ever. Please give me and my family a little break for a short while...not forever to get adjusted to this big change in our lives...I will promise to keep in touch when I'm feeling well enough to get on FB and Text Folks. Just please keep my children and grand kids and myself in your prayers...and I LOVE YOU ALL...PLEASE MAKE SURE YOU ALWAYS TELL YOUR FAMILY AND FRIENDS THAT YOU LOVE THEM DAILY...BECAUSE YOU DO NOT KNOW WHEN SOMETHING CAN TAKE YOU AWAY FROM THOSE YOU LOVE. THANK YOU AND GOD BLESS!!
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Freebird,
I am really sorry for your progression, this disease sucks. I am at loss of words as i cannot be in your shoes. I hope your doctors find something else which will stop the progression and gives you more time. Surround yourself by your loved ones , feel their love and warmth it will take away your fear,
You and yours will be in my prayers daily, so you have pain free days, so God help you in your journey and ease your sorrow and gives you and your loved ones comfort. God be with you . Gentle hugs.
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Freebird, so sorry for what you're going through at the moment but sounds like you've had so much love surrounding you in your life and I'm sure that will help you through.
Sending warm thoughts to you and everyone else on here who is going through difficult times right now. Xx
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Freebird, sending love to you.
Leah
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Freebird,
So sorry to hear this, we are all here for you anytime you want/need to talk. Sending love your way!
Alissa
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Freebird53 - Sending you peace, light and love. (((hugs)))
Moni
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Freebird53 - You are in my thoughts and prayers!! Its difficult to put in words what I feel for you, but happy you have family and friends with you giving you love and support. (((hugs)))
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Freebird you are in my thoughts. I wish you peace of mind with whatever decision you make. I am glad you have friends and family around you. Know we are thinking of you and are there to support you.
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Hi again Ladies,
May I express my sadness for anyone that is progressing. My heart still goes out to you all, praying you all have good outcomes and pain free days.
Woodlylb - Thank you so much and I will check it out so I am well informed.
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Freebird, I look at your picture, that beautiful smiling face and all I can think about is how cruel and unbalanced life is. You have been so gracious in sharing your story and I hope and pray with all my heart that there is still something that will turn things around for you. May God relieve you of both the fear and pain you feel. You are in our hearts forever...
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Oh Freebird, so sorry to hear your news yet happy to hear you have such a loving supportive group of family and friends. Cancer sucks! I hope a miracle happens and things change. I hope the radiation is relieving the pain. I hope you manage to find peace of mind and are not fearful but present in each moment and surrounded by love and joy and good times and the knowledge that your love is felt by those around you. Keep the love flowing through it all and rest assured your legacy, your smile and your you-ness will carry on. Thank you for sharing with us. Love, love, love to you.
Michele
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Hi everyone, my mom had progression with Gemzar and the onc wants to change her chemoto Halaven. Could anyone share your experiences with Halaven? I was hoping for Navelbine, but it looks like Halaven is the prefenrece...thanks!!
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Hi Everyone,
I have been stage 4 for 2 years with widespread mets to my bones. Treatment was removing my ovaries(I was only 37) and I was placed on Arimidex. I was NED for about a year and then when that changed I was placed on Fasolodex. That didn't work and that is when a PET showed that it had spread to my liver. This all happened only 3 weeks ago. Liver biopsy confirmed that I am still ER/PR + HER2-. So I started on 5mg of Aromason and Afinitor. I am moving up to 7.5mg in a few days and then I will go up to 10mg. So far I have no side effects. Just a bit tired. Scared of moving up in my dose. Anyone else have success with this combo?
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Sonyarizo,
I am sorry for your progression and hope the new treatment works. In order for you to get more information about the combo aromasin/affinitor go to their thread. Serach under topics and write the name you will get the thread. I know some ladies took it , some for bone mets and their mets.
You are welcome to the thread here even though nobody really wants to be here. Good luck to you on the new combo.
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Freebird,
Wishing lots of love & healing. Hoping you can alleviate the pain & get full mobility back.
Terri
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So sorry to hear of more pain and progression for some of you! I must say that Taxol did shrink liver and lung tumors for me but only Radiation helped with bone pain and my Brain mets along with steroids (causing sleeping issues) yet worth it. Tapering down off them now. Good luck ladies, I will help anyway I can if you need more input please feel free to IM me and I will eventually answer you back! My MO told me that every treatment can vary for everyone, as so dose their cancer and we all have individual cancers.
Keep up the fight,
Love, prayers and hugs,
Cathy
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Freebird,
My thoughts and prayers are with you and your family. I pray also that the radiation shrinks and/or destroys the new tumor. Also that you find meds to help you be pain free. Lots of prayers, but then again, we have a God who performs miracles! I understand that you need some time, but please keep us informed...lots of friends here who care.
Debbie
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Cathy, So sorry to hear of the brain mets. Prayers and hugs going out for you! Don't give up hope...every day that we live is another day that researchers find a new treatment and, one day, a cure!!
Debbie
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Freebird and tryn2staycalm, my heart goes out to you. Wishing you both hope and peace.
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Hello and welcome, Sonyarizzo. Hoping with you that A/A treats you well.
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Fhiado, I don't know anything about Halaven, but I see there are threads about it, including this one:
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Hello again,
I started A/A two weeks ago and my tumor markers have sky rocketed. The last time we tested them was at the beginning of August and I didn't start A/A till the end of September. I only had bone mets when we last tested my markers. Hoping that its the liver mets that made them go up so high. Really hoping that the new meds make them go down because they are scary high. Anyone else have this happen. CEA went from 6.6 to 77.7 CA27-29 went from 394 to 3588 and CA15_3 went from 151 to 425. Pretty scary, although my dr doesn't seem worried. He wants to keep me on A/A for another month and then test again. I was only on the 5mg but now have moved up to the 7.5 and will move up to the 10mg soon. I am praying that it is all working. Just wondering if anyone else has experienced this.
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Sometimes markers elevate after starting new Tx. I've read that markers shouldn't be given much notice until 3 months after starting new Tx. However on lxempra my markers also elevated and scan after 7 chemo a showed progression in liver. Now starting gemzar. My marker is 1300.
It's scary. Some treatments work for some of us and then for some no. I hope your markers come down as you increase dose.
Been following this thread. Always thinking about my people on BCO. Best to all.
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I just posted something similar on the Ibrance thread. I just finished my first round of Ibrance and had my tumor markers drawn ,and they went up! They also told me not to panic, but easier said than done! They are keeping me on my current treatment plan with plans to redraw markers and hopefully a scan at the end of this month or next cycle! Prayers for everyone and big hugs!!
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I'm another one with markers going up. I'm supposed to have my next Doxil tx on Thurs so onc wants me to come in tomorrow (Weds) to do markers so we'll have the answer before tx. I'll also be seeing him. Lately I've been having discomfort in the area of my liver and I've been having trouble eating - no nausea or anything but I can only eat small amounts or I feel overwhelmingly overstuffed and uncomfortable about 1/2 hr after eating. Has this happened to anyone else?
I'm supposed to travel to the U.S. to see family next week so I hope things are still OK for me to go. Amongst other worries.
Leah
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Leah good to hear from you, it has been a while since you posted here. I am sorry you markers are going up but as i am sure you know that sometimes when you start a new tx they do go up then drop down. I hope this is your case.
tell your doctor on how you feel after you eat if you intend to travel to the US. This could indicate that the liver is enlarged , make sure it is nothing of the sort so you can travel safely and enjoy your trip.
I hope it is the SE from doxil and i do hope you will be able to travel and see your family.
Sending you prayers and good vibes , please keep us informed on what you doctors says.
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Leah___S- Yes, that is exactly what I was feeling. I had not been diagnosed stage 4 yet, so I went about 6 wks ignoring it. I did start to get nauseated, and would vomit if I ate to much. I finally went to the dr when I started having pain and my pre-appointment labs showed my liver enzymes were 4-5x high. It was almost like my liver did not fit in it's space any more. Actually, it didn't, >75% tumor. Currently, my abdomen looks like I'm 7 mo pregnant and they want to do an US for ascites.
I just started Kadcyla and was told that the TM's may go up yet d/t tumor lysis. I hope this is your case. Do get the liver thing checked out though, and I hope you are able to travel as you wish!
Moni
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I have heard so many contradictory reports on Tumor Markers and whether they are a good indicator. But Have heard repeatedly that thye almost always go up for at least a couple of months. Leah I have heard that if it your liver giving your appetite problems it usually causes nausea. Best to you too Diana and Shetland!
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Wishing all of you well with the liver mets. I'm going in for low dose taxol 3 weeks on, 1 week off next Monday at UCDAVIS. Hope to get rid of the these liver mets.
Terri
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Unfortunately, the TMs are jumping even more. CA 15-3 was 579.5 before I started the Doxil. After the 1st tx - 1063.5. After the 2ns - 1841.2. After the 3rd (yesterday's blood test) - 2653.5. So I didn't get the 4th tx since onc an I agree no point. I'll have a PET/CT as soon as I can get an appt. My onc says it's best to wait with my trip until after results and new tx set up. Little girl inside of me said "I DON'T WANNA!" Smart adult part told her to shut up and then cancelled the tickets.
Leah
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Good luck Terri on low dose taxol. It's a good drug; worked for me for 10 months and saved my kidneys.
Leah sorry about the trip; the choices we have to make sometimes. I can relate to the increase in TM. Mine elevated on Lxempora and scan confirmed progression. Your onc will come up with a new Tx plan to hit those nasty cancer cells. I just started gemzar three weeks on and one week off . Praying it will lower TM and cancer burden.
Reading all responses on liver met thread. Only sending healing and good wishes to all to blast those rumors out. 👊🏻
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Leah, so sorry you had to cancel your trip. Hopefully you'll be able to reschedule when you get on top of things. I'm beginning to realise that TMs are totally inconsistent. When I started treatment mine where coming down nicely only to find after three treatments that I'd been progressing all along! I sometimes wonder what is the point of them at all?
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Leah, that is a such bummer about your trip. When you get squared away on your new meds you will have to plan something special. Terri, hoping the Taxol blasts the &*%$ out of those liver mets!
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Leah, i am sorry about your tms and the failure of doxil . Did your doctor discuss with you Ibrance /femara?
I hope the next tx will bring everything back to normal so you can go on your trip and enjoy yourself.
Keep us informed your next step.
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Terri , good luck to you on taxol i hope it shrinks those mets right back to where they came from.
Diana, i hope Gemzar is the right choise and that you would benefit from it.
Prayers and best wishes to all those whose name i forgot to mention. Healing thoughts and wishes for good responses.
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Dear all,
today, a week after her fifth dose of Kadcyla, mum is experiencing some digestive problems and had ended up vomiting all she has eaten during the day. Her blood tests last week were ok, the MRi she had a month and half ago showed stable disease (3 mets in liver less than 1 cm each) and the in PET she had about a month ago nothing new showed up (liver mets' SUV was 5.7). She says she hasn't pain in the abdomen area.
I'm really worried, since I know that vomit may be a symptom of liver mets getting worse... When she had a bigger liver met before resection she had never experienced vomit.
I know that you're no doctor, but your wisdom and experience could be very helpful. Do you think we should get worried? Or maybe she has eaten something that caused her this?
Prayers to you all
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worried daughter- it may be the meds. My liver mets are larger and more numerous and I don't have any vomiting or problems from them- but my meds do cause digestive problems. It doesn't seem likely that her Mets could haven grown enough in enough in six weeks to cause vomiting. Hers were very small, and even if they doubled in size, it wouldn't cause vomiting. But as you said, we're not doctors, but I'd look to a different reason. Check into whatever meds she's on, or any other cause, but also you should report her symptoms to her doctor on Monday to see what advice they have. Sorry .
Also, check out the Kadcyla thread. It seems that nausea is not uncommon on that drug.
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Dear sandilee,
thank you for your help. It turned out to be a bad flu, but mum already feels better. I was very worried because I never saw her feeling that sick.
Thank you again.
Prayers for you and all your family.
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G'day to my band of BC sisters, I have been lurking here for a few months but, due to being in a state of limbo regarding my status, haven't had much to report. I started CMF tx in March after having my right hip replaced and completed 3 cycles before stopping for the left hip to be repaced in June. These hips were badly affected by the AI's I have been on for the last 6 years for bone mets.
When I went back to restart the chemo, the Onc I saw did not look at the scans or blood tests I'd had done, telling me that he went by how the patient was feeling and wouldn't put me back on CMF or anything else once more! I've got to say here I left there feeling like I had been sentenced to death...probably by Xmas.
The next month, I saw another Onc who promptly set the gears in motion to start tx again, much to my relief.
I should explain here that I live in a small provincial town about 260 miles from the nearest large cancer facility in Brisbane where I had to go until two years ago. They are importing Oncs from two states away to 'fill in' until they find one willing to move here permanently, which means that I haven't seen the the same Onc twice in the last two years. The young Dr who restarted my tx was very thorough with reviewing my files and got things moving asap.
Having already completed 2 cycles that she presribed before having new scans/blood tests done and, depending on comparison w/ last scans results, I would stay w/CMF or start a new regimen.
Today, I saw a new Onc who read my files, checked my pre-chemo blood tests and chose to keep me on CMF until the new scans and blood tests are done before my next monthly app't. Apparently, my liver stats have dropped from 800 to 500...yayyy...bearing in mind that that was not the test that takes a few days to process, but I left there looking forward to seeing this Xmas in.
As I am in my 21st year since primary dx, I know I am very fortunate to still be here now, but we wouldn't be human if we didn't want a little bit longer, at least long enough for very young grandchildren to be able to remember us
I hope this gives a comprehensive overview of my position and doesn't raise too many questions, which I will answer happily anyway
Sheila.
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Nice to hear from you Shelia- Glad you have a treatment plan and are doing well. Your post gave me flash backs to the trip I took to your lovely country almst 3 years ago. Brisbine was our last stop. We loved our vacation so much my husband looked into a locums job there. Unfortunately, because of my stage 4 status, I coudln't get the medical coverage I needed so we are still living in the states. But I remember my time there so fondly. Best wishes to you.
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scanxiety day for me today. tomorrow is my first scan since I had my liver surgery in July. I am in the middle of my bad days of my Xeloda cycle and woke up feeling bloated. And you all know what that means. Trying to keep my head in the game and know I should be fine. My brain scan was good last month and so was my echo. Just hoping tomorrow brings the same news. Just a little scared as they changed my targeted treatment as well. so lots of first with ths new scan.
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Sorry you didn't make it down here, leftfootforward, you surely would have had a good life here.
I was told that surgery to the liver couldn't be done, possibly due to bleeding issues...so did they cut out liver lesions or do some other procedure.
Sheila.
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Shelia- they did a partial left lobe resection. They removed in total 20% of my liver. I only had one lesion this time and I guess it was in a good place. They had to tie off some blood vessels but that went ok. I guess if they couldn't do that they would have removed the entire left lobe. So I was lucky. The first time around with liver lesions, they told me they couldn't do anything for me because my liver was so full of cancer. So i am happy I could do someting this time around.
I wish we could have moved there as well. Love Australia. We spent a month there. took the kids out of school and enjoyed every minute of it.
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Morning AussieSheila, from a fellow Aussie. I'm in Torquay, on Victorian Surfcoast not far from Melbourne. luckily we have a large regional hospital in Geelong, about 20 mins away that has a large cancer centre. I usually get to see the same onc. Though the waiting times can be horrendous. Must be hard for you to see different people all the time but you are still here and sounds like your keeping your spirits up. Where exactly are you? We lived in Townsville for couple of years. but it was way too hot and humid. Nice and cool down here. I love this forum and find it so much better than the BCNA which is really hard to find your way around and it's always interesting to Learn of the different treatments and protocols from our mostly american sisters. feels like we're missing out sometimes.
Left foot best of luck with your scans today
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Pleased to meetcha Isy, I live in Maryborough and attend Hervey Bay hospital but they have set up a dedicated palliative care ward in the Maryborough which opened up a week ago. The two hospitals share different specialtys thank goodness as we have the stroke rehab centre for the whole Fraser Coast along with the Renal/dialysis clinic. My 37 yr old daughter spent 8 months in the stroke unit last year and, as Hervey Bay is 30 mins from here, it would have stressed me out having to drive there sometimes 3 times a day. HB hospital has just opened a brand new Oncology unit this year but we will have 'til Feb 2016 for our first full time Onc to arrive. As you say, I think we are a bit behind the states in our treatments here...mostly because of the gov'ts rules and budgets.
Sheila.
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Leftfoot,
Praying for goog and happy scsn results for you. Positive thoughts anc prayers heading your way .
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To all of you ladies having scansvor waiting for results bestvof wishes.
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Had my abdominal CT today, so I should know by Monday whether the Xeloda is working on my liver mets. Thanks for your good wishes, Woody.
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Wishing you the best Sandilee!
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Hello, AussieSheila. Scanning after three months is what my onc does, too. Hoping you get great results! It's an interesting set-up you have in your town. You get input from different doctors.
Sandilee, I hope you have something fun planned this weekend to keep your mind off waiting for CT results.
Leftfootforward, when do you get results?
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Thanks, artistatheart and ShelandPony. I just returned from a tea at the Queen Mary in Long Beach, CA. It was lovely, and I spent time with two of my favorite relatives. I'm not very nervous about the scan this time. I just feel that it will be good. I feel it "in my bones," haha. Of course, it could surprise me.
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sandilee- Wishing you the best!
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leftfootforward-when did you have your liver surgery? My MO is presenting my case to the tumor board to see if I am a good candidate or not. I should know next week. What has the recovery been like?
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BabyRuth- it was in July. Recovery went well. It was a lapeoscipic procedure and they didn't have to remove the whole left lobe. I am just getting back to ab work and get full faster than before. I was more sore than I thought I would be but was off pain meds in three days.overall I didn't find it that difficult to recover from. Had to give myself blood thinning shots for 28 days sobruised easily. I can give more details if you want.
I hope they have options for you. They might mention ablation. That's a great option as well. Much faster recovery. Let me know what tumor board says. We can then compare notes.,
Best wishes
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They have talked about ablation so that might be an option. Were they able to remove all of your tumors and are you now considered NED? I would really like the surgery option but it scares me a little too. Once I find out for sure, I would love to talk to you in more detail.
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Dear BabyRuth,
Last April mum had a liver resection. According to scan and PET she had just one met. During surgery they found out she had 7 more lesions, all very small, that (for some reason) didn't lit up on PET and weren't visible on scan. Surgeon resected 5 mets on one lobe, but didn't touch the other lobe, so she was left with 3 small mets ( 7mm and 9mm). Total recovery took few weeks.
Since then, thank the Good Lord, nothing new showed up nor in the liver nor anywhere else and the 3 mets left are stable according to last MRi. And I pray God that Kadcyla will keep working for a very long time.
I hope I have been helpful and if you need more information just ask.
Prayers to you and all your family
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Worrieddaughter91-Thank you so much for sharing your mothers story. It sounds like she is doing really well and I pray that she remains stable. I will find out later this week what the doctors recommend. Prayers to your family also.
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I just had my CT scan yesterday's I will know hopefully bybtuesdsy if my liver is NED. I only had one tumors that they removed all of and there wasn't any other cancer they could see during the surgery. I am hopeful that I am NED. Let me know when you hear what they think would be your best option
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Leftfoot, good luck on your results , we await your post with hopefully good news.
Babyruth, i hope your doctors make the roght decision for you and get you to NED
worrieddaughter, i hope kadcyla keeps working on keeping your mom sable.
Prayers to all of you ladies have a nice weekend
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Oncologist just texted " scans good" so I am assuming there was NED in my liver on the scan. don't have details. See her tomorrow. Glad she let me know today. I am also assuming the US they did on my thyroid was fine. I am breathing al little better.
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Just received my CT scan report. Stable, with slight decrease in liver mets. (from 2.3 to 2.0) I kinda wanted more dramatic results, but beggars can't be choosers, so I'll take it. As long as things continue to go in that direction with Xeloda, I will happily stay on it, in spite of mild HFS.
I see my onc tomorrow, and I imagine he'll say, "stay the course."
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leftffootforward and sandilee- Congrats on the scans!
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Leftfoot, yayyyyyy for you scan results and thyroid US . i am very happy for you i hope you stsy NED for a very longtime
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Sandilee,
Happy you have stable results even tough you are disappointed about the tumor's reduction, but give the medication some more time. The important thing is you are stable. Congrats!
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Congrats to all the ladies with the good scans!!
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Yes Sandilee, stable is good! Here's to massive reduction on the next round. Left foot that awesome. Hi Woody, hope all is well!
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So glad to hear about all the good scan results!
Leah
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I am good artistheart so far thank youbfor asking. How about you? I hope all is well.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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so happy to hear good news on scans. Wonderful👍👍
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Woody, I am very well so far. Starting my 3rd round of ibrance/Femara and hardly any SE's to mention. My first scan since being on this will be mid-Nov and of course I have high hopes! However, I have learned from all of you wonderful girls that if that is not the case, don't panic! Just figure out what's next. Thanks! Best to all!
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I just met with my oncologist after my first-round treatment PET-CT scan. I was on the Cleopatra protocol - Taxotere, Perjeta, Herceptin - for six rounds. I had several small lesions on my liver when I started treatment. Now they are gone! Also gone is the cancer activity in my lymph nodes. All that remains is some low-level activity in my primary breast tumor - max SUV 3.3. I will be on Herceptin and Perjeta every three weeks, indefinitely. The doctor thinks the Herceptin-Perjeta treatment will take care of the breast. Another PET-CT in four months. Fingers crossed.
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Artistheart, this is great, i hope you continue to feel almost no SEs , keep your good spirit and we will wait together for your scan results in november. 11 of November will be meaningful to me , i would have passed one year with NED, my next scan will be end of December. I will keep my fingers crossed for both of us. Till then my prayers are for sll the ladies on this board because they are simply amazing. I will be thinking of you and wishing you wonderful scan results.
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Hi all
First, congats to all that had good scan results!!!!!
This is my first posting on this board. I found out on 10/1 that my BC progressed to my bones and my liver. The spot on my liver is 1.5 cm. I just had a liver biopsy last week and am waiting for the results to see if it's still ER & PR+ and Her 2 -. I was on Ibrance/Femara but obviously they weren't the right meds for me. Will be going into a clinical trial at MSKCC for GDC 0810-(think it's the same as ARM810.) Not sure what to expect, what to ask, etc. MO said no chemo and no radiation at this point though I'm not exactly sure why other than she said it's so small and they hope to shrink it with meds.
Any input would be great!
Babs
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Good luck, babs. Please let us know how your biopsy results turn out and if there were any changes.
Also, keep us posted regarding your trial, if you do it. I'm not familiar with GDC 0810 but would be interested in knowing more. Ibrance/Femara failed me, also. Faslodex did work for 3 1/2 years until progression to my liver. I'm not on Xeloda and doing ok, but would love to hear of some more non-chemo treatments.
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Thanks Woody, I'll be thinking of you too! I would like to hear fro more ladies with liver mets for whom Ibrance/Femara has worked? Seems like I hear of a lot of failures, including Babs and Sandilee ( so sorry ladies...) Good luck Babs with the trial. Luckily the tumor is small!
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Congrats scrunchthecat! I also recently finished my taxotere, carbo, herceptin and perjeta and had a really great response like you! I've been on the herceptin and perjeta for 4 months now and it really is very easy. I ended up having surgery on my breast and liver and am now Ned. It sounds like you will be there soon. I just finished my last radiation treatment and am free (except for h&p every 3 weeks) until my next scan in 6 months. It really feels good to have some of this stuff finished up for now. Congrats on your great results... I hope you can do something fun to celebrate.0
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Scrunchthecat , congrats on your results , i hope you continue to do well on HP alone. I did the same combo , it started last november and after three month i got complete response thanks be to God . I have been on HP alone since almost six mothns and will continue on the like you for as long as they work. I praynit continues to work for the both of us and ple ty of other ladies.
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Thanks, everyone, for the nice comments. Keep posting your progress so that we can all compare treatment and effectiveness.
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Hope. Thank you all for good news on great scans. I progressed in liver on lxempra but just finished first cycle (3 weeks on one week off) of gemzar. (next week is off week.Mets in kidneys and liver. Good news is after only two gemzar my kidney function (creatine) is normal which hasn't been for 4 months. Thinking gemzar is doing its business in liver and belly. No scan for at least 3 months. Haven't seen TMs yet but feeling like they are coming down. Liver met biggest is 4cm X 4.9 cm. plus lots of little ones. Following thread closely. Praying for all of us. Liver enzymes and AP still in normal range too.
Everyone take good care and keep on. Yep ⚡️⚡️💐💐👊🏻
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I just finished my 2nd cycle of Ibrance/Femara combo, now on my off week and hoping to get some good news next month wehn I get my PET/CT! So glad to see people getting good results, but also nervous about Ibrance working, my TM's went up last month!!
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Diana, i am so sorry for your progression on Ixempra but i am glad that Gemzar seems to be working and that your kidney function went back to normal. I pray in few month you will gobback to stable. Hewling thougths and good vibes heading your way.
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Mama2twins,
I wish you good luck on Ibrance/femara , give it some time to work. Prayers.
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thanks woody. You are so supportive. 😘
I have good feeling about this gemzar. I know it has helped others.
Like I said. I follow this thread. Only best wishes for us liver metsters. Pow cancer.
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Yes Mama give it time as my TM's went up the second round too. I start my third round tonight and get another blood test Friday so we'll see. A lot of people don't think TM's are very reliable. Congrats Scrunch, that is good news. Best wishes Diana, I am following this thread closely too. Having liver mets scares the @#$% out of me and it comforts me to know how people are dealing and where they go next. Woody I hope that HP works indefinitely for you. Best to all!
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thank you artistheart , i hope it does too infinity scares me but i will settle from year to year
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My onc called today - PET was yesterday. He said I should come in for blood test so he could determine what new tx should be. He didn't give me details and I'm not ready to hear them yet. When I got there, there was a note with the blood test script saying I should make an appt for Sun morning (don't panic - first day of the work week here in Israel) to start new tx. I still don't know what it will be. I emailed him to ask and also told him "I know coming chemos are tough,. Well, I'm tougher". In case he was debating based on SEs.
I'll let you know details when I know them. DH and I are going away Tues-Thurs so don't get nervous if I don't post before then.
Leah
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I had liver ablation in dec and the worse part was giving myself those blood thinner shots everyday. My stomach had prickly bumps all over. The surgery itself went very well no real pain that I can recal
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Leah,
I hope and pray your PET results are not drastic and i am really sorry you have to yet through another tx. I hope he has a good option for you and pray God it is the right one.
Enjoy your trip your DH and please keep us informed. Sending you healing thoughts and strength.
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Thanks guys for the kind words! I have my blood redrawn on 09/30 and am trying to stay positive and calm. I am so glad to have others to relate too, makes you feel less alone!!\
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Dear all,
Mum has just had her 7th dose of Kadcyla and next week she's going to have MRI. Scanxiety is already here, since last MRI showed stability in liver, but a couple of lymphs in the sternum area a little bit enlarged (about 12-13mm). They didn't show up in PET, but still... Her blood test are good but her TM are not reliable.
I pray God that Kadcyla is doing its job and keeps working for a long time, since for mum its SEs are not too bad. But I keep thinking about those swollen lymphs...
Prayers to all of you, especially for who's having a hard time and is going to change therapy
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Have a great trip Leah and rest your head for those 4 days. You can do this....
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contemplating taking a break from my xeloda. I've been in it for Almost 3 straight years. The fatigue is getting to me. I am in herceptin so am entertaining this thought. Wondering about others experiences on chemo beaks.
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leftfoot,
I do not know about that others the only time my onc gave me a break was when they could no longer administer the mes because of low blood s time around i asked my onc if i could stop perjeta sometimes in the near future, both my oncs had the same answer. In cancer in gemeral and stage IV specifically if something is working and holding the disease we do not change it. So you have to discuss this with your onc in depth and see its advantages and disadvantages. I hope you make the right decision. Hugs.
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it was actually suggested by a new oncologist. I am thinking about it. I never thought I would consider it. I have always said if it aint broke don't fix it. This has been my motto. I was surprised when she suggested it. But I do know that some women stay on only Herceptin and do ok so it is worth thinking about.
thanks for your input
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So my liver enzyme numbers have gone up but my tumor markers have gone down. So my Onc pushed my scans up to Thursday instead of the 19th. Anyone else have this happen and was it found to be an SE of Letrozole or Ibrance or was there progression? I have read a few postings and a few online reports that say Femara can cause this....
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just joined this club yesterday. after having some pain i thought was gallballder, no such luck 2 spots on lung and one on rib. Liver seems to have joined the party as well. Cant say much yet, had a biopsy today of liver. results maybe tues, maybe weds. Of course now I am back to what can i sell and where should i go live. I guess i am not so much worried about bone as the liver. can we treat this as a chronic disease? I almost made it to five year mark, This cancer sh&t sucks so bad!!!!!! I am going to try the herabl side of things and see if that helps. Meantime would like to hear some encouraging stories. PLEASE!!!!!!
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artist
Not unusual for liver enzymes to elevate from tx. TMs are different for everyone ; are your TMs generally spot on? Probably depends on how big the elevation is on liver enzymes but a scan seems like a good call to take a look.
Livin
Lots of liver metsters here and doing well. Options for tx too. I know very scary to have cancer in liver but often times tx shrinks the lesions and people do well. This thread has good info for us.
Woody is right. If stuff is working you stay with it. Until it stops working or SE's are a reason to change Tx.
Not sure how I am doing on gemzar but TM's dropped 400 points after 3 gemzar's. No scan until December or January. I think the drop in TM is good sign.
Hope all is well. Good scans and not too bad of SE.
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Diana wowwww wonderful news ! Your tms dropping on Gemzar hopefully this will mean you are responding to treatment, i pray you get the confirmation on your next scan
). Artist
Like Diana said it is not unusual to have your enzymes elevated on a new tx. If your tms are reliable than you have good news.
Livin
I am so sorry you have joined the club of liver metsters, even though liver mets are not such good news and are worse than others, still there is hope and there are treatments to which your body will respond. In January i would finish my second year after liver mets . There are others who passed longer and much longer than this. I hope you are of the latter and wosh you well.
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Thanks Diana and Woody, I'm trying to work the scanxiety down to a better level. I have only had my TM's checked twice, once at the begining and once now, so haven't really developed a trend yet. My enzymes jumped huge though. From 14 to 253 and 26 to 150. Hope it's the tx. I'm trying to time the results call right to minimize any possible bad news trauma to my psych. Friday by phone from a Onc I don't know, go through the weekend with DH or Monday by my own Onc and possibly call into work sick from upset. What am I saying??? Think positive, think positive!! Good news Diana, keep it up! Thanks to you and Woody. Welcome Lvin, you will find this site tremendous support!
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Waiting to see if cancer changed to herz neg. Should be starting treatment this week. Chemo first for liver. Multiple lesions, Dr hopes to bring markets down after first couple whacks with chemo. Ugh..... I'm scared and hopeful. Hope, hope, hope
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lvin
My TM came down 400 points on gemzar. Had success with taxol a year ago. I believe in chemo and once you get started you will feel a little safer knowing you have cancer killer on board. Hang I there.
Diana
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Sorry to jump in. I have a question about back and side pain from the liver for those of you who experience pain from your liver mets. Is the pain constant or do you only feel it when you move like a muscle pain?
Many thanks!
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Got back my liver biopsy results. It's ER+ PR+ Nu2- same as my initial BC.
Hoping the GDC 0810 works!!!!
Babs
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golden
I've not really had pain from liver mets. The only place I do have pain is top of lobe where lesion is. No back, side shoulder aches but some people do.
Good luck babs with GDC.
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GoldenGirls, I know well how every ache and pain can provoke anxiety about cancer. But there are a lot of other less serious things that can cause pain, and I hope that is the case with your mom. To answer your question, for what it's worth, here is my experience with side pain from liver mets: Before the liver mets were discovered and treated, I had maybe three episodes of sharp side pain that lasted for about two or three days, then went away again. During these times movement did make it hurt more. I also had days that I felt a dull ache just below my sternum, that hurt when pressed. My liver enzymes were in the normal range, but if any doctor had poked me in the liver during those months, I think the mets would have been suspected sooner. I bet different people would have different answers to your question. With your mom already having a stage iv diagnosis, they will scan her liver if she has symptoms, right?
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GoldenGirls, like Shetland my doc suspected something was up as soon as he felt my tummy and noted that my liver was swollen though I had no idea. I'd had some twinges every now and again but I wouldn't say they were painful. They came and went whether I was moving or not and continue to do so now I'm having treatment. Initially I also got right shoulder pain which is also indicative of liver problems but they went away shortly after treatment started. I think as we get older we all suffer from aches and pains but anything that is persistent should be investigated for sure
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Goldengirls,
I have had an upper abdominal side ache and shoulder and back ache since i was first diagnosed almost 5 years ago. Just last week i had an xray to both my ribs and sides and nothing showed. Nothing is showing on PET and i am currently NED and considered in remission. A week before that i had an xray to my knee which was hurting also it. Turned out i have a bad case of arthritis , nothing to do with cancer. So your pain may not be necessarily related to your cancer but it can be related to treatments, age, weight and so on... I hope it is the latter , it is better to investigate then worry or wonder. I have the same pain you have and i have no liver mets at least not one which are seen. I hope you soon have a clear reason.
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GoldenGirls - for me the pain has varied a lot over the years. Mostly, I'd describe it as a dull ache, just a 2 or 3 on the pain scale, so I hardly even notice it, but occasionally I've had sharper pains, mostly in the top of my right shoulder. Nowadays, I have liver pain more frequently and it is actually in my liver, as well as my back and right shoulder. I also have chest pain on the right side, which I know is referred pain from my liver - it comes and goes.
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Ladies - I'm joining you here on this thread. I read it all the time - not sure why I'm only just now posting, but anyway here I am. :-)
I've posted updates on other threads, but basically I've recently started adriamycin and it seems to be going pretty well. I actually feel better now that I've been on it for a month, so I'm feeling pretty confident it is kicking the cancer back. My liver feels less full and I'm actually able to eat a regular meal without feeling completely stuffed, so that has to be a good sign.
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Welcome, Nancy. That's great that you are already feeling better on adriamycin!
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HI, Anyone on here on Afinitor and Aromasin? I have liver and bone mets. I have been on Afinitor and Aromasin for about 2 months. We have uped my dosage from 5mg to 7.5mg and now I am on 10mg. My TMs and liver enzymes keep going up. My TM's are actually scary high. I have heard that this means the meds are working, or that it could be a flair. Just looking for other people with same mets on same meds with similar issues.
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Big hug to all my mets sisters this morning! I keep each and every one of you in my thoughts and prayers daily!!
Alissa
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As of now I've had no liver met symptoms. I have the natural aches and pains of a 66 year old- one with bad knees!!!!
Bab
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Nancyh,
Welcome to the thread and i am glad you are feeling better on Adrya lack of fulness is a good sign . Hoping you continue to improve.
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Thank you mama2twins, you are also in my prayers ..
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Sonya,
Tms sometimes go up on new treatment, and the reason could be either working or not working. But with A/A. Ii is a possibility it is from affinitor. A lot of ladies took this treatment you can check with them on the thread affinitor/ aromasin here on BCO . I am sure you will find a lot of useful information. Good luck to you.
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NancyH, that is good news. I definitely think that is a great sign! I hope you get a very long run with that.In the beginning I too felt some sharp shoulder pain for a very brief time. Weird.....Now I can feel something in my side like occasional sharp little jabs but only here and there and nothing painful. Sometimes just a "fullness" feeling. But my enzymes went way up so we had my scan pushed up to today, two weeks early. Results on Monday..Hopefully it's the meds fault and the jabs are tumors dying off. Woody, may you enjoy MANY years of remission! babs, I think we all have those natural ones!
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Hi everyone. First time post
I was dx with secondaries in my liver and bones in 2012. For the past 20 months I've been on Carboplatin and Gemcitabine and my liver cancers have decreased in the past 6 months but within the last week my tumor markers have gone up from the 100's to 500's. At the end of November I'll go onto Paclitaxel. I have never had any pain in my liver or bones.
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I haven't been on many of my favorite threads for a while....I go to the main page & find so many topics that now I've fallen behind on keeping up with my liver mets sisters. I know there are new gals here...and Nancy, our heart & soul of not letting mbc stop life from happening!! I've missed keeping up but not missed thinking about you all, every day!
I never felt liver pain, even with a liver filled w/tumors. I hadn't felt my best but I had had diep flap 6 months earlier, worked (part time) and played w/grandkids, etc so until my bp started going haywire & was fatigued, I didn't know what was up. I gained weight & had some constipation...I don't know if any of it had to do with a struggling liver, I just knew things weren't normal. Then I had regular 6 month scans (my last dx had been 1.5 years earlier & scans 6 mos earlier were clean). This disease is so complex ...wish it were like measles...something you can see & a slam dunk to treat :-(
Yes, Artist!!! Hoping Monday's results show meds are busy at work!! Nancy...thank goodness for Red Devil (never thought I'd give it 2 thumbs up!)....My Sister Woody, missing you...I'm going to better at keeping up! I've been feeling good & being "used & abused (LOL)", which I think is a good sign. Babysitting, working at GS's school...now playing piano for Vetersn's assembly at the school concert...egads...finger neuropathy, poor vision & not playing much for 10 years means I hope the kids sing LOUD. But life is good...prayers for all to feel that in their hearts!
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I"M A TRANSFORMER!!! My cancer has changed genetically to a third type, opening new therapies.
I was diagnosed stage IV in 2011 with mets to sternum and lungs. Got to NED. been through 4 treatments that all worked for approx . a year each. Now I have new liver mets. They are small, but I pushed for a biopsy…..and got a surprise! My original Stage II cancer in 2002 was triple neg. In 2011, I was ERPR+, HER-. It has changed genetically AGAIN, which is why anti-hormonal therapies stopped working! Now it is ERPR- and HER+. The good thing is that now I can try the HER2nu targeted therapies! I start Kadcyla Monday!Hoping for good things!
Julie -
I'm calling you Ms Optimus!!! Welcome to the world of monoclonals!!!! May kadcyla bring Ned into your life!!!!
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Thank you all. My mom can be stubborn when it comes to seeing the onc about symptoms. I think it's a combination of fear and just not wanting to make a fuss. I know these symptoms scare her, but that's exactly why I think she should do something about them -- even if just for peace of mind.
She's been having bloating and feeling very full with even the tiniest amount of food. She's lost weight and has pain in her right side, closer to the back just below her last rib. It hurts when you press it and she says it feels like a pulled muscle, but it's not easing up.
She was borderline anemic before she started a new chemo last week and had just completed 10 rads to sacrum and L1. The weight loss and loss of appetite can definitely be from the anemia, but the pain and bloating has me very concerned. All of the other pain she was experiencing from her bone mets disappeared the day before starting her new chemo (go figure!) but this one in her side and back remains as does the bloating, burping, feeling full, etc.
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Hi SmileyKy from a fellow Aussie, I'm also doing the Carboplatin Gemcitabine combo just finished my third round and due a scan soon. so far tolerating it quite well but have you been on it for 20 months without a break? how long were you on it before you saw results? My onc wants to give me a break after six rounds as its so hard on bloods and can also affect kidney function. However he seems to be of the school that says if we don't get results straightaway he will move on to something else. Seems these things should be given more of a chance to work. So far my bloods and kidney/function are good. What do you and others think?
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Artist,
Thank you so much i hope so too. I hope you get good results on monday , my prayers are with you please post when you can.
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Smiley,
Paclitaxel is an efficient chemo to manage cancer, i hope you get a good run on it and for a longtime.
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Jnh,
Your transforming is good news in the matter of more options. But i am surprised at the choice of Kadcyla as a first line treatment for her2 + . It is really questionable since it is all over the net that the first line treatment for her2 and the most succesful now up to date is Herceptin/perjeta/ taxotere. You see i am a transformer too and an unlikely one since i am ILC . but all of my oncs and there are four of them opted for the one I mentioned . And they were right, after three months of treatmen it got me to NED and that was a year ago. My advice to you is to ask your onc why he chose kacyla? And why not Herceptin/perjeta taxotere? After six months on taxol i was put on herceptin , perjeta only every 21 days till now. Please ask him and insist on using this combo first. As kadcyla has some success stories but not nearly close to H/P . Good luck to you.
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Ronnie, it has been a long time , but i new you would be busy on being used and abused hahahahaha. I knew you were well but i have missed you . I think what you are doing is a great time spent and good for you as i am sure it is also exhausting but good exhausting lollll. So enjoy my froend and God bless you
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Golden,
It seems to me that your mom's loosing weight and bloating is not due to anemia. You do not have to be thin to have anemia and it does not make you feel full . Anemia is very tiring and causes sleeplessness. Not what you mentionned. I was on carbo/gemzar for six months and it was very damaging to my blood with very little effect on my liver mets 20% dicrease only. And three months after the cancer came back with vengeance spreading to my bones as well. Liver mets rarely cause pains, it is usually the abdominal area which seems to suffer with fullness bloating which causes a little pain onsides and stuff. Please check with your mom's onc and have her scanned just to make sure there is no progression. My prayers are with you and your mom. But please do it.
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Isy,
Welcome back i have not seen you post in a while. I am glad you are well . My onc told me before we started carbo/gemzar that the maximum he can keep me on this combo is 8 cycles. I barely made it through six. The last two cycels where reduced. As they damaged my blood and my platelets greatly. After this my onc decided not to do the extra 2 as he said it may be irreversible. So be careful for signs of extreme fatigue, tiredness also blue spots lik needles on the skin caused by low platelets even if i scratch. Well it is time i do not wosh to remember. I was scanned after three months of the treatment and they new from the results how much the effect will be. So after six it was discontinued. I hope it is working for you and that it dicreased your tumors greatly but evenif it is so, you cannot continue in it forever. He / she have to have a second plan for you in case you responded to keep you stable and if God forbids you did not to start you on a new one.
Please forgive me if i sound strange on carbo/gemzar i do not mean to be patronizing , i just heard the same thing from three different other oncs and other ladies. I want you to be aware so you can make an informed inquiring to your onc.
Healing lights and prayers go out for you. I hope you get good results on this combo .
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Hi Woody
We e been without internet for a while, the modem went kaput you can't believe the near riots it's caused in the household. Never mind kids, us adults just can't survive without it either. Not having my iPad at my side felt like me right arm was missing. Sad I know. You are just great Woody. i so appreciate you replying with such detail to everyone individually. You are so giving of your time and knowledge which is always spot on.
Both me and onc are being very vigilant with my bloods and kidney function but saw him today, everything is good, even liver function has improved. Vitamin D is a bit low so good thing the summer is coming here and I'm near the beach! I'm feeling good on this chemo, been doing some voluntary work. In my former life I taught English and citizenship to migrants. We have several hundred Syrian refugees arriving soon to our town and I'm glad to help out while I feel so energetic.
My onc said he would assess after six cycles whether to continue because of said side effects which is why I was so surprised to hear Smiley say she had been on it for 20 months, maybe on lower dose?
Glad to hear you're still doing so well and SOOO happy to get my iPad back!
Xx
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lolllll being without internet is a disaster to me also. You see i have this thing as soon as i wake up i check in here to see how everyone is doing , it is a rituel to me lolll. So i understand the frustration. I am glad your Ipad is back too , i cannot live without mine lolll.
I am sure Smiley is getting reduced dosage but even with this she cannot continue on it. As for you i am so happy you are feeling well on it and i hope you keep this energy. I am sure your doctor will k ow when to stop after assessment.
It is so good of you to spthe nd time with refugies to help them cope with a new country and a new language. Also it feels soooo good when you help others because you feel you are making a dIfference and it also it keeps your mind away from cancer and this beats the stupid cancer.
I hope life continues to be good to you and pays you back your kindness. Keep me posted. As always my prayers are all with you and all the ladies on this board.
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Hi All. I posted in a different thread but thought it would be helpful to also post here. I have just been diagnosed with liver mets, and am wondering if anyone here has declined or stopped treatment, and what that has meant for you.
Also, has anyone has severe stomach problems from liver mets? In the past few months I have had trouble eating, I feel full all the time so don't want to eat. I also have constant diarrhea, lower abdominal pain, nausea, and have lost a lot of weight from barely eating. This is actually how they found the mets, from a CT. However my doctor says that she doesn't think these symptoms are caused by the liver mets, as they are still quite small.
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dblc,
I am sorry you are here , it certainly isn't easy to find out your cancer has returned . But it is not the end. Your case is similar to mine . I am also ILC and HER2+ upon my reoccurrence. Some people do refuse treatments yes, but after a long battle. I did have a lot of digestive problem before my liver diagnosis and it disappeeared after treatment. The sense of fulness does comes from liver mets and the inability to eat. I had an extreme case of acid before i was diagnosed and irregular stools also and was loosing weight. My liver mets were too many with one larger . Frankly i do not think size matters.
I am sure your onc knows better than me, but to me what you are feeling are related to your mets. Even though your liver enzymes are still normal.
But i want to tell you and ask of you kindly to reconsider before you refuse treatment. When my cancer changed to HER2+ i was offered herceptin/perjeta/taxol. After three months i was clean and i am still clean since a year , thanks be to God.
I hope you and your onc reach a decision and i hope it is the right one for you. Stopping or refusing a treatment is a very individual decision. If you respond to treatment you may be able to buy more time. Stopping the treatment will entail treating the symptoms and letting nature takes it course and this also depends on your type of cancer and how fast it is spreading. Time is not the essence in this case as it depends on each individual and no one can predict any turn of events not even your doctors.
I hope you take your time and make the right decision for you. I pray and wish you health and long life.
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thank you very much Woodylb for the response. I feel better that I have an understanding of why I've been having so much trouble eating.
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Hi Debic
like Woody my liver mets also caused digestive problems, bloating, diarrhoea loss of appetite etc and it was those symptoms that took me to the doctor initially. The symptoms persisted with my first chemo Abraxane which is known to cause stomach upsets but it didn't work for me anyway so now on gem/carbo combo which has cleared the bowel problems. Our bodies often have a funny way of showing us there is something wrong and without those symptoms I'd probably be sitting here blissfully unaware that the nasty C was growing inside me.
If you read through this thread you'll see there's loads of options and lots of people doing really well with liver mets. All the best to you whatever you decide
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Hi all! I have a few questions please. I have also been dx'd with liver mets. More than 75% involvement in my liver, one in L lung, R breast and so many lymph nodes I lost count. Saw my MO in March and she found nothing. I found the breast lump in August and was scanned to find the rest in September. I did have liver pain and enlargement that I could palpate. The pain was exactly where Golden's mom describes it, and also had the fullness and bloating that she describes. I went to my PCP and she said I had lost 10 pounds since I last saw her. I have since lost 5 more without trying. I am not overweight and realized pants fitting looser, but abd girth seemed to not change. I believe it was there since a small spike in TM's in January. Anyway, I was interested in Woodylb comment about the first line being Kadcyla, as this is the drug my MO chose to start me with also. As I see in jnh's profile, she has rec'd a taxol (taxotere) for the original treatment. That was my original also, so I was told by my MO that was why she chose Kadcyla. I have had two tx's with Kadcyla and so far I cannot tell if it is working. She has said nothing about rescanning. When should that be done? And how long should this drug be given? I keep forgetting to ask this stuff. I do not feel a difference in the breast tumor. The liver enzymes initially dipped but my ALT is 958 now. TM's were down to 1650 from 2059 with the first infusion. Because of the liver pain, I am meeting with a pain specialist to be considered for an implanted fentanyl pump as I am allergic to all other opiod pain meds.
Wishing everyone a good weekend. Any input would be appreciated.
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Hi Deblc. You symptoms are the same ones I had along with some acid reflux. Thought I was taking too much anti-inflammatory for too long due to sciatica. My doctor's first thoughts were to change the anti-inflammatory and have an ultrasound because the symptoms were so similar to gall bladder symptoms. Had the ultrasound and went in to get the result planning to schedule gall bladder surgery. Wham - innumerable liver mets, as the pathologist said "too many to count". I have managed nausea with Zofran (worth its weight in gold), diarrhea and abdominal cramping with Lomotil, and pain with Hydroco/APAP 5/325 and Morphine when it is really bad.
I was on Faslodex and developed a couple of small bone met so Xgeva was added. Bone mets haven't been a problem and side effects were tolerable. Some fatigue and nausea but felt much better. After 7 months of Faslodex I was feeling worse so chose to add Ibrance. I am on my first cycle now and feeling better with no serious side effects yet.
I think a decision to stop treatment is a very personal one based on many factors. I've already told my doctor that I don't intend to go on any infusion chemotherapy. I'm not sure I will even try other oral ones if the Ibrance becomes intolerable or stops working. I am only 62 but have led a long and very full life. I don't have children or grandchildren. My partner of 36 years fully understands and supports the way I feel. If chemo is going to make me so sick that I can't get outside and do some things, walk my dog, etc. I will not use it just to extend my life 6 months or so. I have already made too many compromises like camping and hiking, managing my landscaping, etc. I guess overall I'm saying I believe in quality of life over quantity. My biggest regret right now is that I don't live in a state that supports assisted suicide. But, I just don't feel up to a move and I love my home.
I know many women on this board have very different opinions and have tried every available option and continue searching for other treatments and hoping for breakthroughs. They have been through some difficult treatments and never regretted it. I respect their strength and fully support their decisions. I equally support the decision of someone who declines further treatment. I think there is only one thing we all probably agree on - having metastatic breast cancer sucks. I wish you and all of the rest of us the best with the decisions we have to make in the future.
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Just a brief follow up I thought of concerning abdominal pain and diarrhea. Since I wasn't feeling like eating I was using a lot of yogurt and dairy based protein shakes for nutrition. My doctor suggested I back off so many dairy products and that has really helped eliminate a lot of the diarrhea.
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Sarah that's exactly how they found my mets too. CT scan done due to the stomach problems and being unable to eat for four months. I still didn't believe it was caused by the cancer after I was diagnosed, thought it might be ibs or something like that, but from the responses here I realize that it is a symptom. Even though my oncologist told me it wasn't. Why do these doctors never seem to know what side effects of anything are?????? I have learnt so much more on this board than from my doctor !!
I think we are very much on the same page re quality of life. I have read everybody's posts (in another thread I started asking about their experiences)over and over, and I think I really have decided no chemo at all. I kept a diary during my first set of treatments, and at the time I told my husband that I was never doing it again. I think you forget how bad it was, but that diary reminded me. I don't see the point of living like that. As you say, many (most?) people do treatments over and over and suffer the side effects etc. These are brave brave women. I am not so brave. So far, apart from the stomach issues, I am not doing badly. Mostly I am very tired and weak (probably more from not eating, than from the cancer) , yet I am SO TIRED of it all....of feeling sick . When it gets worse, and I know it will, I don't know how I will get through it.
Re assisted suicide....I feel very lucky that that option is open to me. I do not want any long drawn out pain and suffering, not to mention how hard it is on the family. My only fear is that I would get too sick to travel to take advantage of it, as I currently do not live in the country where it is available.
The truth of the matter is, I don't feel I have it in me to fight. I am SO TIRED!!! I can't walk two steps without being short of breath. I can't enjoy food, my stomach hurts every time I eat. I don't want to go anywhere or socialize with anybody, because I feel sick!!!! What kind of life is that??????
I strongly feel that part of cancer treatment should be to invent a pill that we can take to go to sleep and never wake up.....peacefully. I would do that right now, instead of having to suffering what I know is in store for me. Leave it up to us, make it OUR CHOICE, instead of having a doctor do it. It's our life..and death!!!!!
If they can't find a cure, then for God's sake, find a way to stop our suffering. They put animals out of their misery, it's so inhumane to let human beings suffer in some misguided belief about the "sanctity" of life.
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I am new to this site. And I would appreciate any input. Yesterday, (my wedding anniversary) I was told that I have liver mets. They are on top of my liver. My husband is currently deployed. I am in the Fort Drum area and the closest oncologist is 20 min away. However, that oncologist is a small practice and don't even keep online records. The best place for me to go to is Roswell Park in Buffalo but it is close to 4 hrs away. I just want to know if it's doable. How often are the treatments, how tired will i be, can I make the drive myself? Thank you again
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Liveformybabies,
I am really sorry for your liver mets , specially on your anniversary. I am not from the US but i do know the area and lived in New York longtime ago.
The first thing you have to do is have a biopsy done on your liver mets to make sure it is cancer and if it is the same type as your primary cancer. This is very important before starting any treatment. The second thing is that if it is cancer and confirmed treaments depends on what your oncologist decides to give you , but i can tell you that it will be in the least every 21 days and in some combos it could be weekly. As for driving that far it depends on how the meds will effect you as side effects varies between individuals. But you defintely need to start in a good centre . Stage IV cancer entails constant treatment with maintenance treatment. It is for as long as you live and respond to the treaments.
It would be much better if you are able to be closer to a good hospital. I hope my answers helped. I hope more than the biopsy denies the liver mets and if not do not be afraid there a re a lot of efficient treatments and you will make it. My prayers are with you and your family.
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liveformy babies,
Would it be possible to go to the larger center for diagnosis and treatment decisions, and then go to the local doc for treatments and follow ups? Four hours sounds brutal. I'd probably start with the local onc, see what they say and then go to the big center for a "second opinion." If there is some way that the offices could work together to compliment each other, that seems like the best way to go.
Also, I'm not sure that a biopsy is always necessary. It might depend if the treatment suggested would be changed if they found out it was a different type now. I didn't have one because my on was going to start me on a chemo regardless, as my previous hormonal treatments failed.If this drug doesn't work, I will then have a biopsy. If it does give me stability, we may try another hormonal to see how that goes.
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I haven't posted about the PET results or new tx because, quite frankly, the results were bad and I just couldn't talk about it.
Before the scan, we already knew from bloodwork that Doxil wasn't working (TMs up, liver function way off). I got a phone call from my onc the morning after the scan (and that's NEVER a good sign) asking me to come in for some blood tests so he could make a final decision on my next treatment. When I got there, there was a note on my file saying I should make an appt for new treatment Sunday (this was Thurs, weekend is Israel if Fri-Sat). I got an email that night from onc saying we were trying a new approach, called metronomic therapy. It's smaller doses of a chemo cocktail given at more frequent intervals. So I'm getting 4 chemo drugs (cyclophosphamide, methotrexate, fluorouracil, vincristine) plus steroids once a week. While I was having the first one 2 weeks ago he came in to talk to me. He told me he was worried (and that's something he's NEVER said before). I got the feeling that one of the reasons for trying this approach is that it's easier on my liver to have the smaller doses - and my liver is in bad shape. I decided not to ask more questions because I couldn't handle any more detailed information. It seems this is a good combo for me. The DAY AFTER my first treatment with this I was already starting to feel better. I'd been having a problem with eating - even if I only ate a small amount I would start to feel overwhelmingly over stuffed about 1/2 hour after I finished. By the day after the first treatment that feeling was GONE. I'm also able to eat a bit more, which I need to do. I also have a bit more energy. I had the second treatment last week and continue to feel better (next tx is tomorrow). Onc says my liver functions look better. There is also a place on my liver where I could feel the tumors - it's between my ribs, near my stomach, hence the trouble eating - and I think it's smaller.
Yes, that overstuffed-can't-eat feeling is from mets. Onc was glad to hear eating was a bit better.
The quality-vs-quantity of life is such a personal thing, especially since everyone defines quality of life differently. I spent this last weekend with 2 of my daughters and their families (that's 10 of my 11 grandchildren!). Even though my energy levels are better, I still can't do a lot. But there were hugs and cuddles, and I spent a lot of time watching them play and it was PURE JOY. You have to really think what gives you JOY when you think about this disease.
Deblc, there is another thing to consider. You feel awful now because of the disease. What if you try tx for a while? If it works you could feel better and able to do some things you can't do now. If it doesn't help or gets worse you can stop. You won't know until you try.
Love to all.
Leah
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Leah
It does sound like therapy is killing cancer in your liver. Especially since you can eat a little bit. Your onc really is finding ways to help you.
Pure joy really is our loved ones. That is what keeps me focused. Happy you were able to be with family. Hugs and comfort goes a long way.
Sending you only good thoughts Leah. You've had a good response with new treatment. Hugs.
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Leah, I am so glad to hear you are feeling better and were able to spend time with your family. It sounds like the new Tx is working and I pray for NED for you. Your positive attitude despite such bad initial news inspires us all. Hugs back at ya!
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Liveformybabies, as far as driving, it depends on what kind of treatment you have. I think Sandilee's plan above is a good one. Here is a link to the American Cancer Society's Road to Recovery program, to help you find rides if you need them. Also, the hospital social workers may know of resources for you.
http://www.cancer.org/treatment/supportprogramsser...
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Leah, thank you for your post and may you continue to feel better and better.
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Leah,
I am so glad to see your post and it is really appreciated that you posted , it may help a lot of other people. It sounds like your onc has a good combination which seems to be working for you since you already can eat better , this is very important to be able to eat so you can keep your strength.
Spending time with family is a wonderful thing it explains why we keep fighting. May you always be surrounded with such love.
I hope this combo keeps working until it gets you to a good place . My prayers are with you and wishes for continuing to feel better after each dose.
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Hi ladies
I have mets to my lungs. I had one tx of genzar and carbo. Then 2 tx of just gemzar because of my platelets being low. MO has suggested he give me a tx of gemzar and carbo once every three weeks because of my platelet counts. My platelets were down to 67. Have to check today what they are. But the pain in my right side (upper back and side and around to front) has been getting worse. At first I could just take 2 naproxens at night and it would go away and I didn't even need it every night. Now the pain is worse. I am wondering if I have bone mets too as they say you don't necessarily get pain from lung mets. Anybody?
Rosieo
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Roseio,
I assume you meant to type liver, not lungs mets. I did have pain from liver mets similar to what you described, though it's always possible it could be something else. My pain came from the enlargement of the liver and how it pushed everything else inside of me out of place. The back pain was from a pinched nerve I really think. Soon as the liver inflammation relaxed, back pain hasn't been a problem. Pains in front, upper right rib cage area gone too after a few treatments (also gem/carbo.
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I am on Letrzole/Ibrance combo with the third cycle almost done. I have had a few twinges and aches in the right rib cage which kind of come and go. My liver enzymes are elevated a lot so was feeling a lot of anxiety. I was convinced things were progressing. My Onc decided to push up my scans. Today's results showed my TM's are reduced by half and all tumors have shown reduction in size and metabolic activity. She thinks the enzymes could return to normal on their own, it could be the meds. Just to be thorough she is having me see a Gastrinterologist for a second pair of eyes. So all in all a very good day. The relief is huge. Restores my hope and faith that meds can work and reminds me to not panic over one test result. Beautiful life goes on.
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Artist.great news. My onc is thinking Ibrance/femara too. Glad to hear it's working for you. Relief is right. Whew. 👊🏻👊🏻💃💃💃happy dance
The only time I have pain is after gemzar in the area my largest tumor is. Thinking it is from chemo killing the cancer with drop in TM.
Rosieo. Platelets dump on gemzar. Ask onc about a lower dose ? I'm sorry about your pain. Is it anywhere close to scan time? No scan for me until January.
Thinking about all liver metsters.
Hugs.
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Artist
So happy for your great scan results!
Babs
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Artist, glad to hear your good news.
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Artist,
Happy dance for you! Womderful news , God bless.
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Diana,
I wish you luck on Ibrance/Femara i hope it gets to a good place so thumbs up!
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A happy dance for all of you getting great results from your treatments!
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Artist,
So happy to hear your results!! Hugs!!
Alissa
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just said goodbye to my oncologist of 5 years. Very weird feeling. Sitting in the infusion chair for second to last time. It's hard to say goodbye to thevkniwn and convienent. But I have faith my new doc and treatment center will take care of m
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Left, my oncologist is leaving the hospital, too. And yes, the feeling is very weird. I still don't know if I'll follow her in the new place or will stay in the current hospital with other onc. As I'm on Xeloda and am visiting the center once in month, I don't rush with the decision.
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Diana, I hope this combo kicks butt on your mets and thanks for the happy dance. I do think there is something to feeling pain in the area meaning the tumors are shrinking or hopefully DYING off. Because I can still feel twinges but got good results sooooo.....Thanks ladies! Love the Peanuts dance! Leftfoot and Kiss, I hope whatever happens with a new/old Onc is a step forward for you both. That would feel very weird. EVen after 3 months for me I didn't want to get results from another guy on the phone..
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I'm actually staying on gemzar at a lower dose for one more cycle and see how I do. Declined chemo today because this chemo has caused fever, rash and drop in red cells. My body needs to recover.But since I had 400 points drop in TM decided to give gemzar another try at lower dose. If I continue to have horrible SE then will switch to Ibrance/femara.
Just wishing all drop in tumor burden , good scans and no SE's that aren't tolerable.
Diana
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Leftfoot ,
I am sorry your usual onc is no longer available , it is hard once you get used to someone, maybe you can consult with him via phone or mail on important matters. I hope you feel as comfortable with the new one.
I will also be away from the onc who and the hospital in which i have been treated since my first dx and i am very close to him. But i am going back to my country where i have already on onc there but i prefer the old one. So we decided i will contact him everytime i need him and i willbe sending him all my results. So i hope it works for all three of us, you, me and kiss.
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Diana i am so sorry carbo/gemzar is doing its number on your blood it is really bothersome specially when your tms are dropping. But i had the same thing and i barely continued the tx till the end the last two where reduced doses and i skipped a couple of times due to low RBC and plateletsand had one blood transfusion.
I hope you are able to continue on Gemzar and get some benefits out of it.
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Diana, I hope the loser dose works so yo can stay on it for awhile. And I wish the same as you that everyone sees an improvement with little SE's. Woody, it must be a nice feeling to return to your country although leaving a good Onc is difficult. It's nice that you have a relationship that you can continue from a distance.
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Artist,
Thank you but i will be popping in every now and then to renew my residency since my husband is still working there , so i can actually see him and even have meds there if need be
) this makes me very happy. If God forbids things change i will not do anything without consulting with him first. I hope you continue to do well ). -
Hi everyone from a sunny down under. The Christmas lights go on in our town tonight but it's not quite the same when it's brilliant sunshine. They have to wait until 9pm to turn them on most of the kiddies should be in bed, lol!
I'm doing well on gem/carbo so far. My onc has tweaked the dose as my WBC was slightly off and it's done the trick. I don't even feel like I'm having chemo, no side effects at all except the usual fatigue which isn't too bad at all. The main thing is I have a great appetite, would hate to go off my food. Having lots of twinges in liver area but it does feel lumpy as ever. I've lost weight (despite eating like a horse) and seem to be able to feel every lump and bump. Though don't really know what's 'normal'. Just hoping the twinges are death to tumours but will know what's happening after next scan in couple of weeks. All the best to everyone, xx
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hello Isy,
I am glad you can continue on carbo /gemzar . The carbo makes you loose weight but not gemzar so maybe they are balacing each other. As long as you are able to eat and don't feel bloated or sick or constipated , it is a good sign. Do not worry about the lumps and bumps they maybe be tumors dying or anything else but not necessarely progression. So enjoy your xmas ligths in mid summer lolll and I hope the upcoming scan will put your mind at ease.
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Thanks dear Woody.mforgot to mention also that liver enzymes down to 290 from 450 previously so allowing myself to feel a bit hopeful. Have a great weekend
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Wonderful news !! This is really a good sign , I hope everything keeps plummeting yayyy. You have a nice weekend too .
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Isy, I'm so glad your tx seems to be successful.
And Artist, I'm late saying this but - delighted with your results!
I'm cautiously hopeful about my new tx. Onc nurse told me my liver numbers are down. I'll tell you the truth, I haven't seen any of my bloodwork results for almost a month (my choice - didn't want to see) but I think when I go this week I'll ask for copies. I've been feeling a bit better and eatiing a little more so that's good too.
For all of us - we just keep on keepin' on.
Leah
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Isy-sound like things are heading in the right direction-so happy for you!
Happy for you too Artist and for everyone else that gets good results
Babs
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good news Leah i hope you keep feeling better and that liver markers keep decreasing. I am happy for you .
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Leah-great news!
Babs
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Dear all, we just got mum's MRI results. Slight progression of the three known mets (they are less than 2 cm) and three new mets (smaller than 1 cm).
Oncs decided to stop Kadcyla and start Afinitor/Aromasin. I'm quite worried for this combo, since I read about very unpleasant/bad se. Moreover I really don't get their plan. They gave her Kadcyla (even though according to her latest istologic exam she is ER 90% PR 10% and HER2 neg (FISH)) and now this...
I'm so scared by this situation... It's so hard to be strong when you know that there has been progression.
Do you have any advice or experience to share?
Prayers for you all
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Worried daughter-
They are switching to drugs that work on hormone receptive cancer. the previous drug she was on is used mostly for Her2+ breast cancer.
I was told that drugs for hormone sensitive cancer and her2+ cancer don't play well together I.e. You treat with one or the other. I am assuming they are changing back to drugs known to fight her hormone receptor positive cancer. They might be assuming that the mets that are growing are more susceptible to those types of drugs. That would be supported by her latest biopsy results.
I don't have hormone receptor be so can't speak about the drugs and SE that go with treatment but many members here can help with that.
I hope the new regimen shrinks the mets.
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Dear Daughter..I think there's an aromasin/affinitor site. So hope this takes care of the old & new buggers!
Leah...I'm incredibly happy you're feeling better & able to eat...keep your strength up for 11...oh my...grandkids!!! You are so blessed...and so are they :-). I have to say when I'm around the littles, my heart is so happy...definitely pure joy! I'm very touched that your onc was so open with you. Sounds like he searched for the right combo & found it! Prayers you continue to feel good & your liver heals!!!
Woody...I know both your oncs treasure you & you've been able to "bounce things off of each one" at different times, so hopefully that can continue!! Better yet...lets hope there's nothing to bounce off them :-)
Leftfoot...I hope you found a good replacement for your onc. I already told you how distraught I was when my onc was out on medical leave, after 5 years with her...and the fact that I feel so well cared for with my new onc. Hoping!
Artist...such good news...may it continue...forever!!!
Be well :-)
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Thanks Leah and Babs, my scans were good and TM's down but liver enzymes were up so Onc has me seeing a specialist just for another opinion next week. Also been feeling a little short of breath today after a marathon shopping trip so have to have that checked out now. Neve a dull moment darnit....Leah, that's good that numbers are moving down and you are feeling better! Isy, there is reason for tons of hope!
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So my liver enzymes are up again today so my Onc is having me stop Ibrance for a month and monitoring every week to see if a trend shows up. I am kind of nervous about that but what are you gonna do? If the numbers drop we may try lower dose. I thought I was on a positive roll. Always a wrench in the works....Sunday I had gone to the ER because of the shortness of breath and rapid heart rate. Seems like it did calm down during the week off. Anyway, thanks for the last post Ronnie Kay! Onward....
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Artist ,
I am happy your scans are good , i hope you soon find out what is causing the liver enzymes to flare up. It could be Ibrance . Taking a small break is not a bad idea while monitoring. If they drop after stopping Ibrance then you will have your answer. If not they will look for another reason. I hope it will all clear up soon so you can put your mind to rest. My prayers are with you.
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Thanks Woody, it would be nice to get through the Holidays without so much stress. Have you returned to your country yet?
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no Artist, i will leave on the 5th of December . I will have my pet after Xmas and new year lollll i don't want any surprises this season.let's make a deal we do not worry till after the first , what do you think? Both times my cancers showed on 11 of Dec. and every time on my birthday 6 of Jan i was in treatment lolll. This year i am ignoring thid and waiting till after the holidays . Lets enjoy our holidays
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Woody, I'll try my best!
I'll be thinking of you especially on Jan 6th! -
Woody, great idea to save scans until after the celebrations. Cancer stuff will just have to wait because you have important things to do, like enjoy the holidays! I do have a scan coming up before the end of the year, but fortunately my TMs are still good so I'm not too worried.
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Woody- My original diagnosis and my mets diagnosis were Dec 7th and 13th two years apart. It has made getting through the holiday season a little bit hard. My daughters birthday is January 2nd. I feel for you. May you enjoy your holidays and have a great scan in the new year.
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Artist i will be thinking of you too and praying that you continue to do well.
Shetland, you are on the right track and since we both have our scans around the same time let us both believe we are still going to be clear God's willing. We will celebrate and enjoy the season.
Leftfoot,
It has been a while , it is so odd that we get our dx around the same time and so cool that one of your daughters is born Jan 2 , i hope every december you get a new renwal on life and not a dx
and may God bless you and your daughters. Be well. -
Thank you Woody and the same to you! And to ALL of the ladies here as well, best wishes on everything going on, the good and the not so good. Have a blessed and wonderful Thanksgiving!
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Hello ladies,
Had my first PET scan since 07/08 dx and 3 months of Ibrance/letrazole treatment yesterday. I have an appointment with the onc tomorrow, praying for some good results!! My tm's have gone up 2 months in a row!! Thinking of all of you!!
Aliss
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Good luck on your scan results, Aliss! Ibrance didn't work for me, but Xeloda seems to be doing a good job. Not too difficult, either.
Shetland and Leftfoot- My 30 year-old daughter's birthday is Jan. 2nd, also! Quite a personality, that one!
I hope everyone is going to be with family on Thursday. If we have family we love, we are blessed and have much to be thankful for, even with this stupid disease. We lost someone very dear in our family this past summer, so our holiday will be bittersweet. But we still have a lot of love to go around.
Happy Thanksgiving, everyone.
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Aliss,
Good luck on your scans resutls, i hope your onc will have some good news for you.
Happy thanksgiving everyone ! May we all be surrounded with the love of our loved ones .
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Received my liver biopsy result---turned out I am Her2 negative. I started Taxotere last week with 6 Xeloda pills a day. 3/3. My WBC dropped so they had to stop the Xeloda, Monday and Tuesday and instead gave me a White blood cell boost. Today, I'll find out if I can continue with Xeloda again. I dislike Xeloda, ---diarrhea, nausea, mouth sores and just blah, but I know I need it. I have quite an extensive liver mets going on. My doctor is still trying to figure out the cocktail to put me in.
Happy thanksgiving to all! -
sandilee and woodylb, forgot to formally thank you for the initial replies. My husband is back home with me. We sent a red cross message and he flew in just in time for the first treatment last week.
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iliveformybabies, I missed your initial introduction as my notifications were wonky but I wanted to reach out to you and share my situation for its similarities. I find comfort in the knowing more and more people walking in similar shoes. I am 38 and was diagnosed on my family beach vacation in FL with extensive liver mets, just 7 months after treatment for stage 1a triple negative breast cancer. My girls are 12, 9, and 6 years old. I had two large tumors 6x10cm and 8x10cm, which at last look shrunk to 2x4 and 4x7 and will hopefully be even smaller when we take a looksy again next Thursday. I also have an uncountable number of smaller tumors in both lobes of my liver. So far I haven't met anyone with as much cancer in their liver as me. But, I'm doing great! I feel great, my treatment is working well (Gem and Carbo are my new besties), and I feel much more hope than I did at the onset of dx. I can see myself living out some beautiful , full years where before I could only see my death.
The doctor in the tiny hospital in FL made a very big point to me about seeking treatment in a large center. I really encourage you to explore all of your options as far as that goes. Suggestions to get treatment locally but see an oncologist further away sound good to me. You may also wish to look into Cancer Treatment Centers of America. They will fly you for treatments for free but you do need the right insurance. They'll check for you. My aunt was treated there and spoke very highly but it didn't work for me insurance-wise or for convenience. I am close to a great center locally so it was a better choice for me.
Best wishes and keep us updated. So glad your husband was able to be home for your first treatment. His words that you posted in a different topic really moved me. He knows well the truth. It is about today and the better I am able to embrace that truth, the better I live. You're in my prayers.
Missy
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iliveformybabies,
It is good you got your biopsy results this way at least yoyr doctors will know which way to go . I am glad and happy your husband was able to attend your treatments.
I am not sure xeloda and taxotere are good together they maybe too much. Since you responded to taxol the first time and may respond to docetaxel as well and then go on xeloda alone. Seek a second opinion if you are not comfortable with this one also like kaayborg said check out cancer centers.
I hope taxotere on its own will do a good job , it is a tough chemo and it is likely to lowe your WBC. On its own but you can always get a neulesta shot or neupogen after each dose to keep your WBC in check.
What you have in your mouth is from taxotere not xeloda . The worst of xeloda is hand and foot syndrom which is neuropathy , unfortunately taxotere also causes it. So you were getting a double effect.
I hope you onc finds soon the right combination in which yoy feel comfortable and is tough on cancer. You are in my prayers with wishes of good health and healing thoughts. Happy Thanksgiving.
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Hi kaayborg,
I also had a large liver tumor (11 cm) that shrank to about 4 cm pretty quickly, but then woudn't get any smaller. I ended up getting ablation on it and the interventional radiologist said that it was just scar tissue.She said it is very common with large breast cancer mets to the liver to leave scar tissue.
Just wanted to let you know that in case your latest scans don't show a lot more shrinkage.
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I also wanted to add that my inital liver mets diagnosis was a liver full of tumors. The liver speicialists basically said they couldn't help me because I had too much cancer. It was everywhere in my liver. Xeloda and Tykerb took care of that for me and I was NED for over 2 years. I had one solitary met come back but this time the liver speicalist said they coudl help me. I had a partial lobectomy and my last scans were NED in my liver again. So don''t give up hope. Even livers full of tumors can get to NED. I know I still have cancer cells in my liver, but they are controlled for now. I will take that.
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Me too. Diffuse involvement of both lobes, multiple mets (largest one 5x10 cm), not a candidate for local treatment. Chemo worked. A PET scan can help distinguish scarring from active mets.
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Absolutely love those positive stories. Thanks for sharing. Question for anyone. I've noticed people mentioning seeing liver specialists. This has not been mentioned to me. Is this just for surgery and/or ablation? If so, maybe that's the reason since I was told from the beginning that I'm not a candidate for either at this point. We'll try ablation if we can get it down to three or less tumors, I was told by my MO.
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Best of luck Aliis on those scans! Good message there Sandilee! Kaay I saw a liver specialist just to get a second pair of eyes on liver enzyme trends and to help collaborate on issues. I am glad I did. He answered some questions my Once seemed a little fuzzy about and just had a wonderful educated yet comforting demeanor. I was told I am not a candidate for ablation or resection because I have a few lymph nodes with mets.
Disappointed to eliminate another remedy...I will take what I can get too Leftfoot! Happy Thanksgiving all!
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hi all and happy thanksgiving holidays to all American sisters!
Finally have some good news to report after latest scan everything is shrinking and many tumours now necrotic. All LFTs plummeting downwards. Gem/carbo is doing its thing for me as it seems to for so many of us. I'm also tolerating it really well so long may it last!!
Onc told my husband to take me out somewhere and celebrate tonight. Having sat in chemo ward together for about four hours today not sure if either of us is up to it but definitely celebrating in my head. All the best to everyone,
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wowwwww wonderful news Isy , really wonderful . Happy dance for you so you continue to respond to carbo/ Gemzar hoping the rest of the treatment will abolsih all tumors. Go out , have fun , celebrate and forget about cancer for a while. In my prayers always.
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Very good news, Isy!
Iliveformybabies, I'm so glad your husband is home now.
Kaayborg, I think that yes, the liver specialist is for any local treatment to the liver, if you are a candidate. Though I was not when the extensive mets were discovered, my onc said that if anything pops back up there now, she will send me to the liver specialist. Sounds similar to what your onc said.
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Woody, thanks for your lovely and positive reply, as always.
Shetland, just LOVE Shetland ponies. Used to ride a little black one called Tinker. And a right tinker he was too!
Hope everyone has a good weekend
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Yea, Isy! Sharing the gem/carbo love with you. Long may it last for sure!
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Wow kaayborg, you're the Gem/carbo poster girl. Hope I get to follow you on that particular journey! did you have any issues with blood counts whilst on it? My neutrophils have been borderline last two treatments but the protocol here is just to delay for a few days and so far so good.. X
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Isy
So happy for you !!!!! Dance that happy dance!
Bab
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Isy, I missed the day 8 treatment of my 3rd cycle b/c of low wbc. I have done Neulasta after day 8 on each cycle since. There were plans for Neupogen after day 1s but Neulasta alone has been enough so far. I am usually worried about my platelets b/c they have gone close to the border on day 1 lately and historically have decreased between days 1 and 8 but suddenly, the new thing has been to go up between days 1 and 8. Not sure why, but "Yea, Platelets!" I like to cheer them on, for what it's worth. While I was busy with my platelet pep-talk, my rbc counts decided to take the plunge this last time. I was at the transfusion level but didn't have to have one b/c I didn't have any symptoms. It's hard to say what will happen each time. But, I feel well and so far my tumors stay stupid in finding a way around gem/carbo's punches...thus the love I feel for the toxic combo. Hip, hip!!
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kaayborg,
I was on carbo+gemzar for six months, platelets were a bit of a problem but usually it got resolved very quickly after delaying treatment for one week. I was on neupogen on the second day after each session. So WBC were always ok , however i was not so lucky with RBC they plunged big time and caused me fatigue and shortness of breath and sleeplessness. I had one transfusion since the plunge is not an ordinary anemia, it is not caused for lack of food it is the side effect of carbo. My onc advised immediate transfusion. I am very happy for Isy and you that his combo is working on your cancer and your tolerance for it is good. I was not so lucky , it barely shrank my tumors and it did a big number on my blood so much that the last two doses were reduced and skipped one.
I will continue parying it will keep working for the both of you with the minimum damage. Hourrayyyy for both of you ! I hope it keeps working for a long while and abolishes your tumors.
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Great news Isy! Long may gem/carbo last!
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lovely to be recipient of a happy dance at last so thank you! Interesting to see how we all react so differently to the treatments. When I had my first chemo, Abraxane, was encouraged to read how successful it was for so many ladies on here. Onc told me it was the "gold standard" as well as telling me how expensive it was. He was certain it was going to work and so was I. Well. Not only did I really struggle with it, neuropathy from the word go, baldness, constant fuzzy head, weight loss, it actually grew my tumours. Onc now telling me that particular scan was 'horrendous'. Feeling so much more like myself now, putting on weight, hair growing back and fingers/toe returning to life. Here's hoping our bloods hold out for a good long time kaayborg!!
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lolll Isy , i hope you will always be the recepient of many many happy dances!
It is true each cancer or subcancer reacts differently on different meds and it is never th same on each and every indivudual. But thank God it is so all we would all in a miserable condition . These combos are most golden for cancer but halas they react differently on each and everyone of us, this keeps pharmaceutical searching for different cures. Thank God each one of us found her own golden combo. So i will be doing a lot of happy dances for each everyone on this board.
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So true Woody. We are now trying to figure out my reaction to the Femara/Ibrance combo as my liver enzymes are still rising. She took me off of both for a few weeks to see what happens there. I hope I am not done with this TX already...If so it's on to Falsodex.
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hi liver metsters
Woody is right. You never know how treatment will affect response. I guess that is why those scans are so important.
Reduced dose of gemzar (appears to be working) as TM now 803. Was 1358 in early October. SE are very bad. Incapacitating really. Fever 102 Thanksgiving and fever for 5 days. I get two fever free days a week. Body rash. All from inflammation. Body trashed. Walking when I can. On a bad day I can't go. Boo.
Still believe gemzar working so one more cycle of 3 weeks on 1 week off. December will be another tough month physically. Can't scan until January. We go from there. Reduce dose has helped somewhat. But SE rule right now. Not in a good way.
All I can say is hang in. Even when you don't want to (Had a few " mommy, I don't want to do this anymore.)Lol. I keep track of you all. Good news celebrate. Hard news remember there are options.
Best to all
Diana
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Diana, It makes my heart hurt when I hear of someone like you having such a hard time with SE's. It sucks when we can't do the things we need to do or enjoy doing. I hope the week off will see your SE's lighten up a LOT! I hope you can get out and walk during December even if it is in the mall to look at the decorations and soak up some Holiday spirit. Thank you for reminding us to hang in, I will try harder to not sweat the small stuff..
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I was diagnosed with Stage 4 mets to liver in 2011. Had recurrence Jan of 2013. Been on Kadcyla since March 2013 and cleared up my lesions. Unfortunately I have mets to brain now so working on that at the moment.... Kadcyla saved me when the Herceptin stopped working. Take care and keep us posted!
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Diana, so sorry to hear what you're going through at the moment with SEs but worth hanging in there as it seems to be working. Maybe reduced dose will lessen SEs over time whilst your body adjusts to reduced chemo load. You know how fast Christmas always comes and goes. Hang on in there and it will be January before you know it
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Diana ,
I am so sorry honey for yoru SE's Gemzat sucks this way. However lower doses may improve you endurance. Hang in there just a little bit longer, January is not that far and we go from there. Just know we are with you all the way. Maybe after the scans you will be given a better and more comfortable option in whch you do not have to suffer such horrible side effets. Personally i hated Gemzar as well as carbo. They killed me. I do not know what your doctor told you when you started this tx, but mine told me it will be tough and he also told the maximum amounts of rounds is 8 not more. I barely made it to six , towards the end he wanted it finished before i did lolll. So i feel for you believe me. At least it did bring your tms down so yayyy.
Love , prayers and healing thoughts.
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Artist,
Do not try to guess what is next sweety, take it one step at a time. Wait now to see your body's reaction upon resting a bit from ibrance/femara and if you can continue than great if not faslodex is a good option from what i read here fo some it was a lifesaver. I hope you feel better, and ke keep our spirits up and wait and see.
The holidays are around the corner hopefully we will be able to enjoy them with our loved ones.
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Priscilla,
I am sorry for your brain mets, i hope it is taken care off quickly do you can go back to beofre it. Kadcyla is doing some good for some while nothing for others , it is a super herceptin so it may work on you again. Check Denny123 on the Kadcyla thread she is a 13 years or more stage 4 survivor. Kadcyla got her to NED for 9months . Now she is on it again . I hope you soon get to find out hat tx they will give you and i hope it is the right one for you.
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Hey ladies, I just wanted to check in with everyone. I had a PET scan the week of thanksgiving and results the day before. I am on Ibrance 125/Femara and this scan was done at the end of 3 months. I was really worried because my tm's just kept rising. But scans are in and the results are good!! I started with 10+ liver mets and now only have 3! They noted the mass in my breast to be "significantly" improved and the lymph nodes in that side are no longer lighting up!! It was so nice to finally get some good news for the first time since dx 4 months ago. So back onto Ibrance for another 3 cycles(I hope). They wrote us a referral to a hospital in WA for a liver consult?? Anyway, I wanted to share my news and let you know I think/pray for you all daily!
Alissa
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Hi Missy, thank you for such a sweet reply. I am still battling with my inner demons. Every day, I wake up and it is a battle to be happy. Thank you for your input on seeking treatment from a large center. I am currently receiving treatment in a small one. The big one is 3 and 1/2 hrs away and then of course 3 1/2 hours driving back. So far, just one cycle of Xeloda and Taxotere. I have 5 more to go. It was rough the first week, but it got better. I am handling Xeloda good--for now. My oncologist wants to lower the dose to 5 a day instead of 6 a day next cycle. I am not sure how long the Army will let my husband be with me to help me through the treatment. He eventually has to get back to work, but we will see. A day at a time. overused, but I still can't help but worry. What are your struggles? I am glad you took time to write to me. It gets quite lonely being in our position especially every time I open Facebook. I see people and their peachy lives. =( I know I am a debbie downer today. haha sorry. I saw a story about a liver met girl who's still alive after 10 years...She's treated at MD Anderson though, but there's still hope. I can live with being treated at a small facility as long as it is convenient to people who are taking care of me and it will not take my time away from my kids. I will just leave everything to God, and I will just talk to you and the girls on here and get idea to suggest to my oncologist. It's like having a team of specialist. wink wink
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Shetland, Thank you!
I forgot to thank you for the link you sent. -
Dear liveformybabies,
It really hurts to hear young women like yourself battling this disease. Of course you're Debbie Downer sometimes. Come here to vent so you can be present for your kids. Whatever you can do to put the focus on spending time with them- having fun, being silly, all the things you probably haven't done in awhile- are important to keep things as normal as possible. Once you have been with Stage IV for awhile, things will likely settle down and you will actually begin to feel like life will go on. It's hard, I know. Hang in there. It gets easier.
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Hello Ilivefor . .
I don't think you are being a downer at all, I think everyone has highs and lows! My first 3 months after dx were horrible! My tm's kept going up and my anxiety did too. I am now 4 months in, I still have anxiety, especially when it comes to my 4 very young kiddos, but it has gotten a little more manageable. I don't think it will ever go away completly, and it is really really hard to see everyone on facebook or in real life, and it seems they have life so much easier. I totally understand, you are not alone. I think these types of places are so important, so you don't feel alone. I find in real life, no one understand a whole lot about stafe 4, so they just keep saying, I think by this time next year, this will all be behind you. I have learned to smile, they just don;t understand our world. Hugs to you!!!
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Woodylb,
As always, your replies are wonderful. Thank you. It shows how much you care for people who are just starting their journey. Yes, I kinda realize that Xeloda by itself, I am toleration well because after the WBC shots, they put me back on Xeloda, and I was fine. Just tired, but none of the nonsense I encountered on the first week of taxotere with Xeloda. the doctor is keeping me on the same regimen but lower dose of Xeloda, 5 pills vs 6. Thanks for your insight again. Wishing you well Woodylb as you continue to provide support to most of us in this forum. xoxo
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My mets have just progressed to my liver so I plan to join you all here in liverland. I also have lymph nodes, skin and chest wall mets.
I have been on gem/carbo since the beginning of October, but I have had progression so now I'm working with my MO on what is next. I'm hoping to get Lynparza/Olaparib off trial but if that doesn't pan out or if it takes too long then we'll probably go with another chemo.
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Hi, Viceroy...Liverland, this is very funny to me. I feel very much like I'm in Liverland. I'm not sure I ever gave my liver a single thought up until 4 months ago. Now it's central stage, starting with when I called it my liver baby, as I'm sure I was about 6 months pregnant. Anyhoo...
Yup, it's easier to deal with stage IV now than it was 4 months ago but I can't imagine this looming darkness will ever fade entirely either. It just feels so weird...surely I'm gonna wake up soon because how could this really be? So many things I do, I do with a silent sad question in my head. "Will this be the last Christmas?" Oh, I wish I could make that voice SHUT UP!!!!
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I do the exact same thing kaayborg, the silent questions. So far I have not found a way to turn it off. How can we help it? I also have the weird surreal feeling that this is all a dirty joke....Woody, I am not guessing just repeating what my Onc said would be next IF I can't continue on mu current stuff. My liver Dr. today said it may be an auto immune disorder rearing its head due to the meds which he said is easily treatable. So I may be able to continue on Femara/ibrance when and if they figure it out?? I am trying to figure out how to keep the spirits up a little more consistently, but any kink in the process sends me reeling. You are right though, time to enjoy the Holidays! As my DH says "Whatever happens is going to happen whether you are freaking out or not, might as well be calm and wait and see." Good news Mama! Whoop Whoop! Welcome to Liverland Viceroy, Sorry you have to be here but it is soooo supportive and soothing to talk to the other women. ILive, Sandilee is right, you do get used to all this to a certain degree and it does get easier.
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Kaayborg - When I was first diagnosed I thought I was going to die right away. I also went out on disability. Now I'm pretty sure that it will be awhile before I die and my new normal includes lots of pain meds and random trips to the ER. With all of this I've decided that it's time to go back to work. I like my work and I really like my coworkers so it's something that doesn't cause me stress and I'm looking forward to it but 2 months ago I thought I had to be pain free and basically healthy to carry on with my normal life and now I know better.
Artistatheart - I like the advice to just relax and see what happens. It's not something that I'm very good at, but I'm working on it.
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Viceroy, I find that being at work with my wonderful coworkers and all of the kids helps me tremendously! Really keeps my mind off of things for almost the entire 8 hours......I plan to keep working as long as possible.
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Artista and Viceroy
I too find work the best way to escape the thoughts and fears that I sometimes have. I also tend to plan going out much more than before my dx. I want to enjoy my time on earth
Bab
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yes babs, i just bought some great seats to a big production of the Nutcracker to try and get the Christmas mood rolling!
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Ferber and the holidays have been very hard for me. Dec 13 marks 5 years since my initial diagnosis and the 7th marks my 3 year stage 4 diagnosis. This is the first December in the past 5 years where I am not angry or resentful. It's stil hard but I am happy to say that I am enjoying the season this year. So there is hope.
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iliveformybabies,
Wonderful, i am happy your dose is reduced and you are more comfortable with it. It will get better eventually , specially when you scan after the treatment and the scans are good . You soon forget and start breathing again. I hope this tx will be the one and at the end you get the awaited results and you calebrate. I wish you SEs free days so you can enjoy the cmoing season and i will pray for your next results. Hugs .
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Leftfoot,
Always happy to hear from you, and happier you are feeling better. Resentfulness and anger may consume a person though it is a normal reaction to disease and fear. Congrats on your 5 years anniversary and i wish loads of them . I am grateful we are all still around to enjoy the simple things in life. May you be merry and happy this holiday and always.
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Leftfoot, I totally get your feelings and sometimes wonder if i have lost most of my true joy over things such as Christmas. However I do agree with Woody that these feeling can consume us and I am working hard to try and find some joy again while I am here. We have no idea how many years we may go on so we might as well live as well as we can.
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Mamaplus2twims,
Comgrats on your good results ! Wishing you a clear second scan in the coming months.
)Kaayborg and Artists,
My initial reaction on my second dx with liver mets was horrible because it came around Xmas. My husband and I had a tearful one thinking this would be my last. But as i started my tx and even though they were not famous the little voice in my head stopped all my energy was focused on the now and the thought that i may actually survive this , ( well at least for a while) . I thought for now i am alive and i do not want to think about later because it will hinder the one i have now. It is not easy to shut that little voice but once it is done , you feel the difference and it pushes you further. I hope you both get to this place and enjoy your lives for a long time.
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Thanks Woody, I am definitely getting better at telling that little voice to shut the hell up! LOL! Because I have come to realize i can make myself crazy over the worry and fear and that just ruins the now. Easier said than done but it makes such a difference. My new liver doctor has helped in this regard quite a lot as he is very 'no nonsense' but at the same time very upbeat and encouraging. I love him.
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This is all so true. I know it! And I love when you can pinpoint something so absolutely certainly. I, however, am still stuck in the glum for reasons unknown. The literal sunshine is supposed to come out today and tomorrow and we've got fun family weekend plans so things should be looking up. Maybe I'll get great scan results, too. I expect so as there's no indication of any issues but as we know, one never knows.
I do wish everyone a wonderful Friday and on to a great weekend, too!
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Artist
I am so happy you like your liver doc , it really helps to actually liking the one who would be treating you.
) have a nice weekend. -
Kaayborg,
I hope you get great scan results so that little voice shuts up for a little while my prayers are with you.
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I recently joined the Ibrance discussion group but want to report to the liver group that I had a 14 year run on just femara. I went NED after 6 months. It was only one met but it has now resurfaced near the same spot in my liver. When I was first diagnosed I found it hopeful to hear stories from people around for a long time with mets to the liver, so I share my story. I now am on faslosex and Ibrance, doing well so far. Nina 🎶
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Wow NinaCA, 14 years on Femara / Tetrazole! How fantastic! I want that! I hope that your single met can be zapped with treatment and that you get another long run on Femara. Boo.
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Sandilee and Mama2twins! Hi thank you for your encouraging words! 2 more days and it will be the monthsary of my diagnosis. I can totally feel that my spirits are getting better---BUT then again it may just be because I am on a 1 week chemo holiday! hahaha I know I was just in a slump a few days back. I am in such good spirits, I feel like a completely different person. I attended a Christian praise group and that really really lifted my spirits up. I am not one of those very religious person. I don't go to church, I don't read the bible. Yesterday, I went just because I don't want to be alone at home while my husband goes to the gym. That may just be one of the best decisions I've made. The power of praise, and knowing that I have nothing to lose if I put my faith in Him. I am not here to preach, so I am not going to start spouting bible verses or lyrics to a Christian song. It worked for me. Yesterday, my husband shaved my head. My hair started looking like Gollums', so we took immediate action and shaved it. I felt so loved. It is not always that you have a husband who is willing to shave your head 2x or willing to fight a cancer battle with you 2x. I am just absolutely thankful for whatever blessings I have right now--even with this horrible terrible disease. Being happy, having a warrior's heart is an ACT of WILL. You have to will it. Lift your spirits, make it whole, and the body will follow suit. I am already making plans of using mind over matter/mind control, when I go through chemo again Tuesday next week. Here is LOVE and POSITIVITY to all my Warrior Buddies.
Happy Weekend! -
NinaCA,
you are so lucky! I will find my wonder drug---someday and I will live 14 years and more from it too! Femara did not do me that good. 2 years and then I developed mets to liver.
But still positive that there is something out there for me. congrats again and I hope you continue to fight this disease and be on the winning side. xoxo -
Woodylb, thank you. I am happy to report that the glum ended yesterday. Can't really pinpoint why but it may be because I had opportunity to help one of my students in a heartbreaking situation. I should really keep record of these things I determine that help my spirits (to reread in times of need) because I had reached a point earlier when I realized I was miserable because I had spent far too long thinking of only my own sad story. Even though the care I receive is so comforting and has been so instructive for me on how to care for others, I think it's most healing to continue giving care to others through this illness. The world is full of opportunity.
Second, to liveformybabies, I am just so thrilled that you are feeling so well emotionally!!!! And you have reminded me of more I should add to a journal of helpful reminders. It is a willful choice that your mind will eventually catch up to in genuine. I had once determined to just lie to myself. Let's just pretend this situation is a gift (not actually true b/c if it were I would surely return it), but just pretend that it is and concentrate on all the good that has come from receiving it because that latter part is real and not actually a lie at all.
I am sure the glum will return but we can fight it off like we fight everything else.
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kaayborg,
This is wonderful , i new it won't be long before you realize it. Being able to give and help others in our situation and very rewarding. It is a road which could lead you to tranquility and acceptance of who you are leading to stronger immune system and healthy place. I applaud you and think you are wonderful.
I am sure like all of us there will be time for another glum, for one reason or another but it won't like before and you will be able to shake it off quickly. So bravo !
Ilovemy2babies,
It is great that you feel the support and love of your husband at such time , it is a life saver. It is also very empowering over the disease. I did the same on my first dx and it included my son plus my hubby and all my friends. It felt so good and it really gave the strength i needed to keep going. I am so happy you are in this place.
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Will be lurking in this corner for awhile. My oncologist changed me to IV Kadcycla and it was a disaster. I got news on Friday, that 90 days on it and the mets exploded in the liver. I have been referred to MD Anderson if there is a clinical trial I can join. I had two wonderful years after diagnosis with Armidex, then Ibrance and the mistake of putting me on Kadcycla. I have great hope but am very realistic. In addition, I do have a strong support group. Still as you all know these progressions just knock the wind of you. Carolyn from Music City
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Carolyn
Praying for you!
Babs
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Carolyn,
I will be praying for you , i hope you are able to join a trial and get better.
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Carolyn, I'm so sorry for the terrible news. I'm sending you a giant cyberhug. Are there other Tx you haven't tried yet besides going straight to a trial? Try not to despair yet. It looks like you are early in the game here and they will figure something out. Thinking of you...
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Carolyn
Thinking of you and sending some hope and comfort. I believe there will be options for you which will work. I progressed horribly on Lxempra and now gemzar appears to be working.
The news is horrible and shocking. But always remember new treatment ....new hope
Keep us posted only best wishes
Diana
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Carolyn - Praying for your next great, long lasting treatment. It seems that the liver likes to explode with mets. Such was the case for me, too, anyway. Nevertheless, the explosion can be controlled.
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funny that - mine exploded too - on Abraxane. Onc likened it to someone throwing a pile of gravel in there and it just splattered everywhere. Seems like current treatment is clearing up the rubble. Yours will too
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Hello, Everyone. I've just been catching up with reading this thread after taking a computer break. I was working on some projects that turned out great, so I'm happy. In the way several posters have mentioned, I have been able to enjoy today and not dwell on fears about the future. Learning to be busy enough to ignore bc, but not so busy I get exhausted. I don't think I can catch up with replying, but I am thinking of you all.
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A computer break is a very good thing. I am glad you took it. It would be nice if we could all sit in the same room for a couple of hours every now and then. Still, very grateful for these boards. Imagine how much more disconnected and alone patients must have felt even just a decade ago.
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Kaayborg,
You are right , we are so blessed to have these boards, to be able to share all the ups and downs and connect with people we never met but to be able to share all the emotions , is wonderful.
It is a lifesavor.
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Thanks Ladies,
I so appreciate the response. I so appreciate knowing that there are others whose liver "exploded" with mets. It makes me think there is still some hope out there for me to have extended time with this nasty disease. Prayers for all of us. We deserve some good breaks now!
Carolyn from Nashville
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car2tenn- I am also one that had liver explosion. Within 6 mo of having normal liver enzymes, my numbers went to 1600, 300.300's. Down some now, but holding high. I'm not throwing in the towel yet! Wishing you the best. Moni
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I'd like to share good news. This week's PET-CT scan shows that I continue with no FDG uptake in my liver or elsewhere. That means my scans have shown NEAD for a little over a year now. I didn't think I was having scanxiety, but I felt so light and happy after I heard the results. Wishing more good news coming up for everyone here.
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wonderful news Shetland ! Specially right befor the holidays. Happy dance for you and may you continue to show NEAD for a very long time .
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Shetland that's wonderful news!!!!! So happy for you!!!!! I hope you remain NEAD for a VERY LONG time!!!Babs -
Shetland, I am so very happy for you!
Curious question: what is FDG? And, I'm guessing NEAD is no evid. of advanced?? disease. These are new to me but obviously good ones! Yea!!!!!!
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Happy Dance for Shetland!
So... I'm another one whose liver exploded with tumors this fall. What was it, the Season of Exploding Livers? Doxil did NOTHING for me. Onc started me on something called metronomic therapy - a low-dose chemo cocktail given once a week. According to my symptoms it seemed to work for all of 2 weeks (I keep telling myself "better than nothing"). Then bad news turned out to be helpful - I woke up one morning in excruciating pain - I couldn't even straighten up. Onc said straight to ER. CT showed slight progression so I've been switched to Gemzar. The helpful part of that was that I probably wouldn't have had scans for at least another 4-6 weeks so the switch was earller that it would have been. The other helpful thing is that as part of the ER workup a urine culture was done which discovered a UTI BEFORE I had symptoms. As for the cause of the pain - we still don't really know, though onc thinks I might have had a small bleed from one of the liver tumors. I know I'm not still bleeding if that was it (hemoglobin is going up, not down) and I'm on Targin for the pain. <Sigh> so I earned myself a one-week vacation in the hospital.
..... and you know you're in an Israeli hospital when all meals are served with metal forks and spoons but plastic knives.
Leah
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Shetland great news - I'm thinking NEAD is no sign of active disease and I right? many of my "exploded" mets are now necrotic so guess they're inactive too. I hope that light and happy feeling remains with you at least to get through the frantic festive season!
Leah, sorry to hear what you're going through but great that your docs are on the case so quickly and hope the gemzar is good for you.
Woke this morning to find a dead bird and houseful of feathers it's taken me and no. 2 son a good hour to clear up. Our two beautiful and docile lap cats it seems have turned feral overnight
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Dear Leah S.,
I loved your post and am so happy for you that you are improving. I had to laugh at the plastic knife but metal spoon and fork remark. I have been to Israel- 5 years ago.. I had packed some salt covered rock from the Dead Sea in my suitcase. As I went through security exiting the country, I heard a female military agent speaking to me about the wand (sorta geiger counter) said I had a high salt content in my suitcase. As they went through my suitcase I showed them my rocks. They were definitely amused when I asked if I could keep them (I could).. Anyway, I loved my time in your country and you are right...the security is top notch. Hope we both have massive healing of our livers! Carolyn from Nashville, Tn
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Yeah, great news Shetland! Happy Christmas dance for you! Wish I could still do the the Letrozole/Ibrance combo as it was working for me on the tumors but not the enzymes I guess. Find out Wed what is next. That stinks Leah, a whole week in the hospital. At least they have controlled whatever was going on.....Hope you have a lot to keep you busy!
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Thank you for the happy dances etc., Woody, Babs, Kaayborg, Leah, Isy, and Artist. It's especially nice to be able to share with you guys here on BCO because only three people "in real life" know my stage iv status, and because I know my fellow stage iv people really understand. Yes, by NEAD I meant No Evidence of Active Disease. I coined that one myself because the CT still shows evidence in the shapes of tumors, but the PET shows no metabolic activity. They are dead tumors. I don't know if they will eventually get all cleaned up. They were big and numerous. (Unsuspected explosion last year, right?) FDG stands for fludeoxyglucose or fluorodeoxyglucose, which is the radioactive tracer that the PET scan sees because active tumors like glucose. I suppose that for me it would be hard to know what is going on with a plain CT.
Leah, I hope you are out of the hospital soon, and that gemzar will be good to you. Artist, I know this waiting has been hard, and it will be a relief to have a new plan come Wednesday. Isy, sorry for your National Geographic moment (feline hunters and prey).
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Shetland. Many times I wish I had kept this Dx more to myself. Life would seem more normal for sure. People would be acting normal, I wouldn't have so many weird inquiries or people talking about how they are having their whole congregation pray for me in the middle of my office. LOL! The waiting is bringing me down and I imagine I can feel a few more twinges. Today I had blood work and asked for them to check the tumor markers so I have another baseline before starting a new med. Wow, that would be soooooo fantastic to have those buggers in your liver just dissolve one by one! Rooting for you! Really anything is possible with this crud!
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It seems like I'm starting to have some pain on my right side, kind of where I expect my liver to be. I'm surprised because my last scan (October) showed my mets were small. Do any of you have intermittent pain in your liver, due to mets? I'm now concerned that Xeloda may not be working. I don't see my doc for two weeks- and I really don't want to deal with this until after the holidays, (another CT due end of January) so I'm just going to wait and see, but I was wondering what "liver pain" feels like to others.
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I have been having that pain you just described and was actually in the ER last weekend for it. Turned out it's time to evict my gallbladder, full of stones! But it sits right next to liver, so they could see why I was so upset!! Hugs to you!!
Alissa
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I had liver pain right in between my breast and seems at edges of liver. I'm on taxol and liver pain has subsided. will do PET tommorrow for followup.
Terri
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sandilee, My twinges in my right side ribs feel like little burning pokes and just a "fullness" there and now my right shoulder is having some sharp pains in the top of the joint, also a sign of liver mets I hear. Hope to start a new med plan tomorrow!!! I'm stressed....ibc, Hoping for the best with your PET! Yah Mama! What a relief huh, even though you had to go through surgery anyway...
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I only had liver pain at diagnosis. Once treatment started it went away entirely and even though I still have at least two tumors the size of large lemons and innumerable smaller ones, I don't feel a thing. Before, I felt uncomfortable fullness like being 9.5 months pregnant and then just days before the pain stopped entirely, I had very sharp, stabbing pains at top of rib cage just beneath my right breast.
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Sandilee, my liver pain before treatment was of two kinds. One was a "tummyache" just below my sternum. The other was occasional attacks of a sharp ache under my right ribs wrapping around to my back, that was worse with movement. Later I felt twinges under my ribs as the taxol was working. I still have twinges sometimes if I have gas (sorry tmi); maybe that is because of the liver having been injured/scarred.
Regarding telling people, I can see pros and cons to any choice. I decided to limit disclosure to protect my kid and enjoy our time together more. There is nothing to tell unless/until I start going downhill. I miss out on being able to get support, but I gain in having people around me act normal.
Why do I like that term "liver buggers" so much? I wonder if Ibrance affects the ability of my macrophages (debris-eating white blood cells) to do their job and get rid of the dead tumors. It doesn't really matter; just one of the strange thoughts a cancer patient has.
Ibcmets, hoping to hear good results from your scan!
Mama2, only in bc-land are gallstones good news, right?
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Sandilee, before diagnosis I was very bloated below breasts, bra often had to be undone or loosened, definitely that 9 month pregnant feeling. I also had stabbing sensations, though not that painful, in liver area and round my back on right side under the ribs. Also had some pain in right shoulder. As soon as treatment started the bloating went away but still now get twinges - I've had these both when tumours were growing and when they were shrinking so really don't know where I am half the time.
I'm also not one of those that will sing from the rooftops that I have cancer, I like to keep a part of my life and a whole set of people unaware of my situation which is restricted to family and friends who were around first time round. I don't want to be defined by my illness or always known as "that poor woman who has cancer". I'm happy for people not to make allowances for me or treat me any differently - my close friends and family know not to overdo the sympathy. When I go to the cancer centre at the hospital I often think "what am I doing here, surely I don't belong here?". I guess it helps that I still feel really well.
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I just want to thank all of you wonderful people for all the caring and helpful information on this thread. Last week my oncologist told me that my liver enzymes had gone way up in my last blood test. I have lots of bone mets, but never anywhere else - until now.
I spent almost a week reading through this entire thread, and by the time I had caught up last night, was pretty much prepared for what was about to come. Tamoxifen failed pretty quickly, and Arimidex is failing too, so I wasn't too surprised when i thought it was attacking my liver already.
BUT - I had an ultrasound this morning, and the technician said he couldn't find anything sinister at all!! I still have to wait for the official report, but it looks like the bloods may have been affected by the recent radiation on my hip mets.
No offense, but I'm glad I'm not joining you ladies quite yet. Although I am so glad I have you to rely on when my time comes to join you all. Thank you all for making a terrifying possibility into a not-quite-so-scary time, thankfully with a good outcome (for now)
Sue from New Zealand
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Shetlandpon,
Did not remember posting on the liver met thread here about my scans. They were good. I'm on taxol & Xgeva only. The taxol is working great at reducing the liver mets by 2cm and got rid of the active lymphn node & bone mets stable. It is giving me a lot of nueropathy climbing up to my knees so my onc cut the dosage in half today. Will be off on vacation for 2 weeks to Chicago to see family, can't wait.
Happy holidays everyone.
Terri
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Suems- I don't blame you one bit for not wanting to join us just yet. Who would!? So glad your scans look good. Sometimes it's just the medications that play havoc with our blood levels. Meds are often not kind to liver enzymes because they are processed through the liver.
I hope everyone is enjoying the season with people they love.
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Sandilee, I also have intermittent liver pain. Sometimes it feels like tightness in the area (like the rest of my abdomen is pushing on it). Sometimes I have little pains in the front, side and/or back area where the liver is located. Sometimes, they are clearly liver pains and other times I can't tell whether they are liver pains or rib pains on the inside of my ribs in those areas from bone mets. Regardless, mine have been tied to shrinking tumors.
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JFL- thank you for your response. Shrinking tumors? I like the sound of that. Fingers crossed
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hello all. I had pain to my side thought it was stoNes or gallbladder. The pain I feel is due to my 8th rib which almost had a hole init from the C. I also believe I cracked it.
Had liver enzymes check 2 weeks ago, went from what I think was the 400s to around 68. No tms yet and my first scan is in January. I kept reading you want feel pain with liver mets, I read most ppl find them due to something Else. I went to hospital due to pain but thought it was gallstones. Wish it was. Hugs to all.
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Terri ,wonderful news happy you got them for the holidyas and i hope they last a lifetime. I am glad taxol is working for you it did a good job on me too.
All of you ladies i hope you get nothing but good news , l wish you all a very Merry Christmas and to those who do not cele brate Christmas Happy holidays hoping it will bring us all healing lights , hope and joy.
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Same to you Woody! Have a beautiful season and enjoy your family!
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re. pain with liver mets –
For the first year when I had a dozen mets inside my liver, I didn't have extreme ongoing or specific pain and my liver didn't swell much. During the past year, I've had more trouble with pain, swelling, fullness, nausea, reflux and ascites. I was told the cancer now coats the outside of my liver and is in peritoneum - both give me ascites, which leads to similar symptoms.
The doctors attribute the pain to both swelling liver and tumors on the outside - anything that causes the liver capsule to stretch or twinge can be painful - whether the culprit is on the inside or the outside.
I'm currently taking tramadol and various natural remedies for the pain. For the nausea zofran, reglan and more natural remedies are holding the line.
Hospice seems remarkably well informed, ready, willing and able to help with my variety of symptoms, not only pain.
btw, I read one case report of a woman with breast cancer whose tumor-filled liver reached within an inch of her pubic bone. Whenever I feel too sorry for my ascites-squished guts, I think of how it would be without an indwelling drain and a chance to relieve the pressure.
Singing praises of modern medicine and how that drain has freed up my life.
good wishes to all my liver sisters, Stephanie
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Hey gals, dropping in for an update, things are rough for me right now.
My liver mets are huge and I'm in pain around the clock. I'm taking oxycontin, plus oxycodone for breakthrough pain . My energy level is low and I can't do anything physical. Even something as easy as unloading the dishwasher is hard. Adriamycin, my most recent chemo, didn't work, the mets are all bigger, my scan says increase of more than 25% compared to the scan 3 months ago. We are re-trying Abraxane now, crossing fingers I'll get a little mileage out of it, but it is a long shot. Amazingly, my liver function is still within normal limits, so I'm still able to get chemo. My onc is amazed I have enough liver left to have normal labs.
Anyway, I'm a little overwhelmed with sadness right now. I'm thankful I have had six good years, but now that things are so serious I feel the weight of everything. I think the holidays make it especially hard. Thanks for letting me vent/share a little.
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hugs Nancyh.
I will put into the world that you get relief soon. Visualizing treatment shrinking those suckers.
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Hugs to you Nancy!! Keeping you in my prayers!
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Oh Nancy, I wish I could take some of that sadness from you! It hurts my heart to know you are hurting. Please know that you are in my prayers today and we are all thinking of you. The Holidays do make it especially hard that is for sure. I am keeping good thoughts that the meds will kick in again and give you some relief.
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Nancyh,
It is normal to be depressed during this season when you are in pain. It breaks my heart to see you in so much pain and sadness. Please believe we are all here for you evenif only virtually . I hope abraxane will give you some relief. You are in my prayers and on my thoughts. Vent aay as much as you want we are here for this. God be with you. Gentle hugs .
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Nancy, so sorry to hear what you are going through at the moment but the liver truly is an amazing thing and the fact that your liver function is still good is surely a sign that there's hope yet. It is so hard at this time of year. I used to LOVE Christmas but frankly I can't wait for it to be over. Everyone is out enjoying themselves and I have that little voice at the back (and front) of my mind saying "is this the last one?". Trying to stay upbeat and thinking of all you lovely ladies that there's plenty of Christmases in us All yet!
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Nancy
I'm hoping the Abraxane gives you your much needed relief. We're all here to support you and are sending you virtual hugs!!!!
Babs
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NancyH, I am sorry you have to go through these especially on this time of the year. You have every reason to be sad so--Give in. Shed Tears. Be depressed. Embrace fear. Worry about dying. Think about the loved ones you'll be leaving behind. Cry over the life you should have had. Lose hope. Go through all the negative emotions you can possibly think of, but when you're done, please remind yourself that you are strong. Had you not been strong, you would not have lasted 6 years! I read your bio and you have been through a lot--a lot of setbacks. You are strong not because you don't shed tears or go through a slump. You are strong because you let yourself embrace sadness, hopelessness and all these negativity--for a moment, but you manage to pull yourself up and fight again. With our situation what's the alternative? Just as staying positive and fighting to be happy can be tiring, I find it as tiring to be hopeless and depressed. It's always a roller coaster ride with my emotions. I personally will choose to hope and be somewhat happy everyday. If my hope gets crushed one day because I "lost the battle" oh well. I'd say I still won. I would choose that over living in fear and sadness everyday and die that way. I know it's easier said than done. You've had your 6 years. I've only been a stage 4 not even 2 months. I'm a rookie compared to you. Please know that women like you are my source of inspiration so please hang in there. I would love to have 6 years or more too...Love and prayers, Kim
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Nancy, it is overwhelming at times to be filled with sadness and despair. I'm sure you've been through it many times before. It is really painful and I am sorry you are at that stage. But, I agree with iliveformybabies. It is o.k. to give in to your sadness, fear, and grief for a while. I think we would all go nuts if we didn't. Then, pick yourself up and face the new challenge with all the strength you can muster. I hope that comes soon for you.
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Nancy,
I am so sorry to hear of your struggles. I hope that the Abraxane works well for you, as it did for me. I have followed your posts, and greatly admire your strength and positivity. Allow yourself to feel everything you are feeling at this time.The sadness and fear are understandable. Please continue to vent, as we are here for you.
Have a blessed Christmas.
(((((Hugs))))))
Melanie
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I know I haven't been posting much lately, but I've been reading your posts and sending prayers for healing for all of us.The words of comfort and encouragement have kept me going through all the ups and downs of this year...Thank you all sooo much! Here's to a happier, healthier new year for each of us!!!
Debbie (Chichimaine)
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Nancy...I pray you will once again amaze & astound everyone with your healing powers. You are so loved...
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I second that Nancy, I've been thinking about you all week. Sending healing thoughts your way!
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hello, I was wondering are there any side effects from the mess you are on. Is this a pill you take everyda
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I'm sorry I meant to ask you are there any side effects from the meds you are on and, is this a pill that you take everyday
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Hi Bail,
It looks like these are your first posts on this topic, so I checked your profile and see that you might now have liver metastases after earlier TNBC?
There isn't one treatment for liver mets that we all get, but my guess is that your oncologist has prescribed Xeloda as your first MBC drug?
Almost every drug has unwanted effects, as well as those we hope will shrink or stop the cancer, but it's impossible to guess what any other patient will experience based on a general list of possible side effects and desired good effects.
Bail, if you are more specific about your situation and which meds, we may be able to help you through these early days.
Meanwhile, sending warmest healing wishes, Stephanie
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Let us know how you are doing Nancy, thinking of you......
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Nancy, thinking of you. I find you an inspiration and hope Abraxane will do the trick.
Stephanie, you mentioned you try natural remedies for pain. I would love to hear more about that
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Hi JFL,
Thanks for asking about my natural approaches to pain. Sorry this is so long, but I feel like I'm running out of time and want to get this written down while I still have the focus to do it.
JFL, I don't think we've met yet. I've only been at bc.org for a couple of weeks and it's hard for me to sort out who's who and what y'all are going through.
This is from my introduction I shared at the Dying and Death topic: My name, longtermsurvivor, isn't my hope or wishful thinking, but my lived reality. I've been living with advanced breast cancer for 25 years. While I can't give you my survival secrets, I can share a bit of what I've learned - how to maximize "ease of well being", engage healing allies, substances and practices, and what I've learned about caring along the way.
So, here's my take on pain and other unwanted symptoms.
I've had to live with them my whole life because of a rare genetic condition - breast cancer with lung, pleural, liver and peritoneal mets are later arrivals on the scene that affect how I live within my body.
Because of early unfortunate experiences with many meds and surgical procedures, I tend to use the least amount possible for the largest good effect and the least unwanted effects. I also seek out holistic and integrative approaches including substances, procedures, healing allies, practices, process, service and faith.*
I don't think these are widely engaged in the cancer, medical or wider world, but I'm highly motivated to live my best possible life, given my physical challenges. I don't try to get rid of or control pain now, but to learn from and through it. It is my companion, that too often clamors for attention.
Also, physical pain is just one aspect of total pain as described by Dame Cicely Saunders, the founder of the hospice movement.
"All of me is wrong." This is how one dying woman, Mrs Hinson, described her pain to her doctor, Cicely Saunders. Saunders would often re-tell the story to explain her ideas about 'total pain' where there are no clean divides between what is physical, emotional, spiritual and social.
I will work with and from anything that comes my way...though I'm feeling into my limits of what I can't yet do (unrelenting pain and nausea do require some meds, just not to the point of dulling consciousness or bringing unwanted effects).
JFL, I hope you weren't thinking I'd send a list of herbal, homeopathic, body work, acupuncture, exercise and other tips for dealing with pain and unwanted symptoms. Sorry!
I hope this is helpful to you and others.
Sending loving, healing regards, Stephanie
* My personal definitions this morning, subject to change and upgrading.
substances = conventional and alternative medicines I take or inject or infuse or rub on my skin.
procedures = things like regular draining of ascites, now through an implanted drain.
healing allies = doctors and other health care providers including acupuncture, mental/emotional/spiritual support, my hospice team and my circle of caring friends who support me. Allies are those who see and support my unique journey and offer additional support that I may or may not incorporate.
practices = things I do on my own to support healing - self-touch & massage, movement, diet, meditation, relaxation, MBSR, creativity, writing, etc.
process = the deepening of these practices into a lifestyle, an approach and openness to how I respond to anything that comes through life or my body symptoms or from wherever. This is where cancer becomes more of a quest than a hinderance and I follow the adventure into unknown places that have expanded and enlightened my life.
service = engaging my experience, strength and hope to encourage and empower others on their/your unique life journeys. It has taken many forms, but is useful for easing my symptoms, distracting me from my own woes and gives me a sense of meaning and purpose.
faith = my current challenge - trust in others and how I fall into their care and how I surrender my body to the slow dying process.
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Stephanie, thanks for your response. I have read some of your posts but we have not officially met yet. I read the discussion boards most days but sometimes go a while between posts. 25 years with advanced BC is amazing and inspiring! It is so valuable to hear from someone in your shoes as we all hope to make it that long. Have you taken the holistic approach the entire time? Your strength, peaceful outlook and positivity is infectious!
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Hi JFL,
Yes, holistic approach all through cancer and long before that because of rare genetic condition.
I forgot to emphasize the importance of intuition, rest and sleep as my healers.
Off to my morning nap now.
healing regards for all, Stephanie
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Stephanie, 25 years is a long time and it is admirable. It takes a special and highly spiritual person to grasp the whole meaning. I totally get you even though it has been only five years for me two of the, only stage four. You are amazing, kind and very much alive in every way. Warm and gentle hugs to you.
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Happy New Year to all of you ladies wishing this year will bring all of us , new hope, inspiration and healing all the way through and of course a cure if not for us for those who come after us. My prayers are with all of you , may it brings you comfort and peace of mind and pain free days all year around.
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The same back to you Woody! You are always so thoughtful about us all. Have a wonderful New Year and here's hoping for more good news on this battlefront.
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and happy new year to all of you from a very hot and sunny Australia. Here's hoping for a safe, happy and healing 2016. Personally speaking things can only get better!
Stephanie, thank you so much for your totally inspiring post. I read it several times, your wisdom and serenity shine through and it resonates with me some of your insights that I am slowly coming to realise. Intuition is something I am really tapping in to as I realise that this journey is highly personal and our docs simply don't have all the answers. Luckily my onc is very much a "how do you feel?" Doc rather than a "let's look at your test results" doc. And for those of us who led very busy and frantic lives previously, being able to rest and recuperate is one of the "benefits" of this new life. A wake-up call to slow down and smell the roses, or the ocean in my case.
All the best to everyone you have all helped me so much. Hugs and love from the beachside, down under
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Happy New Year to you also, Woody!! And all of the other survivors here! May this year bring peace and comfort and hope as well as cure for us all!!
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hello sisters.Happy new year
Well my new year seems to be off to a good start my liver enzymes are at a normal level. Dr is happy and we will do first ct scan on the 25th, excited and nervous. How everyone is well!!
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livn,
Happy for you starting the year with good news. I hope it will continue for a very long time.
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hi Steph just got back from the doctors and I have breast cancer in my liver and some in my bones. There are so many kinds of men's to take. Xeloda is one Paraplatin is another and Halavan is another. Can anyone give me some input on these. Waiting to have a liver biopsy. So confuse
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Bail, It doesn't say what your PR or Her status is but I am Pr+ Her- ILC and my Onc started me on Letrozole/Ibrance combo which are Oral Aramotose Inhibitors. Letrozole didn't last long so now I am on Faslodex/Ibrance combo as of last week.
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Bail
I also have bone & liver mets. Like Artista, I was started on Ibrance/Letrozole which only lasted about 7 mos, then went into a GDC 0810 trial for 3 mos and just started Xeloda this past Friday. You should go onto the "all about Xeloda" thread to get valuable info about Xeloda. It's chemo in pill form. I really can't tell you much about it because this is only day 4 for me.
Wishing you an easy time whatever you and your MO decide
Babs
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Bail,
The most important thing is the biopsy at this point , as it is possible for the cancer to have changed or mutated. The biopsy will give a clearer idea as to what treatment you should take. Keep us informed and wishes for the best.
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Artist, good luck to you on faslodex/ibrance with the least SE's . Keep me posted .
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Had the scan and I have mets in the liver and bone. They want to do a liver biopsy and I have some options to think about. Xeloda, Halavan, Paraplatin, any suggestions sout there?
scared and anxious
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Just checking in. Trying to keep up with liver metsters. Looks like some are getting results and some still looking at Tx options. Only sending best wishes for all of us. It's hard to be us isn't it? Prayers that those nasty liver mets can be decreased , or rid of.
I'm still on gemzar. Have two more cycles (3 weeks on 1 week off ) into end of February. TM down from 1380 to 650 in three months. Liver feels better. Scan end of February. Finally have SE under control. Lower dose and onc added small dose of steroid three days for fever. No fevers, rash or edema. Much better. I'm optimistic. Stable right now. 👍 Gemzar has helped decrease the mets I'm sure.
Best in the New Year. Improved for all.
Hugs
Diana
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That's so good to hear Diana! You deserve a big fat break on those SE's. I hope it works for you indefinitely! Thanks Woody, I will. Just hoping my liver enzymes have stayed down or gone even lower. I get my second loading dose on the 11th and have been back on Ibrance for 5 days. I was sort of thinking she would not start me back up on that until we checked the enzymes while on just Faslodex.....Going to ask her about that. Bail, I think you have to let your Oncologist makes those suggestions based on a lot of details regarding your particular situation
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Diana. I'm so glad Gezmar is working for you
Babs
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Diana, good news, happy Gemzar is working at keeping you stable, hoping it will do so for a long time. I join my hands with you in prayers for all of us on this thread and everyone on BCO . Hugs.
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Had my scans this week, and picked up results yesterday. Xeloda has reduced my liver mets! Not by a whole lot, but reduced just the same. They are all under a centimeter now. I feel pretty good about staying the course.
The only problem I see with this medication is that my liver enzymes are higher than they are supposed to be- about double normal. I think the med is affecting the enzymes, as this issue started on this med, not with the appearance of the liver mets. So we'll see.
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good news on reduction of mets Sandilee. My liver enzymes are also elevated a little; pretty sure from gemzar.
My onc said the one she watches is bilirubin. That one you want in normal as it shows how the liver is really functioning. Scans are the gold standard. Our blood work is off most of the time b/c of the drugs they are giving us. I try to not get too excited about elevated stuff. Unless it's TM.
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Sandilee, great news on the scans! Shrinking is good!
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Great to hear Sandlilee. Dreaming of the day I can say my liver mets are less than a cm. Not sure it'll happen really, but so long as they stay stable, it's good enough.
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Sandilee, great news on reduction, wishes for more reductions in the coming year yayyy!
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Sandilee, Any progress is always great news! Hopefully the enzymes don't keep creeping up as they did with me on the Letrozole/Ibrance combo. Mine ended up sky high like 500 and 700. Do your happy dance!
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Thanks, everyone. artistatheart- I didn't know that Ibrance/Letrozole would affect your liver enzymes. I didn't have that problem with it--it just didn't work for me. My neutrophils were very low on it, though.
It's so interesting how differently we all react to these medications.
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Hiccups, heaving, retching, vomiting...are others dealing with these too?
Can be treatment-induced unwanted effects or disease symptoms.
Would love to hear from others and am writing a post on hiccups to share later.
Thanks, Stephanie
I have mets in and on liver as well as in lung/pleura, nodes, chest wall, a few bones and in belly (ascites plus nodules)
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sandilee, i think I am still not sure if it was the (generic) Letrozole that caused the enzymes to shoot up. I feel that I had not been off of the Ibranc long enough ( a week) to give the enzymes a chance to go down when she pulled me off Letrozole too. Plus a lot of people were saying how differnet manufacturers use different fillers on the generics and they experienced less SE's when they switched. I asked my Onc about that and she dismissed me very quickly, in fact told me that there were no generic forms of Femara! Now she put me back on Faxlodex/Ibrance so I am anxious to see if my enzymes stay down. i hope so I do want to have to switch again so soon.
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Good luck with the Faslodex/Ibrance combo, artistatheart. I had a great, nearly 4 year run with Faslodex, by itself, where my bone mets reduced and then stabilized.
Do remember, too, that if you ever wonder if you're on the right track, a second opinion is always an option.
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Sandi...hooray for shrinkage! May it continue! 1 cm can be a huge celebration...I had some 8 cm buggers & I happy danced w/each scan!
Artist...letrozole is the generic for femara...don't know what your onc was thinking. I know I get nervous when I get meds from a different manufacturer. Last time I called my drug co & asked why my letrozole came from Israel. He said it was one of the major suppliers, but if I requested, they'd give me American made. He suggested tracking ses, but I had none, and he shared the same info about different fillers. I was on femara w/my 1st dx (before generic was available), continued letrozole through second & now after mets (when I stopped navelbine & now just have herceptin/letrozole). I considered it a failure...since I had the other dx, but there must be something my onc likes about it...can't figure it out. Hope your new regimen is the best!!!
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Sandilee, I did have a 2nd opinion but it was early in, so I would be going for a third, which I still think would be a good idea. Even if they concurred with my current it would ease my mind. The Letrozole/Ibrance was working minus the enzyme problem. I am still very curious if I could return to this AI later from a different formulation/company. Thanks Ronniekay, to me it was unsettling that she did not even know that what I was being prescribed by her was a generic form of Femara. She said that Femara was still under patent, there was no generic!!! The patent was over in 2008 with now 11 generics...It all seems like such a crapshoot sometimes, but moving on I hope the Faslodex is a winner too! I do have less SE's with this so far. Get my second loading dose tomorow. Sore butt here we come!
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Artist, good luck on faslodex, i hope it works for you as much as it worked for others. Sorry for the soar butt though
) but if it works, it would be worth it. Personally, i got four opinions upon my first dx and i went with the two which matched. I prefer not to take generic drugs unless necessary. Keep us posted. Hugs. -
Thanks Woody, If it is working I'll take a sore butt any day too, for sure! It actually wasn't bad at all the first round. I have just heard down the road it starts building up and getting worse. I just can't seem to get a confident feeling with this woman. She has been off putting more than once but I hope it changes as i get to know her. I still plan on adding a third person to the mix for my own peace of mind. As far as generics i was just curious if changing formulations i.e. fillers might help with the enzyme issue, but I got shot down pretty quick. How are you doing Woody? Feeling OK? did you have nice Holidays?
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they always shoot down when they don't want to answe. I have four oncs, i trust only two of them. So whenever the two in my country tell me something , iche k with my favorite two and whatever they tell me i do. I am sure faslodex effect will build up , but i hope it won't be so bad.
I has a great holiday mainly with family and some close friends. Had my PET and it is still clearand NED thank God. The next one will be in April.i hope you get the most out of faslodex. Hugs.
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That's fabulous Woody! May your NED never end! I am hoping to build a bigger team so I have choices can feel good about as well. Right now Faslodex seems like a good move. Most people feel pretty good on it. I won't get another PET until late February so we'll see how it works! Happy New Year!
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Happy New Year to you too Artist , i hope itwill bring you stability and good health. Hugs.
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Hello everyone.....I have been absent for quite some time. Someone pages and pages back had talked about being 'stuck' and unable to get their thoughts down.......that certainly describes me for the last few months. I finished a little over a year of taxotere and herceptin last summer...had a small progression near the base of the diaphragm and I was put on Kadcyla. The upside....I got my taste for food back and gained some strength. A big downside though.......it wasn't working for me! On the Monday before Christmas I got the results of my latest scans.....lymph nodes lit up in the abdomen, more nodules in the lungs, an enlarged node under my left arm and to top it off a palpable lump in my left breast. That was not a good day! So now I am on Navelbine weekly and herceptin every 3 weeks. Hoping it will knock this progression back.....I want to see my DD graduate from college in May so very much! So far I am tolerating the navelbine ok....getting tired again though. The Dr thought the breast lump felt smaller already so while I do not usually look forward to the next scans, I am anxious to see how this treatment is working.
I also had a procedure in Oct to address the pleural effusions in my lungs. They put talc in the left side and inserted a pleur x catheter in the right side that we have to drain 3 times a week. I really did not like the sound of that when the surgeon told me about it, but I have to say it has been better. One of the few bits of good news on my scan results was that the pleural effusions were much improved and the left side is almost resolved. I take good news whenever I can get it these days!
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Jaytee, welcome back. I am sorry for your progression but hopeful the lungs are better. I hope this combo will work for you . Looking forward to hearing in the near future some good news from you. Hugs.
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Jaytee- so sorry for your progression but happy to hear your plural effusions have improved.
Take any win you can and savor it!!!! You deserve it!
Babs
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Jaytee, welcome back and thinking good thoughts for that next tx. A resolved pleural effusion is a good thing for sure. So my liver enzymes were up again today and my Onc and I both suspect it is the Ibrance. i also think it is what is causing the rapid heartbeat so I am quitting that for awhile to see how it goes. Onc seemed much more open to listening to my opinion today and even asked me if we were OK. So it seems we are back on track for now which I am happy about. We decided to go ahead with the 2nd dose of Faslodex. The liver Dr wanted to do another liver biopsy but I asked my Onc if we could wait to see if staying off the Ibrance brought down the enzymes first and gratefully she agreed.
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Thank you everyone. I definitely can take deeper breaths ....and the cold winter air is not making me short of breath like it did last year.
I say goodnight with good thoughts and prayers for you all.....that all of you that are Ned will stay that way for a long time and that more of us will get that good news! For those of us in active treatment, prayers for finding the right treatment for each of our situations, wisdom for our Drs and ourselves, for a night of good rest so we can face whatever comes our way tomorrow. Goodnight and hugs!
judy
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Thank you everyone. I definitely can take deeper breaths ....and the cold winter air is not making me short of breath like it did last year.
I say goodnight with good thoughts and prayers for you all.....that all of you that are Ned will stay that way for a long time and that more of us will get that good news! For those of us in active treatment, prayers for finding the right treatment for each of our situations, wisdom for our Drs and ourselves, for a night of good rest so we can face whatever comes our way tomorrow. Goodnight and hugs!
judy
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Ascites, paracentesis procedures and indwelling drains
Anyone else with liver/peritoneal mets dealing with this right now?
My usual penpals, Rose Valley and Torridon, are offline and I'd like to connect with others facing similar situations.
I've been dealing with ascites for over a year and have had an Aspira indwelling drain since August 2015.
Okay to PM or reply here.
Thanks in advance for answering my call, new friends.
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Thankfully not Longterm. It sounds like a massive misery though and got to hand it to you for dealing with so much all at once. Best wishes to you.
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i JUST FEEL OVERWHELMED TO POST THAT I RECIEVED THE PETCT SCAN RESULTS TODAY AFTER 3 CYCLES OF GEMAZAR AND CARBOPLATIN
THE PET CT SHOWS NO UPTAKE ANYWHEREIN BODY AND ALL LIVER LESIONS ARE REDUCED IN SIZE AND DO NOT SHOW ANY UPTAKE ( NO SUV) AS WELL AS THE ILLIAC BONE IS COMPLETLY HEALED (NO SUV)
IN SUMMARY IT STATES THAT---PATIENT HAS SHOWN COMPLETE METABOLIC RESPONSE TO THE TREATMENT
WE MET ONCOLOGIST TODAY AND HE SAID TO CONTINUE WITH 3 MORE CYCLES AND THEN SWITCHOVER TO AI WITH OS
GRACE OF GOD NOTHING ELSE
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Many
All I can say is reading what you wrote made me cry. That is just so wonderful!!!!!! I am soooo happy for you!!!!! May this continue for a VERY long time!!!!
Babs
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Oh Many,
What wonderful news!
Congratulations!
I hope you feel even better than your scan results indicate, bringing complete ease of well being and ability to participate in your chosen life.
May your period of NED last a good long time and may AIs be gentle, effective treatment for you.
warmest healing wishes, Stephanie
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many, Celebrating your good news with you! I love to read about good results....wishing you all the best!
judy
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Many,
Wonderful news deserving dancing and celebrating! Wowwwwwww jjust wonderful! God bless yo
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Many, The news we all hope to hear! Happy Dancing for you! May this last forever!
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Many- God sent angels and more to you..Happy for you and your family...Go enjoy every single day!
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I am thankful to everyone for there warm messages to me
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Just saw this, very big congrats and hugs Many!! I love hearing good news!!
Alissa
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many & others w/ good reports - - thanks for sharing the great news - y'all get the credit for the giant smile on my face! congrats & enjoy!
sending my best to everyone for a year filled with great reports! I'm not checking-in very regularly, but I do try to 'catch up' & so appreciate hearing about everyone's experiences - the good & the setbacks....
thank you for contributing here - you've made it a phenomenal resource!
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ct scan was all clear. Now onto my brain MRI
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If I may ...
leftfootforward, congratulations on your CT!
And good luck on your MRI! Let us know how it goes.
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left foot
Hope your MRI results are as good as your scan results or better!!!
Bab
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thanks everyone.
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Leftfoot, great news on your CT wishing you the same results for MRI . yayyyy!
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Thinking of you leftfoot, Best wishes and keep us posted!
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left foot great on liver. Woot. Now the brain. Yep.
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here is an interesting link from today's NY1,
http://www.ny1.com/nyc/all-boroughs/health-and-med...
I am a reader, not much of a poster, and do not miss any of your posts.
Pray for every sad and happy for every good news I see and wish we all see the day when Obama wins the war on cancer
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For those of you who knew Leah_S , i regret to inform you of her passing few days ago. May she rest in peace and may her family and friends find solace that she is at last at peace. God bless you all.
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Thanks Woody, So sad to hear this! Hugs to all of us and to her family especially!
alissa
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So sad to hear about Leah's passing. She was such a fighter, always positive about taking on new treatments and with a great sense of humour. She will be greatly missed but at least she has no more pain. Rest in peace Leah. Thoughts to family and friends x
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hi all. Had first ct scan Thursday hoping gut results Monday when i see Dr. I am nervous and scared, hoping for good news. Fingers crossed. Hope you all are well
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Good luck on your scan results Lvn i hope they are very good . Keep ys posted. Fingers crossed
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Lvn-hope you get good scan results!
Babs
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Good luck, Lvn, we'll be thinking of you.
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hi all. Well results are ad follows, one lung lesion is gone, the other one had shrunk x3. Liver had 40% disease now is at 10%. So Dr says that is good and I am doing better than average.
So why do I still feel like the walking dead? That's good news right? I guess i was hoping to be ned already. Thanks for the replies.
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Yes, LvinAZ, that is great news! It really, really is! I get how you feel, though. My liver went from over 50% to disease to a little less than 50% to stable, not less, just stable. This is great news my doctor says. Stable is what we strive for. I think yes, but I was hoping for better. So be so excited...gone and shrunk and 10% disease is superfab when the goal is stable. You overachiever you. I might have to be jealous.
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Hi, Livn. Glad to hear you got good scan results. Your chemo is working! My onc says a person doesn't have to be NED to be doing well.
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Livn,
Great news!! Really great. The disease is retrieving even if not gone ,this is really a good results. Stable with decrease this what every patient and doctor hope for. I hope you continue to shrink tomurs and keep doing well.
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thanks ladies. It's so good to have you all for support. I hope to are all well
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Lvin
So happy for you-decreases are great!!!! You need to do the happy dance now!!!
Babs
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Heck ya Lvin, that's GREAT news! Anything working backwards is fantastic! Happy happy dance!
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tldr: 1st change in therapy & could use some help… if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a lot, so location is fairly open). THANK YOU!!!!
***************************
I'm sure this is not rare, but my 1st tx change, so probably over-reacting & could use some help… why does it always feel like a sick-twisted-crap shoot? thank you for listening & helping if you can!!
great news 1st - awesome brain mri!!! near complete resolution of both lesions w/ no other anything!
ug news - last PET showed "suspicious" teeny portacaval lymph nodes w/ SUV 5.0. plan: watch & repeat PET & add MRI in 2 months.
2 months later...
PET: no significant change to "PRESUMED" metastatic lymph nodes: same SUV 5.0 & only mild enlargement in 2 months
MRI: "PROBABLE" lymph node metastases measuring 9mm correspond w/ PET & new "INDETERMINATE" 9mm hyper-enhancing lesion on liver
PLAN: as it's slow-growing, watch & wait w/ MRI at 3 month intervals
so, is it progression? small, slow-growing, SUV 5.0, asymptomatic - "presumed," "probable".... who knew there were shades of progression w/ HER2+ disease?
tdm1 is 2nd line therapy per standard-of-care. med onc says no tdm1 'til growth accelerates -- even it it grows slightly each scan, no change.
no biopsy - as it's so slow-growing it most likely hasn't changed receptor status.
name of the game is stall... manage disease while preserving best QOL - aka palliative, I get it. if I can get 3+ more months out of herceptin/perjeta, isn't that better than switching now? conservative, but perhaps wise.
OR, call it progression, switch to tdm1 & aim to get disease firmly controlled, asap? no promises it'll work, that I'll tolerate it (generally is well-tolerated) & likely increase SEs. I already have brain mets, so no worry about it 'spreading' to my brain.
I can build strong cases for both options. I'm looking for a 2nd opinion & will try for tumor board, if appropriate. anyone familiar w/ similar case? I realize there's no urgency, but I'd like to get informed asap. if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a lot, so location is fairly open). THANK YOU!!!!ps -- also, anyone doing tdm1+perjeta?
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spicy- that's the frustrating thing with stage 4 isn't it. There is no right answer.
Tdm1/ perjeta probably my next line of treatment should my current one fail ( Xeloda and herceptin). If I stay stable long enough tykerb might become an option again ( likely not).
My MO ( all 2 of them) seem to be of the opinion once you have to change Meds the one you leave isn't viable in the future.
My MO also viewsany growth as progression and have been very proactive.
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thank you leftfoot, very much appreciate hearing your experience. sounds like you've got a good team going.
hate how luck-of-the-draw can make such a crucial difference in medical care. met with a super nice palliative care doc who may be able to help me more gracefully navigate 2nd opinion. I really freaking LOVE that specialty - always feel like they really are actually there to help find solutions. haven't more than a few times, but they've managed to find something they could help me with at each appt. such a tremendous relief. wished I'd known to ask for the referral earlier.
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Hi spicypetunia,
I too love the palliative care speciality and my palliative care doc of nearly 5 years. Well, now he's my hospice doc.
Anyway, he encouraged me to have surgery to get my lung linings sealed and his partner helped me get a drain installed for ascites from liver/peritoneal mets. Though these were expensive and invasive procedures, I am ever thankful to have not suffered outpatient draining for 44 months and 5 months respectively.
I like the both-and approach of palliative care that focuses on my ultimate well being and comfort.
Hospice is under the palliative care umbrella, but Medicare and medical insurance restrictions make hospice an either-or approach - not quite as friendly for the person who still wants to do every possible everything.
blessings for all, Stephanie
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Just found out that for the first time since my MBC dx, my tumor markers ( which are always spot on) went down and they went down 14 points. The Xeloda is working for me.
Wishing everyone similar success with their treatments!
Babs
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Yeah babs! May Xeloda work for many moons! Did the Femara/Ibrance combo work at all? Just curious as I failed the Ibrance due to elevated liver enzymes, so we switched all together for now to Faslodex. But my Onc said we can probably revisit Femara down the road....
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Thanks Artista. On the Ibrance/Femara I was basically stable for 3 months-my TM's went up a few points but then they started to really climb after that. My first scan at 3 mos of the combo was stable with a few possible additional mets on the bone but nothing definitive and my second scan at 7 mos showed the definite progression to the bones and to the liver too.
Babs
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Very glad to hear the TMs are going down now, Babs. Down with TMs! Go Xeloda!
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glad Xeloda is working for you babs and h.ope it will continue for a long time
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yay Babs
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Thanks left foot
Babs
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can't rememberi if I posted this here or not.
Got my brain MRI results and I am still clean.
What a relief.
Thanks for your sipport
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leftfoot ,
Yayyyyyy , wonderful ! I hope it stays clean all the way. Cheers to that.
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Leftfoot- what a relief for you!!! Great news!!!
Babs
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I have a question for everyone.
What do you know about chemo sensitivity testing? My BS recommended I see an MO for a second opinion. He's a big advocate of this testing and my regular MO is an advocate of genome testing.
Would like your input.
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HI Babs, I have no answer to your chemo sensitivity question, but am hoping you seek and find adequate treatment for you now.
Good news, Leftfoot! Celebrating with you.
I have a question about liver pain - I've had numerous liver mets for two years and ascites for a year. With tumors both in and surrounding my liver, the pain seems related to what's happening on the outside (capsule). Until recently! Now it feels like I'm being stabbed just below my sternum. It could be the ascites which has recently increased in volume (3 months pregnant even after daily draining). But I wonder why it's now localized after being diffuse for so long?
Does anyone else have liver pain with liver mets, how does it feel and what seems to help?
Lying down, sleep when possible, increasing pain meds - any other tips?
Thank you all so much for being here in my time of need.
Oh, I should mention, I'm on hospice, so am not seeking second opinions, testing or aggressive treatments (though I'm still on Femara/letrazole).
Thanks again!
warmly, Stephanie
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hello babs,
For me it was intelligent genomic testing which cited which chemos are most likely to benefit me and the ones the least i could benefit from. However, it was helpful in assreting that i am Her2+ after two negative FISH. it changed my whole treatment to which i responded very will and i still do. My second dx my her2 was equivocal which was totally negative in my first dx. To me this was the right test to do. I was about to request the sensitivity test but then i had a change of heart. I can tell you that genomic testing will name each gene your cancer has and a recommendation as a conclusion as to how you may respond to each chemo or targeted therapy. I read on bco that there is a genomic testing kit in the US and it costs 200$ it was not the one i did. Mine was fairly costly. I hope this helped , my advise is for you to choose the one you feel is more adequate to your case.
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Stephanie, i am so sorry you feel pain . I can tell you the only time i felt pain in the liver was before my dx and when i did not know it was back. It was dull and very deep not a stabing pain. But like you adequately mentioned , ascites cause pain. I pray you soon get relief because i know from my aunt it can really be an unbearable pain. Holding you in my thoughts and my prayers. Sending you healing lights.
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Thank you, dear Woody!
Your kindness brought a sigh of relief to my troubled mind.
Am back in equilibrium again.
Back to dancing with pain & cancer, instead of crawling about. Yay!
Many blessings for all of us! ~ Stephanie
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Hi all!
I haven't been on for a while...again. I've seen some great news...LeftfootForward, wonderful news on brain mets!!! Our ever faithful Woodlby is still posting daily and lifting all with her generous spirit and warm heart. I almost feel guilty posting with good news when I see so many of us still in pain. I just got results from my third set of CT scans in a row showing no evidence of liver mets and no change in lung nodules!!! My onc actually said "This is borderline miraculous!" The Navelbine I took after failing with Xeloda kicked the liver tumors to the curb and they have not raised their ugly heads since.
I am so grateful for each day and thankful to God who has seen me through the last 5 years of cancer "fun!" Just want you all to know that it is possible to have remission from liver mets and I'm wishing that for each of you!!!! Debbie
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Jaytee,
Here's to hoping the Navelbine works as well for you as it did for me. It was a surprise when my liver mets were found to be triple negative ( was originally ER+, PR+, HER-. We tried Xeloda first, but I had a sever reaction to it...caused my coronary arteries to spasm...three days in icu and no more Xeloda ever for me!
Anyway, although you are not triple negative, I'm still believing the Navelbine with kick some butt with the progressions. Sending prayers your way!
Debbie
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wonderful news chichimaine!! Never feel guilty, your good news makes us all feel good that there is hope that we can all follow in your footsteps. When I first started this mets journey over sixmonths ago now, I really thought that was it. Now with stories like yours and all the positive stuff on here I can truly believe there's hope for me and all of us. Keep up the good work!!
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Chichiiiii,
Wonderful news ! Tou desreve a happy dance and i am doing it. This is great i am so happy Nevalbine worked for you and kicked your liver mets and it is great that the nodule on the lungs is stable. I hope you continue to give us good news . Enjoy your time away from liver mets and God bless you. Loads of love.
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chichimaine......I am so happy and encouraged to read your good news this morning! Praying for you to have continued good results. I have got scans scheduled for the 18th. Thanks for thinking of me and for all the prayers! Wishing everyone well this morning.
judy
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Debbie
So happy for you. Whenever I hear of someone else's success, it gives me more hope so I'm truly happy you shared this info with us!
Babs
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Debbie, no guilt please, only celebration of your good news and gratitude!
I'm new here and we haven't met yet, but I'm one who's doing not so well with liver mets. Yet, I'm so very happy that your treatment has yielded such good results for you!
Thank you for sharing your good news with us.
warmly, Stephanie
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that's wonderful me Debbie. Always share your good news.
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Chichi...so happy to read your wonderful news! When my liver mets were found in 2012, my onc said she always starts mbc patients on navelbine. She said it's a very good, old chemo (derived from the periwinkle plant) and that its ses were more mild...helping one to not look or feel like a C patient. After 22 months on it (w/h/p), I started feeling a bit run down...which is when my new onc said he was taking me off. I remember my liver enzymes after 1 month were normal, TMs fell quickly, my first scan at 5 mos showed 80% reduction, 2nd scan 30% more & 3rd & last scan in Aug, still stable...even said NED. SUE is another navelbine gal that it worked wonders for! I am so overwhelmingly happy whenever tx works for a sister. My onc is busy researching more in-depth studies on defining best tx for individual tumor types. We were invited to his lab open house...such smart people!!! Wishing everyone healthy days!!!!
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Thanks for all the response to my great scan news. So good to hear from you RonnieKay and Woodlyb...I have missed you both. Thanks LeftFoot and Isy, too. Jaytee...I will be praying for good scan results on the 18th...be sure to let us know. And welcome to all the new members...I'm sure you would rather have joined a book club instead of our "fun" club, but I'm glad you are here among those who understand and offer friendship, a shoulder to cry on and the best encouragement you can find anywhere. Thinking of you all and wishing a blessed night!
Debbie
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Chichi, I agree that I want to hear all the good news too. Some days we just need that extra shot of optimism. It's great news and I'm very happy for you! So RonnieKay, did you stop Navelbine and if so did you start something new yet? That is so fantastic how well it worked for you too!
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Chichi i miss you more but i am so glad you are doing well . I was about to pm you to check up on you. So now i am happy very happy for you. Kisses.
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So, my liver enzymes took a good little dip downward again. So I guess I don't have to do another liver biopsy yet. Yeah!.....small steps. I just hope they keep on sliding back to normal and I can just keep on some kind of an even keel for awhile.
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Artistathea-I too am hoping your liver enzymes slid all the way to normal-and happy they're going in the right direction!!!
Happy News!!!
Barbara
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Thanks Babs, I'll take it.....How are you doing lately? How long ago was your 7 month scan?
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Artisthea-My last scans were in December. My next scans are 2/22. My MO moved them up a month because my CEA went up (but, honestly, my CEA has never been indicative of what's going on with me) My CA15-3 went down 14 points last month which made me really happy because it's always been spot on so I'm thinking the Xeloda is working! But, we'll see after I get my scan results!
Babs
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Babs, I sure pray the Xeloda is indeed working for you. From what I have heard your CA numbers either are spot on or no indicator at all, so that is a great sign. I haven't had my TM's done for almost a month. I get them again on the 22nd, same day as your new scan, so I will be thinking of you on that day! I sort of wish my Onc would move my scans up from end of March. I have been so up and down with liver enzymes and then I changed meds pretty quickly, so I am sort of confused as to where I'm at. Although sometimes ignorance is bliss......
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So, mixed bag on my latest scan results. Liver continues to shrink on gem/carbo and most of lesions necrotic, just a couple of persistent ones. However, cancer has been marching on in my bones, where previously had none. Feeling very disappointed as felt I could cope whilst it was in just one area, even if it was the liver. I now have a few spots in pelvis, right femur and scull. Looks like the chemo is good for the liver but not the bone. Having a two week break from chemo and onc is going to confer with radiologist as to whether bone spots are definitely new. What next I wonder?
P.s. Just had a fabulous week in Singapore, walking round for hours in heat and humidity, eating very dodgy and cheap street food, no ill effects! Am encouraged by this, as at least I feel really well and have loads of energy which has got to be more important than crappy scan results
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Isy, I am very sorry to hear this news. It sounds like you are taking it in stride, which we must do. It's the clear better choice of our two options. I am wondering how often you have a bone scan since your mets were previously just in the liver. Mine are just in my liver and I have only CT scans of chest and abdomen every three weeks. Onc said she doesn't usually order other scans unless their is progression or I have symptoms but that she could order them if I wanted.
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Kaayborg, I had bone scan when first diagnosed back in June but since then only CT scans like you, after every three rounds of chemo. Nothing showed on CT scans and no symptoms. I think onc just thought it was worth doing the full scans this time, so had brain CT as well which I don't normally have.
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Artist,
I am very happy Faslodex seems to be working , i hope they keep sliding
). -
Taks Woody, me too. I hope it is working on the tumors too. Wish I could still take the Ibrance as well as many seem to be enjoying good results. I don't get another scan until the end of March which is tough. How are you doing these days? Isy, it is so scary to realize how fast things can change. I mean we all know it in our hearts but hope springs eternal right? I know that is so disappointing about the bones but glad you are focusing on the positive. In my mind having shrinkage in the liver almost balances out that bad news about bones.....I have never had a CT scan and wonder when they are used? Hang in there Isy, they may double up on the meds to work on both things at once. Singapore sounds like a blast. I've hardly been anywhere in my life.
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What kind of scans do you get, Artist?
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You and I seem have a lot in common as far as time of diagnosis, mets, and treatments go. I may ask for the additional scans next time. Very interested to hear how your treatment may change in light of this. Wishing you and all the very best.
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we do Kaayborg. May be worth asking for a bone scan if only to put your mind at rest and since bones obviously don't show up on CT scans. From what I gather doc is going to confer with senior radiologist to ascertain if bone mets could have been there originally in which case I would continue on the gem/carbo. If not then classed as progression so onto something new.
Yes artist, I take the bone mets with a pinch of salt (can't believe I just said that!) as reduction in liver more important. I know that bones can be easier to control and live with. It is hard though when you're plodding along fosussing on a particular course, thinking you've got things under control and then bam! suddenly everything changes
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Artist-thanks so much! I'll be thinking of you on the 22nd and am hoping those pesky TMs go down a lot!
Isy-I have both bone mets and liver mets. Up until I started Xeloda, my liver mets kept growing. Its the liver mets that scare me the most so having regression with that would be great news.
Babs
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Shetland I have had 2 PET scans since July and 1 initial bone density scan because of Femara. I agree Isy about anting to stay a course. I started on Femara/Ibrance combo and had to stop 3 months in despite an improvement in scans and TM's due to elevated liver enzymes. Now am just on Faslodex and have no idea if it is working until my next scans in March. Scary and frustrating for sure.
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hi liver metsters
Just checking in. Reading where you are all at with this nasty cancer business. Only hoping and praying treatment will knock those mets down for all of us.
I don't know my status until scans end of feb but my kidneys are within normal range (creatinine) the last few months. My liver had stopped aching. Been on 3 weeks on 1 week off gemzar since October. Finally have horrible SE under control with low dose oral decadron during 3 really bad days. I was ready to stop the gemzar; high fever, rash that looked like measles and edemia. Thank God for decadron. Major issue is low reds and Hemogloblin (8.5). Lol. I walk upstairs and I feel like I ran a marathon. Not in a good way. I'm not sure if I will stay on gemzar or switch ; depends on scan. TM did come down from 1300 to 680 and last check it was 680. But I've had two surgeries replacing port as my skin had hole in it. (Can you stand it?) 😱 That would be three ports in a year and half.
Anyway. Wanted to touch base. Only sending hugs and good news for all of us.
Not today cancer. Nope. 👍😘
Diana
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Diana - 3 ports in 18 months?! You should have started a punch card, you're due a free one by now.
Glad the SEs are under control, I'll be praying for you with those next round of scans.Isy - your trip to Singapore sounded great!
I'm plugging along, but things are rough these days. I'm on abraxane, which seemed to be working for a few weeks, but based on my pain I suspect is no longer working. TMs next week, so we'll have more data, but I'm pretty sick. Each day is a little different, but lately I've had a lot of chest pain (referred from liver) and strangely a lot of pain on my left side, including my left clavicle (feels like someone hit me with a baseball bat). I can barely eat or drink because I feel so uncomfortably full. If all that wasn't enough, I have osteonecrosis of the jaw from so many years on Xgeva, so my jaw is painful. My fatigue is overwhelming too, I'm proud of myself if I can do one thing during the day, mostly I sleep. I'm pathetic!
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Nancy glad you checked in.
Doing one thing when you can is a victory. You are inspirational to me. Courage. You demonstrate so much courage.
Well. Sounds like you are really uncomfortable and I hate that. So many of us thinking about you and sending you comfort and less pain. I hear that you are really sick with liver. Sigh
I wish there was something to do to help you.
😘
Diana
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nancyh- I'm so sorry things are so hard for you right now. I hope you can find some relief soon.
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((((Nancy)))) Thinking of you! Wish you felt better.
So many names here that I know and worry about…
Love to you all…
Rose.
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Nancy-hoping you feel better soon
Babs
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I agree steelrose..everyone is on my mind & in my heart. It used to be that as a stage 2 gal, once we all got through tx, our chatter was about family, work, life w/out bc. Now, none of us have that luxury...there is no life w/out bc.
Nancy...your courage is nothing short of amazing. I know that word gets used so much (especially by me), but when you stop & think about what it means, "Astonish Greatly," that is what defines you and your will to live. I'm sad that you're feeling terribly ill...and I know your pain threshold, so it must be awful. I hope they'll find something to control the pain...and of course prayers for healing, above all.
Sending love on this Valentine's Day.
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Nancy and Diana, you both have been through so much for so long, yet you keep going so bravely. Respect and love to you.
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I think of you both often as well. Diana sounds like you are hanging in there. Hoping for great scan news and hope the SE's continue to abate. nancy, what is pathetic is how this disease robs us of our normal lives and vitality, certainly not you. Your posts have helped me tremendously and I am praying that you find these symptoms abating soon and you get some relief. I hate that you are going through so much! Thinking of you on Valentine's Day......
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Thank you, ladies, you really lifted my spirits tonight. I'll keep you posted.
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Nancy, i hope you are feeling better, wishing you comfort and peace.
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Hi All
I have a question for you.
My ALT has been going up, down up etc. but usually within the 14-22 range This past blood test it was 43 which is over the norm. What does this mean?
My AST has been up and down too-usuually 15-22. This time it was 28 which is still in the normal range. Not sure what to make of this.
Appreciate your input
Babs
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babs - My ALT and AST went up considerably about three months into XEloda. For two blood draws (two months) my numbers were almost double what they should be. But then, amazingly, this last month they were back down to normal! I have no idea why they went up, but I did have a scan, and my liver tumors regressed a bit. I don't know if it has anything to do with the enzymes going up or down...it's a mystery. But don't be too worried, as they may go back down. My onc says unless they are about 5x normal, they don't get too concerned. Yours are not that out of whack. I'll bet your doc just watches and says not to worry.
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babs, when I was having trouble with elevated enzymes one was 550 and one was 780!!! Sometimes things can cause small changes like a glass of wine or some OTC's. That is so miniscule compared to what they can do I hope you are not stressing over it...
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Sandilee and Artistathea-thanks for your answers. My Dr. never mentioned anything about these levels to me-so I'm sure she wasn't concerned. I was just curious since for some crazy reason I decided to REALLY look at my last blood tests tonight. I guess I didn't before today because all I saw was thet my Ca15-3 had gone down and I needed to focus on that!
Thanks again,
Barbara
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My doc mentioned wine, too. Apparently one glass of wine can really make a difference in liver enzymes. I haven't been drinking at all since my liver mets, but apparently they can go up and down for unknown reasons.
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Sandilee- I was never a big drinker- maybe a few sips of my hubby's wine once or twice a month. Since my liver mets I haven't touched a drop! So not worth it to me!!!!
Babs
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Babs...I remember my onc was not concerned once when my lactate dehydrogenase was 199...she said it was probably a mishandled blood specimen & said not to be concerned unless it kept going up & up. I don't know about Alt or Ast being higher. Mine are similar to your usual counts..13-15. How often do you have hepatic function tests? As much as I worried about seeing it every 3 weeks, now that I'm having them every 6 weeks, it's harder. How do you get a real scope on zigzagging tests if not regularly done. They may be totally normal, but I'm so much more at ease when they're low, so hoping they'll go back down fast!
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Sandilee is right, they can go up and down a bit for unknown reasons. It's just when they spike a lot and stay there that they worry. I am hoping on Monday that they have gone down even more. Last time they were in the 160/240 range....If they haven't they want to do a liver biopsy.
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Ronnie Kay
I get blood tests every 4 weeks. This past month the ALT went from 19 to 43-that's the biggest jump to date.
I guess I'll just ask my MO next time I see her-and then I'll have another test done to compare the counts to
Babs
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Whoa....I missed Artist & Sandilee's comments when I was typing. Artist...must be my chemo brain...forgot your counts were high..hoping, praying they keep a downward spiral!!
My onc also said amount of exercising before tests can sometimes alter counts. I always go over my results on the computer in my infusion room w/the nurse, and get printed results if I want to study them before they're on the email system. I can get obsessive...which isn't healthy. I had high kidney function results for a few weeks, just out of normal range & the nurse called onc, gave me fluids, said to take in more electrolyte-type fluids and they were back to normal the next test. My onc said the same thing about alcohol, bans...though I usually only had a Baileys for Christmas...lol. I've probably had communion wine 4 times in 3 years & each time I was nervous :-) My Ca27/29 is the only thing takes a day before it results. I call my onc nurse Fri after Wed infusions (only herceptin now). Last time I thought I'd be brave & not call, just wait for email. Sure enough, my test went from 5 to 14, highest jump in probably a year. It sounds so stupid, being way below normal & knowing they zigzag, but there's always the "why" question. Truly a roller coaster ride.
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Ronniekay, I'm a Bailey's girl too! The one cocktail I allowed myself during the holidays. It's not stupid at all than any little variance jangles the nerves. This disease puts you on high alert......I think my enzymes will come down again this time. Then I can start stressing over scans in March!
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I'll drink (some nice chilly water) to that, my friend!!!
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Hi, I'm new writing on this topic and have a unique situation. I was wondering if anyone on this thread has had part of their liver taken out (hepatectomy), minor surgery, or had intervential radiology (using microwaves) to remove a BC liver met? I was diagnosed with a liver met in 2001 and it disappeared after 6 months of taking letrozole (what a miracle!). I took letrozole for 14 years but a liver met finally made an unwanted return this summer. I have reduced the size of it with Faslodex and Ibrance and my turmor markers dropped way down (but still not in the normal range). Now comes the decision of what to do. I talked to a surgeon yesterday who talked about many of the options. He will bring up my case before a tumor board next week. I just want to know if anyone has gone through surgery for their liver mets and what were the results. He said I was an "out of the box" situation since they don't usually recommend surgery for BC liver mets but I only have one and am in good health otherwise.
Thanks for any information you can give me.
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NinaCa I will be having RFA to a less than 5mm liver met. I just thought I would not want to look back and wish I had not done everything I could to achieve NED. Surgery is more invasive but RFA (if less than 2cm) takes less than 30min as an out patient. Go for it! Life it too fun to miss
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Nina- I had a partial lobed tony in July to remove a single tumor. I chose surgery over RFA for a few reasons. I can elaborate here or you can PM me. In the end I chose surgery because they said they couldn't guarantee me. Biopsy sample with RFA. I wanted to make sure my tumor type hadn't changed as it we a relapse after 2.5 years of NED. Surgery Was late on Wednesday and I as home on Friday. It was laparoscopic.
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Nina - I had a liver resection in August 2014 to remove the necrotic remains of two 2cm liver mets that had been smoked out by chemo. Since then I have been on letrozole, just switched to tamoxifen as my tumour markers are not behaving - with a Pet scan last December giving me a lot of confidence that i'm still NED, 18 months later. Having just one area of mets in one organ is called oligiometastatic, which is a good position within the serious context of mets. My onc is treating me as curative because of this, so aggressive chemo then surgery. The surgery is a big one, and the first few days in hospital were tough, but nurses are wonderful people and I was well cared for and I was amazed at how I quickly recovered, became mobile and was soon walking about. I had to take it easy for a few months after. My oncologist says my liver has regrown and shows on scans as healthy just a bit of an odd shape. Psychologically having the surgery remove the nectrotic tumours really helped my mental recovery, I am really glad that I had the surgery and if needs must, I would do it again.
Hope this helps. Happy to answer any questions via a PM.
Boo
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HI Nina,
I've too many liver tumors to count or treat directly, so I can't help you with personal experience.
Here's a website that may be helpful for sorting through your options:
This article may be helpful in orienting you:
Oligometastatic breast cancer: A mini review
excerpt:
Unlike pulmonary resection, liver resection is practiced less often but multiple retrospective analyses in highly selected group of patients show favorable long term survival. Other techniques of local control like sterotactic body radiotherapy and radiofrequency ablation are being increasingly used, but their role is not yet clear.[11,19]
I have a friend with breast cancer who's had individual tumors surgically removed or topically treated for many years. In between she's worked hard, played hard and enjoyed life immensely.
Nina, are you in N. or S. CA? I do know a bit about SF Bay Area options, so ask regional questions too.
Well wishes, Stephanie
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Reading liver metsters posts. It's hard. Finished scans last week.
Liver has improved 50% with 5 cycles of gemzar. Big lesion shrunk 50% , smaller ones smaller 👍 And no NEW lesions. Will continue on gemzar couple more cycles.
Progression in bones ; but consult with RO on rads.
Brain. Clearly b9 mennigona.
Kidneys look bad but are working close to normal.
I'm cashing in more time at the moment.
Not today cancer. Nope.
Hugs
Diana
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Diana-happy to hear of your reduction of liver mets and that the brain is benign.
Glad you're cashing in on more time!
Happy dance
Babs
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Diane Wowwwww, wonderful news , i am so happy for you! This is great and NO and NO not today cancer . Glad you cashed more time , wishing you more and more time
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Thanks for the information Stephanie.
The mini review on OMBC was excellent (Oligometastatic Breast Cancer-learned a new word)- I'm in Northern California, Bay Area, a Kaiser patient. Are you the Stephanie that posts on Smart Patient? Not sure what the difference is between SIRT, RFA and Microwave ablation and the difference in outcomes if there is any. This is a great place to gather first hand experiences on less frequent problems I don't feel so unusual.
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great news Diana! gemzar is good! make it a double on next scan to 100% reduction!
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Awesome news, Diana!!! I'm so happy to read this, you made my day. :-)
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Yay diana. You have the right attitude.
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So happy to hear Gemzar is doing its job, Diana! Keep shrinking!!!! I'll bet your kidneys will kick back into full steam ahead after your Gemzar finishes its job! Hoping the bones stay strong...cause not today cancer...nope :-)
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great news Diana!
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HI Nina,
I am Stephanie from Smart Patients!
So glad to find you in both places.
In spite of being an active participant at SP, I joined bco a few months ago to participate in the Dying and Death topic/thread and meet others with implanted drains and advanced breast cancer. Most of my attention is focused on that, but I visit other bco topics/threads to keep up with others in similar circumstances.
bco really has critical mass for breast cancer, but you've a resource at SP that I don't know whether you've fully tapped. You can post with the tags <liver mets> and <crossing disease boundaries>, adding RFA and other related terms (I think they're tags too). Since these treatments cross disease boundaries, you can draw on the experiences of many there who have different primaries but need treatment for liver mets.
As I said, I'm beyond aggressive treatments and on hospice, so don't spend much time on this topic, in spite of having many mets in and around liver.
Nina, happy to see you here and hope you find all the best sub-groups for you at bco!
warmest healing wishes, Stephanie
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Stephanie...as you know so well, we wish none of us had to be plugged into this site...but you became such an important part of the boards so quickly. I'm glad you found us...because your determination, knowledge, caring attitude & love for all, is an inspiration beyond expression. Thank you.
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Got my scan results this AM. Bone mets stable. Liver and thoracic mets decreased significantly in size. So excited!!!! Finally good news!
Babs
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wonderful news Babs!! 'Significantly' is such a beautiful word. Celebrate well..
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So happy for you Babs , wonderful news yayyyyy, happy dance for you
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Babs, very good to hear you had good news
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yay babs
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Diana and babs, Both such great news! That makes my day too! My liver enzymes took another dip this round so am slowly inching closer to normal, now in the low 100 range and my CA-15 also went down, which also made my day. Still waiting on the CA-29. Next scan is mid-March so trying not to hold my breath too long but hoping that Faslodex is working overtime....
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Babs and Artist
Great news. I feel safer in my body then I did 5 months ago too. Hoping a couple more cycles of gemzar can get me off this weekly chemo.
These drugs are very powerful. I have always believed in treatment since initial Dx in 2002. Now there is new stuff. Only best wishes to all. Artist glad the numbers are coming down. Remember this stuff has its own process. And it does what it does. We just have to roll with it ; keep ourselves as healthy as we can and keep the faith. One thing I have learned with this mets stuff is that things can go South and then turn around. And visa versa.I don't get too happy or too scared. I work at staying in the middle and deal with what comes up.
Hugs to all
Not today cancer. Nope.
Diana
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Thanks for all the hi fives- I feel like you're here with me!
Artisthea-with your liver enzymes and TM's down I'm seeing and hoping for good scans in March !!!!
Babs
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celebrated another birthday today. Mixed bag as two people in the family are ill. But so thankful I am alive to say I'm another year older.
May we all see many more birthdays
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Happy birthday, Left! Hope you had a great day and enjoyed the sunshine.
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Many happy returns leftfoot
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Thanks Diana and babs. I am like you Diana, I don't get too happy as i know how things can turn in a heartbeat. Unfortunately I still freak out for a day when not great results come back. I get pretty scared and I haven't even had anything that dramatic happen yet.......Then I hop on here and try to bolster up my spirits and it helps. I hope as time goes on I will deal better. Hey, Happiest Birthday ever Leftfoot! Celebrate every single one like a Rock Star!
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Artist,
Good news , you are getting there hopefully in march you will get even better news. We will both wait for results in march as i will wait for the results of my scan also .
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Hanging in there with you Woody! Mine is on St. Patrick's day and I plan on dressing the part as I am 75% Irish! I'll be thinking of you with positive vibes!
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Leftffoot-happy Birthday and many more-god willing!
Babs -
Happy birthday left!!
And congrats too all these good numbers!! I am so happy to see some good news!! I hope everyone is having a great day and we can keep those good vibes rolling on in!!'
Alissa
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Happy belated Birthday, leftfootforward. I think we have all grown to appreciate another birthday, spring, fall, etc. I am happy to see a new spring beginning to pop out for now.
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leftfoot, happy birthday ! And many many more with good numbers and wonderful results. Sending you my best wishes and good vibes. May all your days be filled with joy and sunshine
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the mystery of my bone progression, or not, deepens! Although some spots showed up on the CT scan, nothing appears on the bone scan or the X-Ray, not even any arthritis. Spoke to one of the junior oncos today who said that chemo can causeCT scans to be misleading and after all, it's only a set of grainy black and white images. (A bit cynical for a junior doctor I reckon). So I'm labelled a bit of a puzzle and continuing on gem carbo for now. Any insights from you well informed ladies appreciated!
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Babs...wonderful news to hear & I'm happy to share in the high fives!!! Artist...woohoo for numbers falling & hoping for you & Woody to experience great scan news too!! Leftfoot...Happy Birthday to you! I'll bet your little darlings had a great celebration for you. I'm sorry there are family members not doing well...prayers for them.
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Thanks Ronnie, I think I can start the scanxiety stress machine in about 10-11 days......
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I'm having crummy hip pain...can't figure out why...of course the mind starts wondering into that dark area. My neck's been cracking and gp said maybe osteoarthritis but is sending me to PT. One of my childhood friends, her dad was our elem principal, passed of mbc last week. We reconnected after our first dx & were dx mets at the same time, 2012. Hers started in bones, then liver & after 13 tx changes (so many) in 3 years, she's gone. I spoke to her (and her 94 yr old mom!), a month before & she'd just gone on hospice. So fast :-(. Yesterday, I visited a former co-worker, still a school secretary, who'll be having a dbl mst Monday. She's triple neg. I have a feeling I may have sympathetic pain, right????? What I want is a scan but I'm sure my onc will say no. I had one Aug 6th & don't see him til April. Thanks for letting me vent..XO
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Ronniekay, i am sorry for your loss. Vent away any time you like. About your pain, it does not have to be the dark place. Last month i got a pain on my rib and it is still here, my onc requested an xray , it showed a tiny fracture on the lateral side along the rib. I have been coughing a lot lately because of the heart meds side effects. My PET is not till end of March . So maybe your pain in not related in any way to cancer. My neck cracks all the time. Do notlet your mind wander.
). My hips kill me from time to time , chemo has its downside you know? And you have done a lot of that, it weakens bones. ((HUGS) -
hugs Ronnie. I am sorry for your loss. I understand your worry about your hip pain. I have forgotten a few things lately and made simple mistakes. My mind immediately goes to my brain mets are back. I just had a clear MRI but when I do stupid things I worry. Cancer is sneaky that way. I hope that your worry goes away.
Hugs
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Ronnie
(((Hugs))). Sorry for your loss. MBC raises its ugly head and the anxiety begins along with the sadness and unpredictability.
Even though my liver responded to gemzar I did have progression in bones. After talking to RO we are just going yo keep an eye on it ( small spots) rather then go toxic rads. Staying on gemzar for liver and kidneys may help. I try to avoid too much toxic TX except for liver ad belly mets. waiting for scans is the worst.
The cancer pathology can change anytime it wants to. Maybe more difficult to TX but maybe less difficult as we go through this stuff. You never know and that's the hard part for me. I find myself constantly assessing my body; pain and performance.
Anyway. Losses of friends and people we know give us reality of what we are dealing with on a daily basis. Hang in there. Remember scans and blood work gather information for Tx.
Hang in
Diana
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RonnieKay, thank you for venting. Sometimes I think I need to hear others fears as much as I do their incredible courage and attitudes of hope...allows me to be human myself. And I resonate with your feelings just as so many others do. I was never one to worry about little aches and pains. I'm not sure I believed anything bad could happen to me, as if that were somehow something just for the movies or other people's lives. Cancer's changed that for sure. Yesterday I found myself measuring my waistline again. I get a little more bloated and a little panic sets in. Couldn't wait to go to bed and wake up thinner again (I did). And, for some reason my hips and legs are aching much longer than usual after Neulasta so my mind goes to other explanations...what if? But, in the end I push it aside.
I am sorry to hear of your loss. I am trip neg and lost my aunt to the same 6 months after my stage 1a dx and 6 months before my stage 4 dx. She lived a year after dx so you can guess what I was thinking as far as my fate goes. Don't feel the same now largely because of the posts of many in these forums. Praying for your peace of mind!
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Ronnie- so sorry for your loss. We're all there giving you a hug!
Please understand that you can always rant here-it's our safe place and nobody gets it like we do!
Babs
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Hello, I've come to introduce myself and support and be supported by those in the same situation as me. My husband and I just got back from my onc and the liver biopsy done Wednesday was positive for me static cancer.
All of you here are such fighters. I know that sometimes we get down, but it seems like you all rally. I feel like I got sucker punched. I just wasn't expecting him to say it was positive. My onc says I have a lot of options because I'm young (42), and he's going to reach out to a breast cancer expert in Seattle and my old onc from MD Anderson.
Take care everyone, Erica
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Sucker punched is right, Erica! I'm 38 and in your boat with the added thrill of being triple negative. Still, treatment options only get better and better and there is much life yet to be lived. Thinking of you as you settle in to this new reality. It does get easier to face with time and support and you have oodles of support here!
Missy
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Tips for pain when your liver is pressing against your ribs? Hurts to breathe or move much. MO gave me fentanyl patches but my liver can't metabolize them very well. I'm loopy for too long
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Hi Dancing Veggie,
Don't have a lot of tips, but have been doing the liver pain thing for over a year.
I'm currently under hospice care and take as little drugs as possible. Am using tramadol, lyrica and drops of morphine under my tongue for pain. Also some homeopathic medications prescribed to match my pain picture.
I pay lots of attention to what, when and how much I eat, since my liver presses against my stomach.
Also, shortness of breath gets worse with full belly, liver swelling and also the ascites (fluid in abdomen). So, I try to time activity around eating too. Or eating around activity.
A couple of months on low dose steroids helped last year, but that made everything but the pain icky.
See if you can get palliative care in addition to your cancer treatment. They really know their pain meds and are often more helpful than oncologists in tweaking prescriptions and treatments to get relief.
Sending healing light from California, Stephanie
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ronnieKay, I too question every little new pain. The other day I was having a lot of achiness in my hip that radiated down my leg. I finally linked the fact that I had my Faslodex shots and sat around in my work chair too long the next day. Just did not connect the two as it had never happened before. I'm so sorry about your friend. The worst part of this disease is the unknown, what will happen when. It drives me nearly insane at times. Unfortunately, all we can do is take it one day at a time and try to find the good piece of everyday. Welcome Erica, you will find so much comfort and support here!
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One day at a time is right. I imagine after the shock wears off a little, it will be easier.
I'm sorry so many of you are in pain. I haven't experienced that yet.
Thank you for the warm welcome
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Hello Erica,
I am sorry you are here. It is always shocking and scary to find ourselves in a place in which we don't want to be. The unknown is always scary. Itjust takes time for the info to sink in. Once it does and you talk to your onc , you will get on board. Fortunately, many options are available nowadays. You and your treating team will choose what is best for you. Do not worry as you will gradually adjust to the situation and will be able to resume your life with quality.
The ladies here are wonderful , full of life and supportive. So feel free anytime to drop and ask what you want.
I wish you peace of mind and a long life,we will be all here for you to cheer you up.
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Thank you, Woodylb, The treatment doesn't seem as extreme as the first time around. We are waiting for a PET scan next week and to get the results of the HER2 status before we decide, so, it's another waiting game.
Thank you for reaching out, I feel so guilty talking to my husband about it, he's stressed enough.
Hugs,
Erica
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Erica, what you say about stressing your husband also reminds me of my early months. I remember feeling similar to you. It was a while before we actually ended up talking about it, other than in very practical ways. He was so quiet and didn't really express how he felt and I hated the silence but also feared an emotional assessment of the situation. Once we finally did though, we both felt so much better.
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Erica,
Welcome and I'm sorry you have to be here but, you're in the best hands possible. The women here are a great source of information and support. I don't know how I could have dealt with everything if I didn't have them!
Babs
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Ugh. Blood work back from yesterday's infusion. All 3 tumor markers up. I hate this disease. Hopefully nothing but ugh
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I'm sorry Leftfoot, I know how anxiety producing that is. Are your TM's normally a good indicator? If you don't mind me asking when is your next scan or what is next to find out what is going on? Hang in there and try not to project too many scenarios. It is what it is and stressing out won't help. Thinking of you and hope things resolve quickly.
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Ugh, sorry to hear that Left. Sending positive thoughts your way.
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thanks. I try not too.
My tumor markers have never been high. actually they rarely are out of the normal range. Two are actually in the normal range but one went from less than.5 up to 2 g highest I've ever been) and oneissosorcis at 23 and that one has always been around 12. Last one is at 53. That one doesn't concern me. It's more that the other two jumped so much. They've been so steady for two years.
But my last scans were in January and were clean. But in my world things change fast. I get scanned every 3 months so if things change its always caught early.
I am sure I'm fine but it's unsettling at best
Thanks
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left , sorry for your tms wnd ughhh it is. If your scan is far from now maybe you should ask to do ot immediately. But like artist said do not stress before you know what is really going on. I hope it is something of no consequence which could be solved promplty. Praying for you.
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unsettling is right Leftfoot. Everything about our lives with this disease is unsettling but hopefully it's just a blip and your last scans showed the true picture. Had my bloods drawn just now so will get news on that tomorrow. Have felt really tired and a bit nauseous all week so thinking that something is going on. Yuck and ug
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ok so I just read that menstration/ovarian cysts can elevate levels. Lucky me I stil get my period and had it the week before. So I am going to say the results are due to that . Staying positive.
Hugs and hopefully good results to you isy
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Great to hear! I do hate all these little things that set off our worries but how can we help ourselves but go there. My lower legs are covered with tiny red dots. I'm guessing my platelets are still getting kicked down by gemzar even after the reduction so this is disappointing.
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LF-sorry about your TM's. Did you Dr. order scans now? Try not to stress out-easier said than done! We're all here for you!
Babs -
It must be tm and blood test time for all of us! Went to onc yesterday, my bloodwork was low, but enough to restart Ibrance, should get tm test results today, and now a PET is scheduled for tomorrow, a whole week of anxiety! My 1st pet determined the stage 4, the next one showed improvement, this will be the 3rd one. Hoping for good results and happy vibes for all of us!!
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Oh leftfoot, hearing that TMs are up must be very scary. How are you feeling (physically) and when is your next scan?
My experience has been similar to kaayborg's, in that my husband and I feel better now that we can talk about it. The social workers at my cancer center, after much conversation, convinced us that trying to protect each other would keep us apart emotionally, while talking would help us stay close.
Woody and artist, I'll be wearin' the green to my next scan also. "I am not having scanxiety, I am not having scanxiety, I am not having scanxiety..."
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Mama2twins, I'm just feeling that your next PET will show continued improvement!
Isy, try to remain neutral. Your results are not back and you don't know that anything is going on. I am trying to do this myself, since every twinge right now tries to scare me. Leftfoot, I know. Even with TMs in normal range, a few points up worries me, even though it does not worry my onc.
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Isy, i hope your tms are ok. Maybe the tiredness and nausea is related to stress. I think all of us feel tired and nauseated from time to time. Before my last scan i felt the same and bloated and i expected my PET to show something , it did not. I hope all is well , please keep us updated.
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Mama2, I hope your third scan will show more improvement, you are in my prayers.
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Shetland, No scanxiety , no scanxiety , no scanxiey , just scan symptoms
Praying for all of us
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Woody...scan "symptoms"...now that's a new one :-) Thanks for the support..oh jeez, what-truly-would we do without each other!!! My mind went back to first dx, too, when I would only cry in the shower, not wanting DH to worry. I typed that in my Sept 09 Chemo Sisters blog. When another sister said she did the same, I knew I was in safe arms...still wrapped in understanding! I had pt on my neck...really messed up muscles...not a tumor after all...ugh. I've always been aware of what my body needs to work well...now, it's such a Corp shoot for all of us. BC makes heightened awareness a nasty word!
Leftfoot...I'm so relieved there may (has to!) be an "acceptable!" explanation of raised TMs...and all my young sisters...I'm totally po'ed that you have to deal with periods & bc...or bc & periods!!! My TMs are right on for me..and my C spreads fast & furious like yours, Left, so I would get the concern w/January being "a long while ago"....but then my prozac kicks in & says, "it's really only 30+days!" So...hoping that stupid cycle is messing w/numbers. My blood draw yesterday showed low neutrophils..outta nowhere...fine white & red...just a blip that's weird.
Kaay...Don't know how many lower doses you've had, but is it possible the spots are higher dose reaction & just "clearing out?" Hoping they aren't itchy or painful.
So many scans, tests this month...I'm also thinking, praying, hoping for good results for all. And I tell myself if they aren't the best, we'll just do what we need to do...cause that's what we do. Off to the last bb game for GS...XOXO
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Shetland, I'm trying to chant the same mantra, "no scanxiety" but have some some stabbing rib pains in the last week or so concerning me. (OK freaking me out) Had a big stitch this morning and it sent me into a spiral. (So much for my advice leftfoot! Easy to say when it's not us right?) Still two weeks to go for "green day" scans. Think I just need a big fat hike somewhere with some fresh air to shake this off but the bad weather is kicking in and we are supposed to get a boatload of snow by Sunday...I too try to limit how much I dump on my DH. I think a part of me feels afraid that he will get war weary. Or I just feel so bad turning his world upside down with mine. I should know better as he says I AM his world. But never the less......It is sort of like Mommy guilt, always trying to protect the kids. Ronniekay, I envy you going to BB with GS! Such a cute pic of you two! Thanks for letting me vent gals. Feeling better already. Thinking of you all...
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Wanted to share some more good news with my wonderful BC sisters. My CA 15-3 went down from 234 to 128. Last month they went down about 20 points-this is just so amazing.
I am hoping for similar news for all of my sisters here. And if not, we'll all be there for you as you've all been there for me.
Babs
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Support is right, I just don't know what I would have done without you guys on here and you are all so amazinglyknowledgeable. Over here in Oz the docs don't seem to like to tell us too much, and whilst we do get some choices in our care it's mostly taken out of our hands. Perhaps they feel we're too delicate to make decisions! So the outcome of my tests is that my liver is "slightly irritated" - see, not much technical info there. My liver function was spot on and blood counts border line so had chemo today. Thinking the "irritation" and nausea may be down to nsome new painkillers (naproxene) so going to try something else.
Was nice to see a new junior doc today, apart from the unsettling fact that she looked about 12, was full of enthusiasm and new knowledge. She felt my liver was less lumpy and softer than last week so I'm taking that with me as a positive and put the "irritation" (I presume that means elevated enzymes) at the back of my mind.
Hang on in there everyone and have a great weekend!!
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fantastic news babs!
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Yes, great news babs! And you as well Isy! It is very annoying to me when the docs treat you like a kid.....I have a right to know EVERYTHING!!!
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Great news babs , i hope they keep dropping.
Isy , anti-inflamatory drugs causes enzymes to go up , so yayy you liver feels better on touch.
And Artist , the stabing pain may mean nothing , i have had it for a while and nothing is showing on scan ultrasound or xray.
All of us let's get ready for our scans , tests and so on and hope for the best, like Ronnie said that's what we do. Prayers to all of us.
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Thanks for all the kind words guys!!
Great news babs!!
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Hey ladies, wow, lots of scans, tests and activities. Great news, babs. Sending my best wishes to all of you. I agree about scan "symptoms", I can't tell you how many times over the years I've developed pains leading up to a scan that I was convinced were something new, only to be proven wrong (thankfully) and the pain would disappear as fast as it started. It goes to show how powerful our brains are and a good reminder that not all pain is cancer.
On a different subject, I learned a little trick from my oncologist yesterday and thought I would share if it helps anyone now or in the future. She prescribed the drug Reglan to help with stomach emptying. My liver mets are so huge these days, they push on my stomach and I can barely eat. I took a dose of Reglan last night with dinner and it seemed to help a little.
I am making an appointment with Palliative Care for next week, so I'll let you know what I learn.
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Hi Nancy H.,
I too have large liver mets causing pain and pushing on my stomach. Together with the ascites this leads to much discomfort and also nausea.
Reglan has helped, but a combination "cocktail" of split doses of reglan and zofran and addition of the homeopathic remedy nux vomica has really eased the nausea and hiccuping that was making me walk like a drunken sailor on a pitching boat. (the word root naus comes from the Greek word for sea).
Sending a warm hug and healing wishes for all here, Stephanie
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hi all. Good to see good news on this board, congrats. Have 6 more rounds to go. Last week liver enzymes were 40 and 50, this week went to 86. Ugh. Dr does not appear worried said they flucuate. Also have had ache in liver side by ribs off and on. Sigh..
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Thanks Woody and Nancy, I value your experiences very much and that helps me relax a lot! Nancy and Stephanie, I wish there was a way to take all these super helpful tips and tuck them into a folder on here somewhere for future reference. Nancy, I am glad you found something that helped a little and hope palliative care will add even more tricks to your arsenal. Ronnie IS right Woodie. Scan away I'm ready and hoping for the best. Take care all!
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Thank you all for your continued support!!!
Babs
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Nancyh , i hope palliative care succeeds in giving you more comfort and rest from large liever mets. My prayers are with you for a better quality of life.
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Hello,
I am new to the liver mets site. I have been over in the Ibrance site and just wanted to come over here to show support and also to receive support. I was diagnosed with bone mets in 2013 and liver mets about 6 months ago. After liver mets were discovered, we tried Afinitor/aromosin and although my first scan after that was clear, my TM's and liver enzymes continued to rise. Then about a month ago a liver MRI showed lots of growth on my liver so we changed meds to Ibrance/faslodex. I have been on this combo for a little over a week. I am tolerating it pretty well. I have my first blood draw since being on this med next Tuesday. I am a bit scared because my numbers have been really high. I have read some peoples numbers on here and also on the Ibrance site and mine just seem scarey...Last blood work showed AST 172,,,ALT 143.....LDH 778....CEA 567.......CA27-29 11,907 and CA15-3 1654. Anyone else have scary high numbers like this before?
My cancer has always behaved strangely. I was diagnosed at 35, I am now 40. In 2011 I had 6 tumors in one breast. In 2013 I had innumerable tumors in my bones, I had my ovaries removed and there were cancer cells in my ovaries. I am not genetically positive so it is strange for it to go to my ovaries. Then in September 2015 I had innumerable tumors in my liver. By December I had clear scans..No tumors anywhere...but numbers continued to rise. Then in February innumerable tumors again in the liver.
I am just scared. I have two young children and I pray that the new meds are doing something. I do have some liver pain. Nothing too terrible just an ache every so often. I try to stay positive, and I pray a lot. I just need these scary numbers to come down and for the tumors to stay at bay for a bit.
Just trying to buy as much time as I can.
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Sonya, i am really sorry you are here. I am not familiar with ibrance /faslodex but i do know for some it is working very well. Your numbers are intimidating , true, but it does not mean this treatment will not work for you. One week is very short to tell if it is working or not, it may even raise your numbers a little more. This happens sometimes when you start a new treatment. But if it is working it will bring back down. So have faith and a little patience and give it time to work.
I know you are axious and scared but it is the only way to tell if a treamtent is working is to wait at least three months , during which you will be monitored and your doctors can tell if they should stop or continue.
I, like you run towards praying, prayers are very helpful and give us hope. So i will add my prayers to yours and wish you good response . You are young and it is very hard when you have young children , i hope you have a long time with them and that your next blood work show promise. God be with you and all of us.
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Woodylb. Thank you for the prayers. I do expect my numbers to go up the first few blood tests. That is what they did with my last chemo pill. It is scary to watch them go up, but I was told that it's normal in the first few months. What isn't normal is them doubling and trippling 6 months after the start of treatment and unfortunately that's what happened with afinitor. I really pray that doesn't happen again. I need something to work for an extended amount of time. I haven't had that for a long time. Arimidex worked for 2 years and since then nothing has really worked for any amount of time. It was really strange when I was NED one PET scan and then that went away really fast. just really praying this works for more than just a few months.
What meds is everyone on to keep the liver mets away? What is working for people?
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Hi Sonya, I am so sorry for your situation. I just found out Friday that my PET scan showed many liver tumors, after being nearly NED six months ago. My oncologist is having a liver biopsy done, to see if I've changed from ER+, to ER- or Hr2+. This might be something to have checked to see if you are still being treated properly. You don't mention that you have had IV chemo. Abraxane worked really well to kick my liver tumors back. Have you had any DNA testing done, to see what treatments will work the best on your tumor type? I'm waiting right now, to hear what my next treatment will be. I'm feeling scared too, you're not alone.
I wish you great success with the new med. Prayers to you and your family.
Best, Melani
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Sonya,
I understand your anguish and frustration. When markers and tests go up during treatments , like it did on affinitor , it would be mainly because the treatment has failed. When people are NED it is usually after six months it the tumors come back during this period then it would not be NED.
You did not mention what type of cancer you have, is it IDC or ILC?
Maybe you should request a new biopsy to see if your cancer have mutated and this will help more in defining your treatment.
Unfortunately, in cancer there is no trend in treatment, it does not work this way. Each person is different in response and it depends on your type of cancer and subtype, grade, location and a lot of other issues. It is up to your doctor to decide what would be best suited for you and your needs. Ibrance is the latest meds used for ER+ patients. I truly wish you a good response to it.
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Sonya, I am trip neg with only liver mets and have done gemzar/carboplatin for almost 8 months. It has worked very well for me but is really knocking my platelets so I'm not sure how much longer it will be an effective option given further need to reduce and delay tx. I also wanted to mention to you the "ladies in their 30s" thread which is getting more activity lately. Oh, how I do understand your fears! I have three young children. I want to see them grown!!!!! Thinking of you.
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Ladies,
You are all so wonderful and supportive, thank you. I'm having a PET on Wednesday to make sure it hasn't spread anywhere else. I see my onc on Friday and we will go over the PET and my TM's, and my HER2 status. I am menstruating after having nothing since December 2014! I wonder if that is a sign that the Tamoxifen stopped working.
Sonya, I'm sorry about your TM's. They are elevated, but like these experienced ladies say, it doesn't mean the next treatment won't work.
Kaayborg, you are right. It's hard to try to manage someone else's stress. I think we are trying to stay away from the what if's and wait until after my appointment Friday to really discuss options and how we feel. I hate the holding pattern, it's so stressful.
Thinking of and praying for all of you,
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Sonya
My CA 27-29 was over 14000, yes that's three 0's!! When I started treatment, the next test they had halved and they continue to come down, although nowhere near 'normal', whatever that is. My onc is not worried about figures as long as they show a downward trend over time. But as Woody says we are all completely different in what these figures actually mean for us and how we respond to treatment. The uncertainty and unpredictability of life with stage 4 is trying to say the least.
Kaayborg I just had a six week break from gem/carbo and my platelets and WBCs completely recovered. I think it's good to give the immune system a chance to gain strength again for whatever we may have to face in the future. Although the LFTs rose a little in that time the tumours remained stable so I wouldn't be phased about taking regular breaks as long as it keeps working for me. The chemo remains in your system for a time anyway so will keep working. During the break I was able to have a fantastic family holiday, memories of which have really kept me going and elevated my spirits. It felt good to be off for the treatment treadmill and feel almost normal for once!!
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Hi Sony,
Since I was dx with liver mets I've been on 3 different drugs-the first Ibrance/Femara- which worked for about 7 dos, next a clinical study of GDC 0810 which really didn't work and I was on it for about 2 mos.I'm now on Xeloda which is working for me. As you'll see on here, different things work for different people and until you try a drug you won't know if it works, I wish it was simpler but unfortunately it's not. Hoping the Ibrance works for you for a long time!
Babs
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Isy, I learn something new every day. A six week break! If someone had asked me before hearing this from you, I would have surely thought being 6 weeks without treatment would do me in. This relaxes my worries quite a bit. So if my onc tomorrow goes with the two week break, I'll not sweat it.
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Sonya, I was on Femeara/Ibrance combo for 3 months and it worked in reducing the tumors in my liver but my enzymes continued to climb fast. AST and ALT were like 550 and 750. So I quit that combo and my numbers slowly went down. Then I switched to Faslodex 3 months ago. At first my numbers went up again for a week but now they have settled down finally. I get a little liver pain too, just little burning stabbing pains, nothing actually that I would even call pain just slightly unsettling. I get my first scan since starting Faslodex and will let you know how the scan goes. Praying it holds me for a very long time.....Of course you are scared! I think most of us are, maybe just in different degrees. I try to stay positive and not jump to conclusions because getting upset makes me feel worse and helps nothing. I admit that some days that is easier said than done. I hope and pray that Xeloda works for you for a very long time. Hang in there and keep coming back to let us know how you are doing. It is immensely helpful to read about other women going through the same CRAP-OLA!
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I have a question for you "experienced" ladies. My MO said my treatment may be as simple as switching from Tamoxifen to an aromatase inhibitor. Is that possible for it to be that simple?
How many of you have a port? I had mine removed as soon as possible and now I regret it, but I was very hopeful at the time.
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I say, sure, it is possible that it could be that simple. If it works, it works! I have a port. It was a necessity as I ran out of happy veins. I did not want it but it turned out to make treatments a breeze. On me, it is absolutely hideous as I am a scrawny chicken and every fine ridge of it protrudes. I call it my robotic mouse. Now the tail is like a thermometer for low platelets as it bruises my skin. Still, I should be beyond vanity at this point (SHOULD be). I am currently on a wild bathing suit hunt to cover it up but still, when I got it, I felt so close to death I swore I'd be so happy to show it off on the beach a year later so now I'm back to that I think. This is more than you need to know...ramble, ramble. All in all, ports are awesome!!!! I don't miss those IVs at all!
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Melani,, I am so sorry that your dance with NED is on pause for the moment. I hate when that happens. It is such a disappointment. I got a year of NED when I only had bone mets and when NED was done it was a punch in the gut!. I had a liver biopsy back in September when liver mets were first discovered. Still ER/PR+ and HER2-. Do you think I need another biopsy? Maybe I do because all of the liver and bone mets went away on Decembers Pet scan, but liver mets came back on February's liver MRI. Wonder if that means that the status has changed. I will talk to my dr about that.
My dr is saving IV chemo until we run through all of the oral ones. He wants me to have quality of life, so he is starting with the things most easily tolerated. I did chemo 4 1/2 years ago when I was first diagnosed and I had a really hard time with it.
I had a molecular study done on my liver biopsy. It showed that I have a genetic mutation which makes me become immune to hormone therapy after awhile. I had a good run on Arimdex(almost 2 years)...but since then I have failed everything rather quickly. He thinks that is why I became stage 4...because tomoxifen failed me after only being on it one year. I haven't had any other DNA testing done besides that and also to see if I was genetically positive, which I am not. What other DNA testing is there? I would love to have that done.
Thank you for all of the great info. I wish you the best of luck on your new treatment and I hope you dance with NED again very soon.
Woodylb, I know that while on Afinitor, I may have used the word NED too soon. I had only been on afinitor for 3 months at the time. I got overly excited when the radiologist brought my husband and I into a room and said, I see no evidence of disease in your bones and liver. It was amazing news, but as my markers continued to climb, I knew that my cancer was still looming and waiting for a place to land and I was right. It landed right back in my liver, and this time worse than the last time.
I have IDC...but I seem to remember my initial report saying that I have IDC with lobular features. I have no clue what that means.
Do you know how often you are suppose to get a liver biopsy? UGG, I would hate to go through that again.
Praying that Ibrance is working and the waiting is hard. Now knowing I have to wait a full 3 months to see if it is working means I won't know till the end of May.
Thank you for all of your good advice : )
Kaayborg, I am so happy to hear that your combo is working. I love to hear when things are actually working for people : ) I am sorry that it is knocking your platelets down. I had a friend who was on Abraxane/carboplatin and she had the same problem. She has a blood transfusion and she felt so much better after that.
I will check out the "ladies in their 30's" thread. I just turned the big 4 0...will I still be allowed..LOL!
It is so hard when you have young children. Mine aren't so young anymore ( 10 and 8) but me being sick is all my 8 year old knows of me. She was so young when I was diagnosed. Both of my kids have a really hard time with it. When I keep them informed about what is going on it seems to ease their fears. I have so much guilt for what they have seen me go through. No child should have to fear their mother dying. My 10 year old once said to me that she was afraid that she was going to come home from school and I was going to be dead. It broke my heart. I so badly want another 10 years so I can see them both off to college. I pray every day for a miracle. I know it is probably not in the cards for me, but still miracles happen every day.
I wish you luck on your journey. Thank you for chatting with me.
Luvmyfam, I pray that your PET shows that your cancer hasn't spread anywhere else! Hoping we all find treatments that give us years!
Isy, What treatment cut your CA 27-29 in half? I think I have seen you on the Ibrance thread, so I am hoping it was that. Having your CA 27-29 with three 0's is very scary. When I first saw mine, I thought it was a mistake! Praying to cut mine in half. Will find out soon enough.
You are right, the uncertainty and unpredictability can drive us NUTS! It is such a roller coaster. I would just love to be NED for awhile. I just want a bit of a break from this crazy roller coaster.
Babs, I am so glad that you are finally on something that works. I pray it works for you for a long time! : )
Xeloda is my next step when Ibrance fails me(I almost typed if instead of when) Guess they all fail us at some point. Just really hoping to find something that gives me a big break!
Artistatheart, I am sorry that you had to go off of your combo. Hopefully the Faslodex is doing its job for you! Praying your scan shows reduced tumors or none at all!
The liver pain is haunting. It is just a constant reminder that we are sick. I hate that, because I look totally normal so it is hard to grasp that I am actually really sick.
Thank you ladies so much for all of your advice and words of encouragement. The support here is amazing! I pray that we all find treatments that work for us and give us breaks off of this roller coaster once in a while.
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Hi Luvmyfarm,
Good to meet you!
I live on a farm too, though my landladies are the farmers and I'm their happy co-inhabitant.
You asked about switching from Tamoxifen to an AI and whether treatment could be that simple.
It can and often is for post-menopausal women, but you mentioned that you're menstruating again.
You may also be looking at Lupron injections or removal of your ovaries to end your periods and become post-menopausal.
Sometimes chemotherapy is given for aggressive hormone positive metastatic breast cancer to control it, then the patient is switched to anti-hormonals (typically AIs or Faslodex, sometimes in combination with ibrance or afinitor).
You're at the beginning of a new learning curve, so don't get too far ahead of yourself.
I used to describe mets as a marathon in contrast to earlier stage cancer as a sprint.
Now, I describe mets as an obstacle course that we're continuously developing new skills and strategies to master in our quest for quality and length of life.
May you be well as you enter this new stage, dear Luvmyfarm.
Sending a big hug from a California farm, Stephanie
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Kaayborg, I've also resisted getting a port - I think something at the back of my mind was not wanting to accept that this was a permanent situation, even though my head knows it is. However, after having all the nurses try to find a vein last week, even the queen of the canulas so called had trouble. In the end it had to go in my hand which is so painful! So I'm off to get my port put in next week. Was the procedure painful? I'm also a skinny Minnie so no doubt my mouse will be on show too. It will be good for getting treatments and scans. However because I get my blood tests done close to home by a different provider they are not allowed to touch the port as it is equipment belonging to a different company. Can you believe it?
Hope the bathing suit hunt was successful!
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Sonyarizzo, I was initially on Abraxane when my cancer markers went right down, however my tumours continued to grow alarmingly so you can see why some docs don't really take much notice of cancer markers. My onc didn't seem that bothered they were so high so neither was I, we were just happy to see them come down. I came off Abraxane because of this but also because it was causing me really bad neuropathy in my fingers. The doc said it was very unusual for it to come on so quickly and was worried it may become permanent so like your doc, he is most concerned with QOL so took me off it. The neuropathy went away as quickly as it started. Since then I've been on the gem/carbo combo which is working very well for me and I'm tolerating well. Don't worry too much If you do have to go back to IV chemo. i also had a really hard time first time round but find these stage 4 chemos a lot easier to tolerate and there are so many to try when one stops working. You still have a lot of weapons in your arsenal and the motivation of being there for your kids will keep you going!
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Isy, you are gonna love having a port with gem/carbo! Say good-bye to feeling even the slightest burn with whichever one of them burns...can't remember now. The procedure was not painful. I do remember being a little peeved that I could feel it under my skin and worried that it would always be that way but whatever I felt completely faded after a few days. I don't know it's there, except for if I look at it.
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kaayborg, I don't think we ever get beyond wanting to look good to ourselves and others. It just makes everything seem more normal and easier to mingle in the general public without being self conscious. Hunting for bathing suits is always difficult no matter what! Hope you had some good luck! Thanks Sonya! I too feel very well, so without the stupid liver twinge reminder I might otherwise stay in total denial. Welcome LuvmyFam! I hope you get a lot of good info and comforting words here! Isy, I can't believe that.....As if it isn't hard enough. Be well all!
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i have been having some achiness near my ribs, wondering if it's my liver or gallbladder. Dr says might be GB or muscular. That was 2 weeks ago. I get my treatment tomorrow and will ask him again. Last week enzymes were slightly elevated, he didn't seem worried. Don't they flucuate?
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Lvin,
I have also pain on my right rib , i have had it for a while it comes and goes but not major. I had an xray and nothing showed and not on scan. My onc think it is sclerotic since i had a spot there and it has healed. I also cough a lot due to smoking this could be my reason. Liver enzymes can fluctuate specially on some medication. If your doc does not seem worried neither should you. I hope it is nothing.
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Lvin, it is frustrating with in that area as it can be hard to know what it is from. And some fluctuations in counts is normal. I don't have any answers. It would be so much easier if we had a crystal ball into what is going on in our bodies!
I have posted on other strings this week that I had a recent, very fast, significant increase in my liver mets. Since my last scan (3 months), some spots that were micro sized or nonexistent have now converted into a 6cm tumor, among many others, in my right lobe, and my left lobe is now described as being comprised of nearly all metastatic tissue. My bone mets are fine and inactive and lymph nodes are NED. It is so scary and frustrating. I have been waiting all week to start Xeloda but administrative delays have the prescription still kicking around. I have been on the phone every day with various people from the doctor's office/insurance co/specialty pharmacy/second specialty pharmacy that processes the prior approvals for my oncologist. The whole process is such a joke. Now I am going out of town tomorrow. I am going to try to have the meds shipped to the hotel but don't know if that is realistic or wise (they are not available for pickup at a retail pharmacy). Anyway, despite being very scared and freaked out that my left lobe has been completely taken over by cancer in a short time span, the weird thing is that I feel great. No loss of appetite, no new fatigue/energy loss. I feel awesome and totally "healthy" . . . but like a ticking time bomb at the same time. I will feel much more at ease once I start the Xeloda. -
Jfl,
I understand your anguish right now, as I have been diagnosed with significant liver progression in both lobes. It is crazy how fast the tumors grow! Like you, I will be glad when I can get back on treatment. My oncologist won't make that decision, until the results of a liver biopsy are in.
I am holding all of us with liver mets up in healing light.
Best, Melanie
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JFL, i am sorry for your progression on the left lobe, it is scary when progression is so fast and frustrating when there are meds and because of bureaucracy and procedures they are delayed disregarding the patient's urgency. I hope you get to have Xeloda fast and hoping it will get you back on track. Glad you are feeling healthy and i hope you stay as healthy as you feel.
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JFL, that is so scary. I can't believe either how they can hold up meds that you need right now. I hope you get that Xeloda soon and it knocks those mets down quick! Like Woody said, I am glad you feel pretty well and hope that is a sign that things will settle down. I too get little stabbing pains in my right side and am feeling extremely anxious about scans next Thursday, especially when I read about people with rapid progression. Lvn, my enzymes have bounced all over the place mostly from Ibrance I believe which I had to stop.
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JFL, wow! All of that is just crazy...CRAZY! Makes me quite mad so I can only imagine how you feel. Those meds are gonna be at your hotel and Xeloda is gonna smash those tumors back to nothing again! Until then, peace to you. And, if it helps at all, I didn't notice a problem at all until I had 2 tumors 9 cm and 10 cm plus lots and lots of other smaller ones in both lobes. It's amazing what our bodies can handle and still feel so "healthy." So hoping you continue to feel well in spite of all the craziness inside.
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JFL. So sorry about your liver progression and I can't believe the insurance companies!! Do you think getting your MOs office involved would help? That's what I had to do to get my Ibrance. I hope you get your Xeloda soon and that it works for you as it has for me. So happy you're feeling well despite everything!!! Enjoy your trip!!
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Hi all!
i am new to this discussion and scared to death, was diagnosed 1 month ago with stage 4 TNBC with lungs, liver and bone mets after 2 years of being cancer free. i was 26 when diagnosed first with stage 2A TNBC and now a week before my 29th birthday with mets. i had not symptoms at all except for a chest infection that went away after antibiotics. i am so scared and thinking that my days are numbered. need help.
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MaryK,
I am so sorry for your cancer coming back , soecially when you are so young and your life is still ahead of you. We are all never prepared for this knd of news and it is very scary . I cannot tell you not to be scared because it is unrealistic, but i will tell not to lose hope and have faith in your doctors and in yourself. I know you are triple negative and this may seem hopless to you, but actually triple negative respond well to chemotherapy and some respond completely. I hope your doctors found the right combination for you this time and if not there are still a lot of other options. You have no lymph nodes envolvement and this is a plus. We are here for you to support you whenever you need it. I hope soon you will scan and get good results. My prayers are with you and i send you a message of hope and healing energy. Please keep us posted.
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Mary, welcome. I hope you find support here! You are just so young. It is straight WRONG that you have this disease. I am at the YSC conference right now which is for young women dealing with breast cancer.
Thanks for the support and responses regarding my insurance hassles. I finally got some Xeloda this morning. My doctor called in a supply for 4 days that I paid for out of pocket outside of insurance.It was a crazy morning - had to pick it up 1.5 hours before my flight left (when pharmacy opened) and it can take 30 minutes or more to get to airport from the pharmacy in rush hour. Fortunately, it all worked out and I made my flight. Unfortunately, I had to pay $347 for the pills (which was some discounted rate because the invoice I had to sign with the pills said the cost was over $900). But, given the circumstances with my fast and furious cancer, my gut said it was the best thing to do. I have a sweet, happy little baby boy that needs me to be around as long as possible.
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MaryK...this is so very wrong. I hate that you have to be here. I feel so young at 38 and can't imagine subtracting an entire decade from this diagnosis. I really like what WoodyB said. Not being scared IS unrealistic, but I have learned that hope is a choice and you can choose it in the midst of your fear, and given the options, well, to me it's the only choice. I think it's quite good to go ahead and grieve because this diagnosis calls for it and somewhat ironically, I found it helped me go on living. Also, please check out the triple negative thread...lots of ladies who know its reality but are full of hope. Also, encouraging examples of people living long and well with metastatic tnbc. I also check in with the ladies in their 30s thread and you're welcome there too of course. It's really just a we're too young! thread. (And please read no disrespect to you lovely older but not at all old ladies. No one is ever an acceptable age for this!)
JFL, way to go making sure you got those meds. So glad for you!
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JFL,
I am happy you got your pills after so much hassle but sorry you had to pay for it yourself. I hope they work fast and get you back on track and give you all the time you need with your little boy. Wishing you great response on Xeloda.
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Mary
Welcome and Im sorry you're here. You'll find the women here a wonderful group for support and knowledge. I pray your doctors find the treatment that works for you!
JFK. So glad you got the Xeloda even if you had to pay and so hoping it works for you!!!!
Babs
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kaayborg,
You are right no one should have to go through this horrid disease but much less young people. I am 57 and everytime i read about someone young getting this disease it just touches me deeply. I feel like a mother who just got the news about her own child. I truly hope you and MaryK and many others conquer this disease and get to live long and full lives.
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MaryK, so sorry that you find yourself here but you will get so much love and support on this site as well as information and knowledge as you fight your way through the maze and confusion that is MBC. It is so unfair that you are having to deal with this but you are young and strong with no age related problems that oldies have to deal with as well. I'm sure your docs will throw everything they can at your cancer and your young spirit will keep you fighting.
JFL, glad you made your flight with drugs onboard! Enjoy your trip
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JFL - I am so sorry to hear about your progression. I hope the Xeloda works well for you. I see many women on this board report good results on Xeloda. Have fun at the YSC conference - I am going to LBBC next month in Philly. I get treatment on Fridays this semester - if you are around I would love to touch base and have a coffee. I am going to talk to the doctor about the Stage IV exercise study and try to goose him into looking into it! I'll let him know that I am not the only one who might be interested.
I'm thinking of you. Keep us posted on your progress.
sj
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JFL, I'm sorry about your progression and mad at the insurance and pharmaceutical companies!!! These drugs are so expensive. I'm glad you have a few pills.
MaryK, I'm sorry you have to be here, too. I felt young when I was first diagnosed at 38. I feel young now at 42 being diagnosed with mets. My kids are 9 and 12 and I need to see them off to college!
I just saw my onc today. He said I only have the one tumor on my liver. He spoke to my previous onc from MD Anderson and they agreed that I need to have ovarian suppression shots (which I got today as a PILL injected into my tummy!), Femara and Ibrance. They think I should have a resection to remove the tumor since it's just one spot. So, I will fly to Houston and have surgery at MD Anderson. It's all very overwhelming.
Have a peaceful weekend, ladies...
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(((Luvmyfarm)))
Big decision, but oligometastic cancer (just one or a few tumors) and often be treated and brought to remission with surgery and/or targeted therapies.
With the back-up of anti-hormonal therapy and Ibrance, you're really covering your bases!
I'm glad you have a course of action you can pursue, even if it's overwhelming. Take a deep breath as you head into your next phase.
Others in with oligometastatic liver tumors may want to see this website:
http://www.beatlivertumors.org
warmest healing wishes from a wet, California farm, Stephanie
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I am feeling quite strong today reading comments from all ladies who are fighting with such strength and grace. A Mega THANK YOU for giving me HOPE and support. JFL i wish a never ending NED for you. A bucket full of LOVE for babs6287, woodylb, and kaayborg. since its a liver mets discussion, i have a question. i never had any symptoms from my liver mets though i have 3 out of 8 sections of my liver involved (i don't know about the lobes, ct says this) but now after getting two doses of carbo/taxol plus zometa my liver hurts. i have abdominal cramps and bloating as well. i am not sure if its from liver mets or carbo/taxol. any insights? anyone experienced this?
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Hi,
MaryK, I'm so glad you're feeling strong today. I am, too. Much better than yesterday. This is a roller coaster ride and everyone has ups and downs. Pain doesn't help. I hope your cramps and bloating are relieved soon.
Since I am new to this also, I have a question. After I have the liver resection, and they remove the tumor, will I be considered NED? Will I still have to take Ibrance?
Hugs to all
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Luvmyfam, thank you for your response. i have read somewhere that with a resection of solitary liver tumor, they do not do chemo if you have not had it metastasized to any other organ. but im not sure enough. BUT, i am really happy for you i have read many women had tumor resected from their liver and enjoying NED since then. i wish same for you
and yes you will still be taking hormone pills to cut the risk of it recurring again.
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MaryK and Luvmyfam
So glad you're both feeling stronger. With both my bone and liver mets I really dont have symptoms other than bloating every so often and the SEs from Xelida I've been lucky thus far. And yes this is one major roller coaster ride we'reall on!
Babs
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MaryK,
I am glad we could help. About the pain and bloating, it is mainly due to chemo. It must be effecting your cancer. Either way it is a good sign:). I hope it is killing all the cancer. The bloating also, chemo effects the colon. The carbo will cause water retention and taxol diahrrea. I hope your side effects are tolerable. Wishing you full success on this comb
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lovmyfam,
I wish good luck and hope for full recovery on your liver resection. There is domeone here on this thread who had a liver resction , she had only one tumor and she is doing well since few years back. They do not consider NED before at least six months, and if nothing else shows somewhere else. Normally very few metastatic patients are advised surgery. But some cases are elligible. I am glad you are oart of the latter. Good luck and keep us posted. Prayers are heading your way.
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I hear that the pain in the liver is from the treatment working. But oh boy does it make you worry. I am headed into my 3rd week on Ibrance and my liver and right rib and area below my liver are all hurting really bad. I also am nauseous with diarrhea.
During my last treatment(afinitor/Aromasin) the same thing happened and my 3 month scan was clear.
I know that the pain can be discouraging, and we all pray that the pain is from the treatment working and not from the cancer growing. It is so hard to wrap our heads around sometimes.
Today has been an especially hard day for me. I feel like crap and my whole right side hurts. Faslodex shots a few days ago and I'm almost done with my first round of Ibrance. 5 days and then I get a week off. Sure do hope this stuff is working because I'm so DONE with head games of having my liver hurt all the time.
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Re ports: I hate how my port looks, like a snake under my skin. But I so appreciate it every time I need a blood draw or an injection for a scan. My family says it is not as noticeable as I think it is. But I am very self-conscious about it and wear clothes that cover it. Isy, I was told that only a nurse with special VAD (venous access device) training is allowed to access the port, and that is why a phlebotomist is not allowed to do it. Is there a place you can go close to your home where there are trained VAD nurses? Also, I don't know how it works in Australia, but in my case, if any other doctor wants any blood tests, I ask my onc to add it to her order so the port will be used. Can you get your blood draws through the port on treatment days? I figure if I have to have this ugly port, I am not going to let them stick me in the arm! Quality of life.
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Shetland, it's probably the same here about the specially trained nurses only being allowed to access the ports and I get that. I'm sure I wouldn't want just anyone messing about with it! The hospital where I get chemo is the nearest place where I can get bloods drawn by one of these nurses and I do have the option of going there the day before chemo to do that. Getting it done on the day would mean adding an extra hour to an already tiring day, plus my onc wouldn't have the results when I see him. It's all about scheduling really. I'll se how I go, I do still have one good vein left!
Getting the snake/mouse fitted on Tuesday. Cant wait 😱😝
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MaryK/Sonya
My first few treatments I used to get stabbing pains in my liver. This turned into a dull ache and now I rarely feel anything, just the odd twinge every now and again. I'm sure it means the treatment is working and I hope it soon resolves for you both to
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I'm scared because I have been feeling more liver-area twinges recently. The only thing that has changed is I got an extra week off Ibrance when I had a cold virus. Am I grasping at straws to think that maybe my white blood cells were able to do some extra cleanup of dead cancer because of that, and that is why I am having these twinges again? I had the twinges while taxol was working, but not much in the past several months, until now.
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Shetland,
I was told by my nurse that the port is better be left only for infusions and not to be used for constant blood withdrawal except in emmergencies . Specially when you have a lobg tirm treatment. I stillave few veins so i use those for blood tests and PETS and so on. I use the port only for my infusions . It Seems to be working i have had it for two years with no hitch. I really don't want it to get to a point where they have to find another place install a new one. -
Yikes, I never heard that, Woody. Do you know what the reason is for limiting the use? Is it because there is a risk of wearing out the port or your skin? But the manufacturer says the Bard Power Port has to be flushed every four weeks when not in use, and that is how often I have blood draws. Although my onc thinks eight weeks between flush/use would be fine. I agree, would not want to have another one installed in another location.
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I have never heard of that either and use my Bard Power Port for everything. I do not want to have to get another mouse for goodness sakes! Could it be a difference in the kind of port you have?Shetland your port snake, I believe, is the tail of my mouse. I should post a picture. In addition to his triangle body and long tail, he has eyes and a nose from those 3 bumpy things I think are to help nurses find your port. I make that job quite easy. As for the suit shopping, I've about given up. I might go for a swimshirt (better for chemo sun sensitive skin anyway) or just wear a tank top over it.
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Wanted to weigh in on two topics:
Ports - my implanted port-a-cath will be 14 years old next month and has been used weekly for infusions since. The skin above it looks fragile and pocked, the port septum had several years of bulging (we think from constantly putting in and pulling out needles) and about 6 months ago, it stopped giving blood return. Medicine goes in, but blood doesn't come out. During all those years I also had monthly or quarterly blood draws. And it was used to administer anesthesias for surgery. Because it's not a power port, I never used it for scans or imaging contrast.
While I doubt this model still existences, it's been good to and for me.
Because I'm so thin and don't have breasts or wear prostheses, it really sticks out on my bony chest. I used to be self-conscious about it and dressed to distract the eye from the area. Now that I have a bloated belly from ascites with a foot-long tube protruding from it, I've had to let go of vanity as well as control and dress for my comfort, not conventional beauty. Color, texture, warmth and beautiful fabrics are more important than ever!
Also, I've had substantial liver pain and discomfort for the past 2+ years and have tried to describe it here previously. Since I don't do chemo, I can't blame it on drugs or getting better. Drat! I've been told that the pain is from the liver stretching, the capsule expanding and other organs and spaces being pushed into. I work with a wide variety of methods to engage the pain as healthfully as possible.
Healing regards, liver mets community, Stephanie
P.S. Thank you EMLA, lidocaine cream, for keeping needle-sticks fairly painless.
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things have gotten better as days passed by. I now have occasional liver pain that mostly comes after meals but only for a few minutes. so relieved to hear that the pain is from treatment working (a Mega thanks for responses)...im ready for more if it takes me to NED. I was looking for dresses for my sister's wedding when I was diagnosed out of blue with mets.i thought I wont make it to her wedding but NOW I have this gut feeling that I would
HUGS n LOVE to all beautiful ladies, you have no idea how happy I am to join this site.
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Shetland, i believe it wears out the vein. It should be flushed true but since we are in constant treatments it is flushed anyway
. Mine is flushed every 21 days when i get my infusion. i noticed for the last few times after each infusion it stays kind of blue for few days. It was not like that before. I guess the meds which are infused are kind of harsh on veins on the long run. I don't know the name if mine but it is the second one and it is very good and it was installed at the same place where the old one was. So it is the same vein. I sure would not want a new location yakkkk! One location is more than enough. You are right to hate the way it looks, this one is ok though , it grew on me so i wear what i like ) -
Maryk, i am so happy you are feeling better , things will get better and you will go to your sister's wedding and many more events. God bless and hope to hear good news soon.
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Hi Woody,
Thanks for sharing what you did about accessing ports for blood draws and keeping accesses to a minimum.
Yet, somehow the math doesn't add up for me nor does the anatomy make sense.
I've had over 700 port access procedures, most to infuse, but a good 100 or so to draw blood too. Clearly, there's been no lasting damage to my vein, though the skin above the port is thin and needle-pocked.
My understanding is the line snakes first under the skin, then dives deep into the vena cava where it tunnels within that large and pulsing vein all the way to the heart.
I've actually seen this on an unusual imaging test called something like port-a-cath-a-gram. No, that's not the real name, but my port's septum developed a bulge and this test was done with an x-ray machine and contrast running through the line to reveal the entire circuit.
Also, I was told that the line to the catheter doesn't form adhesions (scar tissue) within the vena cava, because the constant flow of blood around it prevents it from attaching to the vein walls.
While I don't want to practice medicine and diagnose, treat or prescribe, the explanations we've been given differ.
Woody, I wonder if by vein, you mean the skin over the port septum where its accessed by special needles?
Another medical mystery.
warm wishes, liver mets sisters, Stephanie
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So what color dress are you getting for the wedding, MaryK? Cuz you are going to be there.
Ok, Stephanie, we will add "Port Champion" to your list of honors. I have decided not to worry about mine.
Yes, kaayborg, I can see the mouse now. My snake has a triangular head, like a rattlesnake. Hmm, what does it say about us, the images we came up with? Is it like a Rorschach test? As for swimming, I am going on a tropical vacation this year, so I have to decide whether to hide under the rash guard all the time or just put on my attitude and defy--I'm not sure what. (By the way, Land's End has a pretty good selection of rash guards.)
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Oh, Shetland, that has got me chuckling. I do see the snake now, too. I'll be checking out rash guards at Land's End shortly. Seriously, how bad is the sun sensitivity due to chemo? We have a community pool and spend two weeks at the beach. I always wear tons of sunscreen because I'm one of those cautious, cancer prevention kind of people (a lot of good it did me) and don't typically burn but have never done a summer with chemo before.
MarkK, last fall I went to a sneak preview for a park opening this spring just 5 minutes from the home we had just moved in to. I left so excited but also fearful that I'd never get to enjoy it. Seems silly now as most the time I'm sure I've got a good long while. Confession, however. I was at a thrift store this weekend and found a very nice pair of snow pants (Land's End actually), which I've been needing for some time and that nasty thought popped right into my head, "I hope I get a chance to use these things." GRRRRRRR!!!!!!!
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kaayborg, Those thoughts pop into my head all the damn time. It sort of drives me nuts and I catch myself saying "STOP IT!!!!!" But it's a natural spontaneous thing I can't seem to help. You will use them and make sure you let me know how the skiing was. Right now we were supposed to get a HUGE storm but it is just flurries all day. Boo.....One of my friends asked me to go to her hot tub the other day and I just couldn't do it even with a pretty decent suit. I feel very self conscious with weight loss and just everyone knowing about my illness. I feel like the whole small community I live in will be waiting with baited breath to see how I look at the pool. Maybe after I go to the beach or a hotel pool away from home and get used to the feeling....... (And get a spray tan!) LOL! Scans on Thursday and the scanxiety is building
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kaaborg. Good luck with your scans. I hate Scanxiety!! Do you get your results right away? I spent over two years making myslef crazy waiting the full 24 hours for results. So I called and asked to speak to the head of the department and told him how stressful it was to wait and now I see the radiologist right after my scan. It saves so much stress.
I hate those nasty thoughts of thinking I won't be here for something in the future. Especially with an 8 and a 10 year old. It cripples me sometimes. I am sure that most of us deal with depression. I mean who wouldn't be depressed about knowing how you're going to die but not having any clue when. It's a really sad way to live. I try to make the best of it and in front of people I am always so positive. But when I'm alone I do get really sad and I cry a lot. Not huge cries usually(takes too much energy). Just a few tears. Doing it as I write this now. Just sick of being sick. And not knowing the future is really scary. Sometimes I feel ok with it all. Sometimes I feel like I know I'm going to heaven and God has a plan for me. But lately I have just been feeling sad and angry because I want to be here in this life. I want to meet my grand babies. But unless a miracle happens I don't see how that is possible. But hey miracles happen everyday
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Sonya, You just summed up my feelings except that unfortunately I am not as positive as you that God has a plan.... I wish I was. I have never been very religious and am feeling sorely short on faith right now. Although I sometimes get a fleeting feeling that I am at peace with an uncertain future, the feeling doesn't last long at all. I know in my heart that I am NOT ok with it. I get both sad and angry too, but crying does suck a lot of energy and can ruin a decent day in no time. So I try to keep it short and private. It is pretty hard to keep up the positive attitude around people 24/7 but I don't want to chase away the ones who have stuck by me. (Yes, some have faded away rather quickly) Talking to a phycologist has helped me somewhat, and I plan to make it a semi-regular thing, but she really can't say anything that would convince me that dying early or soon would be OK. I love my life so much and want to be here desperately. To laugh with my kids, see those grandkids and hold my DH's hand when he is an old fart...LOL! You are right, miracles happen everyday and so does surviving beyond stats. I am hanging onto that.
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Stephanie,
I appreciate you replying on my discussion with Shetland. Frankly, i do not pretend to be an authority or to provide information based on anything but my own experience. I try to help and have conversations here with others either to help them or help myself.
It is not a matter of math, sciences oranything adding up. It Is simple conversation between human beings.
Personally i never searched ports and i will not very soon. What i wrote was personal and from others who were on this board.
Wishing you pain free , well rested night.
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Artist and Sonya,
I feel the same way. My kids are 9 and 12 and I really want to see the off to college. Grand babies seem like a microscopic possibility to me. Also, I've been married to the love of my life fo 15 years in June and I really want to be those two old folks sitting in rocking chairs on the front porch, holding hands.
As for God's plan... I know he has a plan for me life. It may not be what I want (is it ever?), but He see's the big picture and I am going to play my part. I really feel like I am here so my children will do something spectacular with their lives.
Just my two cents. I am hoping for miracles, too. For all of us.
•Erica•
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Hi Woody,
Email and forums are so difficult for conveying both information and support.
Tone is lost and it's sometimes close to impossible to tell how we come across to others or their reactions to us.
I'm guessing from your response, but don't know, that you took my reply personally?
And that I came across as a know-it-all by spouting informational math and science?
That from your perspective you feel criticized because I interrupted and corrected your conversation?
See, there's so much I don't know about how my reply affected you.
I do know that I feel saddened about possibly hurting your feelings and want to apologize.
To offer, I've participated in health online support groups for many years, have done much medical, mathematic and scientific research to understand how "they, the medical folks" think, so I can find the best possible medical and holistic care for myself and those I love. Accuracy and medical factuality are very important to me. And I really, really try not to offer medical advice or engage in medical fortune telling.
One of my personal "hot buttons" is inaccurate medical information being shared online that may lead to improper care or choices.
bco members have an amazingly high level of informational understanding along with supportive caring for one another. And even when members are having a written conversation between themselves, dozens more are reading and taking it in. I've grown to appreciate everyone I've met here, whether we're similar or different.
Striking the balance between factual information and conversational support is difficult.
Woody, I want to apologize for anything I said that pushed your "hot button". Please forgive me. I want to continue our conversations and connections.
I hold only good intentions in my heart.
and offer warmest healing wishes for all, Stephanie
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Stephanie,
Thank you for your post. No i am not offended and hurt in anyway. I am also very careful in not posting things which may effect the path people will choose for their care.
All your posts are appreciated, welcome ,very informative and supportive. You are kind, gentle and helpful.So no offense and none taken.
Love and comfort always.
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Thank you, dear Woody.
Your message has lifted a burden from my heart.
I so treasure you and everyone here and want to offer only support, not dis-ease.
warm healing wishes for all, Stephanie
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Sonya, Artist, Erica ~ Geez, your posts tugged big at my heart and you can count me in on feeling just the same...those thoughts that keep circling back around and the tears that well up along with them. Then, you push it all back, get out of the car or walk out of the bathroom and just keep moving. I've taken a few times when no one was around to let them loose well and good, but am also surprised that that's over pretty quickly. It's more a quiet drip, than a waterfall...which is strange to me because I've cried rivers over lesser challenges for sure. I like to be honest and I don't feel like I'm faking around other people so much as I am deliberate with my thoughts because, for the love of Pete, I can't walk around all the time thinking about this and getting all drippy. I also still kind of feel like the reality of the whole thing has still yet to fully hit me. Grandchildren...another stage iv gal I know locally just had her first grandbaby. I expressed my lack of hope for this. She said, "Don't give up on grandkids. Just don't." She and I both know there is plenty of reason to think that impossible but I'll accept her "just don't" and try my best to go with it. A little less of stretch, but still a mighty one, I hope to see all three of my girls graduate from high school. Most times, that is my goal, which is so pathetic given I, too, planned on shuffling through to the end with my old fart. One of my shared waterfall moments came in bed when I noted wrinkles at the corner of my DH's eyes...because that caused this thought to pop, "I was supposed to see you older than this, so, much, much older than this."
As for God, I was born and raised as a big time believer but my faith has turned out to be more of something I've chosen in the midst of doubt. Some know for sure that heaven awaits us, that God is with us and looking out for us. I don't know for sure but choose to believe it and feel my life is better for it. I can't accept that cancer is God's plan for anyone's life but tend to think of it as part of this imperfect world, something sad and dark but from which God will wring as much good as he can. It's that goodness which I can feel for certain that keeps my faith alive. I was reading to my girls tonight, the Tale of Despereaux. Kate DiCamillo wrote, "And hope is like love...a ridiculous, wonderful, powerful thing." That speaks volumes, doesn't it?
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Oh kaayborg, I like that quote a lot, it does speak volumes! I too was raised with a lot of religious background but somewhere along the way grew a little cynical. I know there is some force greater than all of us, I'm just not sure what...I am trying to do things that will help bring some faith back into my consciousness. I just can't "make" myself believe. A few people have been trying to encourage me to quit working but I feel it helps keep my mind occupied and the tearful times in check. And I try and remind myself that at least my kids are grown and on their own, I m grateful for that!
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Hi ladies, just wanted to drop in and see how everyone was. I just had my PET scan and am now impatiently waiting for the results. I have been on Ibrance for 6 full cycles now. Last PET I had gone from 12 spots in my liver down to 3!! I had to have my gallbladder out 2 months ago, and one of the spots had started spreading from liver to gallbladder, so the surgeon cut it out. I was relieved to here another one down. My tumor markers went down, but by only a point this month. The ups and downs of this new world are sure hard. Like you ladies above, I have young children I want so much to be here for. My kids are 6, 4,4, and my baby will be 3 next week. My daughter lost her first tooth this week, it was strangely very emotional for me. I think for the most part, I live in daily denial. I feel good, still working, raising 4 kids, with twins and kids so close together I have been really tired for years, so used to fatigue. But then one of my babies hits a milestone, and it really throws me. They are too little to really understand what is going on, so I try really hard to make our days as normal as possible, which in turn helps me I think. Hopefully get scan results today or tomorrow. Wishing all of you ladies a beautiful day!!
Alissa
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Alissa good to hear from you. I know the anxiety of waiting for PET results is unpleasant to say the least. But i hope you will get stable and good results. I hope you are feeling better after your gullbladder removal. As long as your tumor markers are down , even if by one is good as long as it is not going up.
You are not in denial , it is the love for your children which drives and makes you deal with your disease as normally as possible. Moms are tough when it comes to protecting their children , they are resilient even when they get sick. It is very heartbreaking specially when your children are so young.
I wish you clear results and pray you will be around for each and every milestone your children hit. Keep us informed. Hugs.
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Alissa, I hope you receive good scan results. I know what you mean about living in denial. I am the same way. I continue to barrel through everything as usual. Sometimes, I question what I am doing and then realize I prefer to live like I am for now rather than "checking out" of life. There may be a day I need to slow down but not yet.
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Hello ladies,
I was dx with innumerable liver mets 2 weeks ago. Also a spot on the hilar node & trachea. So, I have been reading this thread, bits at a time.
Kaayborg, enjoyed the quote, I will need to reread it, twice a day.
I got an infusion of Taxatere yesterday. Low dose, see how I do. Feeling weak, but know it could be much worse. Will get a Neulasta shot in a few hours. Ugh......
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Holeinone,
I am sorry you find yourself on this thread. I remember you few years back on a different thread and i am really sorry for your liver mets. Taxotere is an effective drug and i hope you respond very well to it. I hope you find here the support and the help you need. The ladies are wonderful and extremely supportive. Wishing you a good response and healing lights.
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I don't even know what to write and I'm having trouble seeing through my tears. I have been NEAD but I think something is going on. I have been feeling slight pain in the right liver area, and increased reflux which was a symptom I had before I was diagnosed. I just read my March PET-CT report and it shows an area of "mildly increased activity" and a corresponding lesion which "has increased slightly in size" in the right lobe. Along with this my CA 27-29, while in "normal range" is double what is normal for me. My onc agrees it is "worrisome" but not enough to change treatment. So they won't give me an appointment for next week, but expect me to wait until next month. And I'm the one who had to say, hey did you actually read the report, after she said things were unchanged. I wonder if I should be looking into interventions for the liver or getting a second opinion. I am at a well-respected cancer center. I'm kind of freaked out right now.
I just feel like this is the beginning of the end. After a complete response to taxol, I really thought letrozole would hold me for a long time. I'm on Ibrance, too, and I expected at least the 20 months average from it. But now after about one year on it, if the cancer is already back, I think I'm really in trouble. That I won't be one of those who lives five or ten years. That has been my hope until now. I just booked a long-overdue vacation for me and my husband, and my dance classes (both teaching and taking) are going so well and I'm enjoying them so much because I have been healthy and not disabled by cancer or treatment. Now it will all be snatched from me. My kid has so many things coming up, has good things happening and also has struggles and needs a mom. My poor husband. My poor parents.
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Oh Shetland, my heart breaks for the pain I can hear in your writing. I am so sorry. But the fact that your onc is not concerned might be a good thing, plus the word "mild". I have heard that little movements up or down happen all of the time. I see my onc and like her, but am in the process of seeking 2nd opinions for a liver specialists, so I know somewhat how you might be feeling. As my mom tells me, sit down, have a good cry, let it out, then put on your game face for battle. A silly thing to say, but for some reason it works. Just know I am thinking of you and sending big hugs.
ALissa
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Shetland,
I am so sorry and i can feel your anguish and panic. I feel with you very much as my symptoms before diagnosis were the same as yours. I also like you have been NED for a year and five months. But lately like you , i have a little pain on the right side, reflux and indigestion. I , like you feel that something is going on. My last PET/CT showed fatty changes in the liver but no activity , lesions on bones but also with no activity.
When i told my onc about the right side pain , she ordered an xray. It showed nothing. What i want to tell you is that there may be mild changes and your markers have doubled but still in the normal range, even if not for your usual normal. This does not mean your treatment will not work whether your onc waits one month before changing or not. I know talking is easier than doing. But like Alissa said , have a good cry and then sit and think. Do not make rash decisions out of panic. If you trust your onc , then you wait this month. If you do not feel comfortable with her decision then look for a new one. From what i know liver mets are not resectable except in rare cases . If you have only one lesion you maybe be candidate , you can always check it out.
Please do not think it is the beginning of the end even if there is a mild activity. There are options and resection may be one of them. Your symptoms maybe be something else. If God forbids it is a progression , then you prepare yourself for a fight, don't let cancer beat you and most importantly don't let it ruin what you have with your family and your life.
My prayers are with you and i hope you soon get to put your mind at ease. I will be thinking of you , please keep us informed. Hugs
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I hope that someone on this thread could help shed some light. This past week has been full of appointments and TONS of scans. I've been having right rib pain and pain under my ribcage. My stomach bloats like crazy after I eat anything and I am extremely nauseous. I've lost two pounds in the last week. My CT and sono show what is believed to be 3 liver cysts and 1 hemangioma. All three cysts are over 1.5cm and the hemangioma is 1.7cm. I had X-rays of the ribs and that came back fine. They are scheduling me a PET scan. I can not have a MRI due to my expanders. Anyone with liver mets have anything like this happen? I'm trying to decide if I need to get a second opinion. The pain is insane.
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Mama2twinsplus2 and Woody. Thank you. Your kind words are helping me feel a little better. Yes, panic is a word that describes some of what I feel right now. You're right, I need to have my cry and then carry on. I need to enjoy today and do the things I need to do. But I keep crying again. I'm having trouble focusing on getting anything done. It's like I was too happy lately, so let's knock her down again. I feel like this is partly my fault for exercising less, eating more sweets, staying up too late. In other words, for living like a normal person. And for stressful things that I just recently got fixed. I think it's back and my onc needs to listen to me.
My onc is out of town, but says she will call me tomorrow. I really want to meet in person, with my husband there to help think things through. In the past my onc said we might consult her liver guy if something popped up, and I want to get that ball rolling. I want to talk about Aromasin/Afinitor (which she said several months ago would be next if there was progression) vs. some chemo or a clinical trial. I want to know if there is a treatment that will not prevent me from dancing or cause the kind of depression I had during my six-week trial of Aromasin before I started letrozole + Ibrance.
Woody, I'm sorry you are worried, too. It is a terrible, nagging thing. It's good your PET showed no activity. Stotamom, the PET scan sounds like the right next step. It should help clarify things.
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Hi Ladies
Regarding ports. Does anyone have the problem that the nurse cannot get a blood draw from my port. It works fine for getting the chemo but they can't get any blood out of it.
Any ideas
Thanks Rosieo
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Shetland,
You are not the reason it is back (if it is back). I smoke, stay up most of the night . No one is ever the reason why this stupid disease keeps popping all over us. So please d not add guilt to the stress of alleged progression. It is good that you will be able to talk with your onc soon and maybe convince her to see you. Here i can see mine whenever i want, it is not restricted and frankly , i think she should see you and listen to what you have to say and also check on your new symptoms.
A/A is a good option if prigression is confirmed and her liver guy is also another one. Aromasin was not good for me in controlling the disease and the SEs were terrible. Have you taken faslodex? Since you responded very well to taxol another chemo maybe a good option , like abraxane. I hope you are able to talk about all this with your doctor.
Thank you for your kind words , my symptoms are very mild , i will not be pessimistic lolll until i have my scan then we will see. If i have a progression, then another i will require another liver biopsy to make sure i am still her2+ because i am sure they would suggest kadcyla( tdm1). But cancer mutates. I will know next week.
Meanwhile, i hope you soon find the answers you seek and feel better and get back on track. Be kind to yourself.
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Heleinone...inumerable mets here, too, along with two doozies (were 10cm, now 3-4ish). May your new treatment kick 'em down to nothing! Does your center offer the On Body Injector (OBI) for Neulasta? It's new I believe and I love it, though it sounds kind of weird. They put it on you at infusion (I do my belly), then it goes off 27 hours later and administers meds.
Shetland, ughhhhhh. I'd feel the same as you, that my fears were legit and symptoms were worrisome. In your shoes, I'd be doing the same and getting in sooner than a month. And, I know my onc would oblige me even if she didn't feel it actually necessary. She has said this many times..."I don't want to cause you anxiety so if scanning sooner is helpful, I don't mind at all ordering them, but I think it's okay to wait." Sometimes I have waited and other times not.
Also, I will add that my onc told me that she would not change my treatment right away even if there were some progression. We might tighten the scan schedule but the ultimate goal is to stay on current treatment as long as possible. I do highly respect her opinion on matters. I, too, am at a great cancer center but gained further confidence in my doctor when my local stage IV friend flew to MDAnderson and was told by doctors there that her onc (mine as well) was as good as they get and she should stay home and feel confident there is no better treatment found anywhere else. Still, I'd want to know the plan,
And, I'm in complete agreement with Woodylb, this is not your doing. Cancer just does this. Exercise and diet and rest and zen behavior, I think they'll help us feel best but they're not going to stop this. Make sure you get the very best care from your onc. You deserve it. I'm rooting for you and praying for you. Keep us posted, open the floodgates of your worry, then reign it back in. Did you see Bridge of Spies? I'm always thinking of the guy on trial, how Tom Hank's character said to him, "You don't seem worried." And he would reply, "Would it help?" I love that guy. Wish I could be more like him...but not a spy.
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Shetland, I am feeling for you too. Feeling new pains is so scary and makes me panic too. My mind can go into a spiral pretty quickly. Just remember a few things. First, it may not be progression at all and I pray it is not. Also worrying yourself sick does not help in any way. Stress makes my stomach hurt, crying makes my head hurt, and ruminating just makes everything worse. God forbid, if it is slight progression, there are many women who have had major progression and still found Tx that kicked those mets butt and got them back to a manageable state. I hope you do trust your Onc but also remember that especially at a major center all of the Onc's get together for regular "Tumor Board" meetings that include conferring with experts from all over. Like Woody says, don't let the unknown ruin your days now and don't let cancer beat you! I just know there is still plenty of life left for you, progression or not. And please never ever blame yourself! I have a friend who eats like a pig, drinks like a fish and smokes like a chimney and is healthy as hell. ( As far as we know anyway) Go figure. I am sorry Woody that you are worrying too. I hope the next scan shows only improvement for you. Welcome Mama, I'm sorry you have to be here, especially with little ones. I can only imagine how hard this is for you too. Also welcome holeinone. JFL, I too live in denial a lot of the time as a coping mechanism, but my scans are Thursday so reality is rushing in right now. May we all experience some Spring renewal very soon!
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Woody, kaayborg, artistatheart. Thank you so much for being here for me. Thanks for the validation and for telling me it's not my fault. I will probably insist on a March appointment. Should I tell her how it shakes my confidence in her that I had to point out the worrisome part of the PET report and the doubling of my supposedly normal TMs? She is very caring and experienced, but why wasn't she paying attention? If there ever was a time I needed to see her this is it. I think she doesn't think I need an appointment because she is not ready to change treatments, but from my point of view there is a lot to talk about and some things to set in motion now rather than next month. I'm going to ask if tumor board weighs in on progressions. I don't understand your onc's reasoning, kaay; why not switch treatment right away, before it gets worse and goes more places? Is it so you don't go through the chemos too quickly? In my case, I want my NEAD back if there is just one spot in the liver. I haven't seen the movie but I like that line. Yes, letting this ruin my days will do no good. I had a private lesson tonight and I started to cry, but I breathed and got hold of myself. The teacher asked if I wanted to leave, but I said no, this isn't going to stop me.
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Shetland, I would tell your onc that you are feeling extremely anxious and that it would help a lot to see her earlier. I wouldn't share your shaken confidence in her. Though, I'd hope it not be the case, sometimes this sets people on the defensive and they're less inclined to want to help. Good question about my onc's reasoning...my assumption was to buy time on an effective drug before putting it in the "done" basket. Progression noted might be just a slow progression b/c it is still being kept in check by the chemo (so it is still working in a way) and I could gain many more months on it under careful watch to ensure it stays nice and slow or stable. As for going more places, I'm under the impression that something could show up anywhere and anytime and not necessarily have come from liver progression. I'm not sure that liver progression makes it more likely to have it show up somewhere else or not. All good questions to ask. And, I think it's always possible that her decision not to change at first sign of progression has something to do with the specifics of my situation. Who knows? You should see the movie. I don't usually go for "spy" movies so much but love Tom so I saw with my husband. I loved it..great theme of human capacity to extend love for all. Thinking I want to watch it again.
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Shetland, I am glad to hear you feel a little better, and totally understand all of what you are feeling, I would feel the same. I called my onc office 3 seperate times to get my pet results. I had the report in hand, I just wanted someone to read through it with me and help me understand the things that confused me. They finally had the PA call me, probably so I wouldn't call again! The results are stable, no new areas of disease and liver mets stable, so very relieved! Sometimes we have to push for what we want, but if it clears things up and you feel better, its worth it! Hugs to all you ladies!
ALissa
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Alissa such great news!!! Do the happy dance!!!
Bab
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hugs and love to all courageous ladies...your posts are full of information, support and hope. woodylb, your posts are always full of love and hope THANK YOU indeed for being here for us newbies. kaayborg! I have multiple liver mets like you. are they gone now? or stable? how long it's been?
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Congratulations Alissa! such a wonderful news. praying NED for all.
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Alissa , Hourray! Happy dance for you !
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I never came back and updated after my Y90 procedure. I had 2 liver tumors before the procedure and now I just have one. The one that is still there has shrunk a little bit. I am still doing treatments of herceptin and perjeta every 3 weeks. I also started on faslodex about 6 weeks ago. I am feeling stronger and better each day. I have not been posting but I am keeping up with all you wonderful ladies. Welcome to all the new ladies. There is so much to learn on this thread and so many people who can share so much knowledge.
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MaryK - I am on my 11th cycle of gem/carbo (began in Aug.) Mets still innumerable but my two largest tumors are still shrinking. Began at about 10 cm each and down to 3-4 cm each. Hoping my dose reductions and longer recovery times needed for platelets don't affect progress. Also, having
Artist - Thinking of you and your scans tomorrow. Hope you get good results fast!
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Hello, Everyone. My onc called today as promised. She had talked to the radiologist, and called the current scan evidence "soft" and "subtle". It could be inflammation. There are actually two areas of concern in the liver, one on the right lobe and one on the left lobe. She says a 25% change would be a usual amount to call it progression. On the other hand, she emphasized that she does not discount my gut feeling, and agrees that combined with higher TMs and my physical symptoms (some pain, reflux, bloating) it is worrisome. The plan is to see me and check my TMs again in two weeks. She doesn't want to set aside a treatment too soon. But if a change is needed, I will switch to faslodex. She wants to use that instead of another aromatase inhibitor so it will be a different kind of hormonal therapy than the one that just failed. When I asked about chemo, she emphasized quality of life and indicated that with a slow, small progression hormonal therapy would be appropriate. She said that if I need to see the liver specialist, he will see me within a week, with no long wait for an appointment.
She spoke with confidence born of experience, took my concerns seriously, answered my questions, and recommended that I see her in just two weeks. I do trust her as a doctor and like her as a person. I will attribute the glitch to her being out of town.
I'll be so disappointed if I only got a year out of letrozole + Ibrance. But what can I do except carry on and get the most out of each day? It's going to be hard, though, because I have lost some hope. But not all. I feel better having talked to my onc and knowing what the plan is. You guys have been a lifeline to me.
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Mama/Alissa, good news that you are stable! How nerve-wracking to have to keep calling trying to get results. That's how it happened for me this time, too. But the nurse said she had left me voice mail twice, though I never got it.
Kaayborg, I'm glad to hear things are going in the right direction for you. (Is Bridge of Spies very violent? I'm a "sensitive viewer".)
Artist, I will be thinking of you tomorrow on your scan day. The luck of the Irish to you. I did wear green to my scan, and I thought of you.
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Shetland, I had my confidence shaken with my Onc when she contradicted me on some med info then dismissed me. When I came home and looked it up again and saw I was correct I had to talk with her, even though I was a little intimidated. It helped me a lot to feel I was acting as my own advocate and she was much more sensitive and attentive on our next meeting. I am so glad you got that chance too and got some answers right away. It makes so much difference in our well being. I failed Ibrance and Femara after 3 months because of elevated liver enzymes and she put me on Faslodex too to try a different mechanism. She thinks it was the Ibrance that was the problem and I may be able to return to Femara someday.
kaayborg, I hope those meds keep shrinking those tumors all the way to NED. Thanks for the best wishes tomorrow! I'm going to get that movie too although like Shetland I'm a "sensitive watcher" when it comes to too much violence! Yah! Good news for you too Mama! Welcome mary and Babyruth!
Thanks for the best wishes too Shetland. I have to wear green as I work at an elementary school and the kids get VERY disappointed if I don't! Plus I'm 3/4 Irish!
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I didn't mention the glitch today (the glitch that she had emailed that everything seemed unchanged) during the phone call with my onc. Along the lines of kaayborg's opinion, I thought that would only cause damage to our relationship without doing any good. I imagine she just skimmed the report in her hotel room, or only heard from the nurse whose favorite line is "within normal range". Or maybe she was just wanting to wait and see before alarming me. In any case, her response to me when I pointed out my concerns was all that it should have been. To me this was different from having the wrong facts about a drug. It sounds like you handled that well, Artist, and that your onc learned something about relating to you, her patient. Now, I did fire my first onc for forgetting our conversations between appointments, reading someone else's records on his computer while he was supposedly talking to me, and saying, "It's up up you" whenever there was an important decision to make.
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Shetland , i am so glad you talked to your onc and that she made you understand her point of view. I believe she is right though if the changes are very subtle and mild , maybe you should wait a little before considering this treatment a failure. Faslodex is a good choice and is know to work well on ILC. I believe she will recommend Chemo if there is a big progression God forbids.
But i am glad you feel more at ease, don't let go of the hope yet. It maybe a simple inflamation like she said. Two scans back i felt the same as you bloated and reflux and all the usual symptoms , when i did my scan there was nothing wrong. It turned out to be lyrica which i was taking for neuropathy.
Femara causes all kind of SEs , if i remember correctly when i was on it , most of the time i was on nexium, ibrance may cause this also. From what i understood from the ladies when on ibrance they got high liver enzymes. Some cancer meds are good for cancer but not good for the liver. I hope this is simply your case.
Keep informed and i hope you soon have your mind put at ease. Do not lose hope.
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Thank you, Dear Woody.
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Shetland, this is good that you got some information. There's more I want to say but work is calling! As for the movie, I would certainly also be described as a sensitive viewer. I don't remember anything too violent. It was bigger on drama. Mostly, I just remember being surprised I actually liked it a lot.
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Kaayborg, I recently saw Bridge of Spies as well and it was excellent! I would definitely recommend it to everyone here. It is not gory, violent or anything. Laughing about the "Would it help?" line. That guy won a Best Supporting Actor award for that role.
Shetland, I read your posts and felt like I could have said most of the things you were thinking and feeling about your fears, frustrations and questions over whether your lifestyle is a factor. I have had the same thoughts/fears about my own situation. However, as an outsider, I would definitely tell you not to be so hard on yourself. You did not cause this recent PET flare! Also, although NED or NEAD is our holy grail, many others here live a long, long, long time without a "clean" bill. "Stable" can work just as well as long as you aren't having side effects from your mets. You are doing the right thing by pushing your doctor for the information, urgency and answers you need. We are literally fighting for our lives and no one in your doctor's office will care about your life and pay as close attention to the detail as you. That is your role. The doctor sees tons of patients, many of whom may remain in the "stable" category for a long time after showing a hot spot on a PET scan. I also think that doctors don't want to toss a medication too quickly until it is clear it is not working. So, don't be too disappointed. Just know that you are your own best advocate, regardless of whether or not you have an MD after your name. The oncologist is there to inform you with the medication info you need and facilitate your treatment but you are the ultimate self-advocate. That is how I look at it, at least. I don't mind being annoying and pushy when needed, particularly under the circumstances! You are fortunate you are strong and well-informed enough to advocate for yourself! Some just don't have it in them to do that.
Woody, I always enjoy reading your posts.
Artist, I am glad Faslodex is going well for you and your enzymes are under control post-Ibrance.
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Thank you for the encouragement, JFL. As much as I do like my onc, I worry about someday being to ill to keep track of everything the way I do now. As you say, they see so many patients. The most important thing is I feel I can trust her knowledge and judgment, even though she may misspeak once in a while. But I still need to understand everything and explore my options. She seems to get that. I see you have changed treatments recently. I hope you are feeling well and will see good results.
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Thank you JFL, i do hope you soon give us good news about Xelda working for you. Best wishes.
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Shetland, I feel the same way about keeping up on current meds/treatments if I get too ill. There is just soooo much to learn and know and wonder about. And since you are ILC like me, it seems even a little more complicated as to what options we have or what should come next. It is exhausting trying to keep up and live your life at the same time. Luckily I learn so much here, it is incredibly helpful to hear it from women going through it. No BS just the facts Maam!
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wow, so much going on this thread when you look away for a few days! Have spent a good hour or so catching up, laughing, crying and generally feeling upbeat about all the love and support on here.
Had treatment today using my lovely new power port. It's very small and round and I can barely see it, it's the latest model so they tell me! The nurses were all very excited and came to have a look at it, all of them so pleased they no longer have to play chase the vein along my one good arm.
Been thinking a bit about a few posts back the discussion about when things just get too much for us and the dark clouds descend. I work with refugees and asylum seekers and can always look around and see people whose lot in life is far worse than mine. When you hear about someone who has lost every member of their family in a mindless conflict the mind just boggles as to how they carry on. I also think a lot about my beautiful cousin who ran a riding school for disabled children and dropped down dead of an aneurism at the age of 50 or my lovely neighbour who would do anything for you despite the fact he had renal failure and had to go to dialysis four times a week without complaint. A local footy star died here a few weeks ago of a massive heart attack whilst out riding his bike. I could go on. Crappy and terrifying as this disease is at least we are blessed that we can make the most of our time with our loved ones and really relish each day whilst we still can.
Enough of my ramblings. Doc thinks my liver definitely feels smaller in fact she said the right lobe now feels "empty" hurray!
Have a good weekend everyone.
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Isy, You are so right and sometimes it helps me a lot to bring this to my attention. Sometimes I feel so alone in this fight but then remember that there are millions of people suffering all over the world, It really does help to put it in perspective and make me feel more a part of all mankind and less sorry for myself. On that note I got my scan results today and preliminary says Stable to slightly better! She said we can talk about the smaller stuff then so I wonder if there has been some progression in one spot and improvement in another. Whoop Whoop! I am so happy with her for not making me wait until Monday and will take this news with a happy heart.
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Artist! So, so glad to hear this!
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Artist, such brilliant news! stable is good, slightly better, a real cause for celebration. No matter how little the steps, all going in the right direction. So pleased for you
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Artist I'm thrilled for you!!! Happy dance time!!!
Babs
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ok, so probably not the right forum to post this but I am feeling bummed out and you have become a good support system. I had an echocardiogram today and saw the cardiologist who follows me. To summarize, my ejection fraction is down to 40% from 55. This resembles what happened to me last time I was on Herceptin. They will do another echo in 3 months to see if this was a blip or is a trend. If it is a trend, then I will have to take a break from Herceptin. I worry because a lot of the other targeted therapies are more cardio toxic than Herceptin which will limit what we can do. Of course this all could be for not, but we all know how it goes. Putting this together with my higher (but normal) tumor markers and I am a bit worried. trying to stay positive but for now feeling like hot run over by a car. Tomorrow I know will be better but today sucks. I hate this dam cancer and all the worry it causes.
Thanks for the support
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left,
I am sorry honey , i remember a while back you had the same problem. I hope this one is only momentary . But let me tell you something. I started herceptin, perjeta with taxola year and a half ago. The taxol was stopped after six months. During this time i was being checked for heart ejection every 2 months. About 8 months ago my ejection went down to 40 . I was given concor cor and ramipiril and i skipped one dose of herceptin perjeta. It went back to 55. Then we did other tests which showed my heart reserves are healthy.
2 months ago the same happened , i did not skip my doze but my heart doctor increased the dose of ramipiril. Now next week i will have another echocardiogram, if it is low i will skip the next dose. What i want to tell you , you may not have to stop it for a long time. As long as your heart reserves are good it is always reversible.
If your marker is a little up but still whithin the norm do not worry. Sometimes it differs in labs by few points.
I hope you soon feel better and your ejection goes back to normal. Keep us informed. Prayers heading you way. Hugs.
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Left, I'm so sorry to hear that you have new crud to worry about. I am glad Woody has some great advice and experience to impart and I hope it all clears up soon. 3 months is a long time to wait and worry......Although it seems that every time I hear of someone with a new dilemma the Docs come up with a solution to alleviate the problem and I think they will for you too. Try to hang in there Left, tomorrow has to be better. Thanks all for the well wishes.
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Don't mean to be a bitch, but it would have been nice if you all would have given HoleInOne some support with a new diagnosis
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sas- schati
I am sorry I missed her post. I was away and did not see the post as I am several pages behind.Going back I did see at least one person did respond.
I am sorry as this is a group who supports each other. I hope she gives us a second chance as I do believe there is much support and useful information to be found.
She's lucky to have you looking out for her.
I hope you give us the benefit of the doubt as well. I know you have the intentions. So keep an open mind.
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holeinone-
Sorry to have missed you. I hope thetaxotereis doing its job and gettingvrid of those lesions.
My initial mets diagnosis involved a liver so full of rumors that the liver specialists said they couldn't help me. That was over3 years ago. I had one relapse and that solitary tumor was removed surgically.
I say this because there is hope.
Make sure you are getting something for the pain neulasta causes. Claritin d is the best for that. Don't ask me why. But it works.
I wish you the best
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Holeinone, I went back and found your post. I'm sorry I was so upset myself that day, that I failed to respond. If we had all been in a room together at the same time, instead of on an internet discussion board, we would have all been in a group hug. I'm another with ILC and liver mets three years later. How were your liver mets discovered? When will you get a report on how the cancer is responding to taxotere? Hoping you will have good response and minimal side effects.
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Holeinone, welcome to this group. I hope you find the support here that many others have found. A liver mets diagnosis can feel scary but there are many women that have lived years and years and years here with liver mets. These threads move so quickly sometimes that I must have missed your original post. I love being a part of these threads but am not the best at keeping up when they move quickly! Thinking of you this weekend.
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Artistatheart, I'm so glad to hear that your onc called you with a good scan report. Ugh, I wish you didn't have to wonder what the "little things" are. But, yeah, let's focus on the stable to slightly better.
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Artist,
I am so happy for you on you scan results yayyyyy! I hope faslodex keeps working and that your next scan would be even better or clear
. Do not worry much about the smaller stuff , if they were too important she would have mentionned something. Keep us informed. Hugs. -
Thanks Sas for pointing that out. Holeinone, I think that we were all so focused on Shetlands new worries that we inadvertently passed right over you. So again welcome to the board no one wants to belong to. I too hope you will give us a second chance. You will find a lot of support and advice here. There are a lot of women in the same boat who have been going for a long time. Take it one day at a time and remember there are a lot of treatments out there for you.
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hellos ladies, my mom has been just diagnose with liver mets. I'm really scared everything has happened so fast, in Dec she went for a follow up, had ct scan done,they had found spot on her left lung, they said were not concerned. Three months later they repeated now it shows three hepatic lesion on the liver 1.4 cm, 1.0cm and 8mm possible another one close to gallbladder. Chooses were hormonal therapy tamoxifen once a for three week and week off or do nothing. She has bad pain she said she is sure that is arthritis and not Cancer. the lungs she said she is not convinced it is cancer. Even though there are more tiny nosules on the right lung as well.
My mom decided to do taxol.
I want to know if this is the standard for stage 4.
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Hello, coni. I'm sorry to hear of your mom's diagnosis. It is scary. Once she settles into treatment, you will probably both feel calmer. I'm a little confused about the treatment options you mentioned. Did you leave some words out? Maybe it was hormonal therapy, or taxol (cycles of three weeks on, one week off) or nothing? What did the doctor recommend as the best approach for your mom? Is your mom satisfied with the plan? I had extensive hormone-positive breast cancer liver mets that needed fast treatment, and my onc said taxol was the best thing for it in my case. In other cases, people can start with hormone therapy, because although it can take longer to work, it has fewer side effects than chemo. The plan has to be individualized for the person.
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hello Shetland Pony, I guess my phone was acting up.
Yes, her chooses were, Hormonal therapy, chemo or do nothing. She was more keen on the hormonal, but we are freaking out, so she choosed chemo. onc csaid that the mets were small, but in three months there is a 1.4 cm, 1.0 cm and 8 mm and maybe a 6mm. Plus the lungs, onc says she is not concerned, however she started with 6 noduler on the left lung now the right lung has a few too. I don think they have grown a lot, that's why she thinks is not cancer.
I hope that taxol is not too hard for her, she said it was much better since is giving in lower doses.
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Yes, the 3 weeks on, 1 week off plan is supposed to be easier than the other way. Personally, I found it very do-able. Here is a link to the Weekly Taxol for Stage iv thread in case you two want to read and/or join it.
https://community.breastcancer.org/forum/8/topics/...
It wouldn't hurt to get a second opinion, and to ask if a PET scan and/or bone scan would be appropriate to get more information about the lesions/nodules and the pain.
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hello,
Thank-you for the supportive responces the first & second time. I thought I would be on here 3 times a day, but the Taxatere is kicking me down, and I am dealing with telling friends family.
I have lots of ?, hopefully tomorrow I will feel up to being nosy, asking "what if"......
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I did ask, we live in Canada. They don't "believe" pet scan makes a big difference. The feeling we got was, well once is stage 4 there really isn't much left, but only treat it. Where is the hope? I mean yeah I know it's stage 4, but there have been miracles. She said people can live with it for a long time, but at the same time I got the feeling of well there is not much we can do.
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coni- Ive been stage for for over 3 years. I have seen people post of being stage for for over 10. don't give up hope. Take it one day at a time. There are lots of options (some with better SE than others) but you can live with stage 4 for a long time.
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leftfootforward, thank your for you words of encouragement. I want to ask. Is 1.4cm and 1.0 and 8mm big? The doctors seems calm, but everyone one else tells me that's big.
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No, that is not big. I had 2 liver mets that were 11 cm and 4 cm. it is almost 6 years later and I am doing well.
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coni
My liver was full of small ones and one larger lesion 4.5 X 4.9. Five months of gemzar brought it down 50%. The thing is we will respond to one treatment and then maybe not another one. Or stuff will shrink then over time get bigger then with new treatment shrink again. I think that is the hard part. I don't get " too happy " on good news and I don't allow myself to be "devastated " on not good news. Stay stable and now things can change depending on response to Tx.
I'm 3 years and 8 months out. You can live with cancer for a long time. That's my plan for myself.
Best
Diana
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thank you Diana. This means so much to me and my family. I will let my mom know
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came to this discussion after a long time (yes to me, its a long time) with tears in my eyes and ache in my heart. a loved one of mine (yes, love of my life) who is a surgeon told me today that I should ENJOY my SHORT life because I don't have much time left and he has never seen any stage 4 who survived. OK, I mean I know I am going to die but hearing that from someone I love was a punch in stomach. I have been to TNBC boards as well but never find a woman in my situation.
what a bad day today. I was having stomach issues and a little bit liver pain and I was freaking out if its mets growing or chemo working. it made me bang my head against the wall. 3rd chemo on March 25..desperately need support and words from you ladies.
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I don't post on this thread Maryk, so first of all nice to "meet you". I've had liver mets for seven years. I was originally diagnosed stage 3 in 1996 and mets to bone in 2006...liver 2009 and many more since then. There IS lots of hope. I just had to jump in and say that's a helluva way for someone to show their love making a comment like that. Not for me to judge, but I certainly would disregard that comment. A surgeon, of all people, should know better. If you read the Stage IV boards thoroughly, you'll see there are many, many more who've been living with bone/liver mets for years.
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Also, your signature line is no way to live this soon after your diagnosis. I hope you don't believe it. For all anyone knows, you could go into remission for years. I'm really quite angry that a loved one said that to you. I can't even imagine what the motive could be, but it sucks.
How 'bout you change it to "I'm going to live so dying will have to wait". Just a friendly suggestion. Attitude plays a big part in this disease.
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thank you so much leggo for jumping in...I so desperately needed to see someone who has actually survived stage four and im counting the years you survived and smiling and wiping my tears
. THANKS indeed for your comforting words. he wanted to go for movie with me but I was not feeling well due to these darn stomach issues. plus I was thinking about my 3rd chemo coming march 25 and 5 days of constant pain after that. with a stage 4 diagnosis, every pain, every ache feels like cancer is progressing so ignoring that and enjoying life is really hard. but again Im glad I posted it here though I was thinking it is not the right place I should post something like that. don't know much about the site -
Maryk, liver mets hurt, no doubt about it. Just also want to make you aware they hurt when they're healing too. I'd like to think that's the reason you're pain has increased....treatment killing off those cells. Could be, right? Go with that, until you find out differently. Hugs.
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MaryK, I hope he didn't say that because he was miffed that you weren't up to doing what he wanted you to do. Perhaps he meant well, but you shouldn't be pressured into feeling any particular way. You are newly diagnosed and going through the grief and trauma of that. Here is a thread you may want to read:
Tips for fighting the dark clouds
https://community.breastcancer.org/forum/8/topics/...
And leggo is right. The chemo working could cause pain.
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MaryK87- we are all here for you. my liver was full of mets and then medicine got me to NED. I had a single liver tumor resected in July. since then doing great. 3+ years and still around. I also had brain mets so a combination most people are afraid of. I just keep living life. Sorry that the treatment has you not feeling well. I might talk to your doctor about it, as there might be something they can do for you.
come here anytime for support
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Yes, yes. We are here for you, MaryK. I gave you a link to a helpful thread but I hope you didn't take it to mean you were in the wrong place here on the liver mets thread!
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MaryK,
I cannot believe someone who care about you is able to be so mean at a time when you need his support the most. I hope you do not let this comment get to you. You are newly diagnosed and this is overwhelming for you it is understandable. But you may to relate to him, that MANY ladies are living with a stage IV and many other have lived with it for years. I am stage IV since 2014. I had more than 15 tumors in my liver both lobes and multiple bone mets on most of my skeleton , i have been with no evidence of disease since a year and a half. Two treatments before failed and one worked. Also it is true that sometimes mets hurt but others like Shetland said they hurt when they are healing and the cells are dying , they hurt just as much. Think about it this way . Please, do not listen to anyone , learn to listen to your body and do not think that every pain is cancer just because you have cancer. Other things hurt too and treatments hurt also. Keep in mind there are some ladies who have been living with the disease for 25 years other for 15 and other and others. Positive thinking is part of the treatment and so is faith and belief in yourself unless you have a reason to believe otherwise do not be afraid.
I am really insulted by your friends words and it made me angry but I hope you rise above this and beat the disease , this way you make him swallow his words.
We are here for you anytime. Hugs
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Well said Diana , i always loved your spunk. Not today cancer
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Holeinone- sorry that you had to join us here and that so many of us missed your original post. You will find the women here a wonderful group-they are so very supportive and helpful!. Just hang in with us!
Babs
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"tell the loved one" to take a hike.. I was dx'd in Dec of 13 with stage 4. Not really that long but there was metastasis to bone and in the interim to the liver. not just a little bit either..The astonishing thing is that I am still going strong. I am going to my 10th session of IV taxol and IV her cep tin tomorrow. I travel and work and stay up to date on many things. I am not in denial but I would state that no one knows how long each person has to live. My life is currently full of joy; however, I know that time will change that level of wellness/. Who knows maybe there will be a treatment that pushes the old expectancies out further. Seek out hope and seek out the best you can make out of a reality that none of us volunteered for. Carolyn from Music City
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I was diagnosed with Stage IV, mets to liver and bones, given 11/2 to 3 years to live. That was over 9 years ago.
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Cnanthia- love to hear that!!!!! Hope you're here for many many more years!
Babs -
Holeinone, I do hope you feel better and my thoughts are with you as you navigate communicating to friend and family, one of the first and toughest things we must do. You take me back as I remember puzzling over that one. Please do ask away with your questions when the time is right. There is not nosy here.
MaryK, that comment is a wow! A big downer when hope is such a better choice. But I also think our loved ones go through their own kind of shock and don't always say the best things. My husband made a killer off color joke to me and b/c I love him dearly I won't repeat lest you think wrongly ill of him. I was hurt and livid but forgive him.
For me and I think for you too being trip/neg adds extra worry. I hear great stories of women living many years and I am glad to hear it but always checking for the three negs in their signature. I also, like you, try to find people in the most similar situation to compare myself to and for you and me trip/neg with extensive liver mets is a big part. My cancer also spread so quickly (just one year after stage 1a dx) that it adds to my fear. All this leads up to my telling you (and hopefully not scaring you) that I am okay and I am hopeful AND I did find a gal whose liver mets weren't as extensive and who is BRC1 pos. (unlike me) BUT she was 7 years out from her stage iv dx in November. I think of her a lot. We all respond differently and you have no reason to believe your response won't be fantastic.
Coni, I think those liver mets are small given I felt just swell with no idea of the cancer growing in my dear liver until I had two 10 cm tumors and too many others to count. Chemo is still doing its job to shrink, shrink, shrink...8 months later.
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maryK87- I'm sorry for that comment that was made to you; however no one knows when our time in this earth will end. Dont pay attention to comments like that. negative people like to make everyone else feels down, you cannot allow that. I know is hard, I'm also a survivor I was 31 and I remember my onc radiologist telling me I only had 50% of 5 year survivor, I remember going home and crying. I told my onc, he was so sweet and told me not to pay attention to that, I need to concentrate on being healthy, on doing everything I can, because I was not a number. That gave me hope. So, seeing all this wonderful women fighting and being here for years, you will be just the same. Faith moves mountains!! you will be in prayers, you stay with a positive attitude, and stay away from all the negative. Everyone's life is too short to pay attention to people like that. If he was trying to make you feel guilty or if he wanted to movitivate you to go out, that was the wrong approach SPECIALLY coming from a surgeon. He, must have though that coming from him, you would believe it. Show him wrong!
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Maryk,
I've been stage IV for almot 7 years now. I was stable for 5 and last year got a pituitary tumor & lots of liver mets. Had to go back to chemo. Originally, I was given upto 2 years.
Best wishes on your treatment.
Terri
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Mary, I concur with all these women. I am only 8 months out with liver mets but my treatment right now is working. I have shown small steady improvement after 2 1/2 months on it. And yes, like leggo said, I still get twinges and little stabbing sensations in my ribs. Dying tumors sounds very logical to me! There are women on here who have are in a way worse situation right now than me that are doing well. I find a lot of hope in that. After reading kaayborg's post maybe you should tell your Love of Life how crushed you were by that and if he cannot support you in a positive way to keep it to himself. (and direct him to this site) kaayborg also had a point about your triple neg adding extra worry, but we ARE all unique in our response to treatment. I too feel extra worry because of ILC so hunt for other Dx lines with the same for encouragement. Woody and Shetland, the small issue my Onc mentioned is inflammation of my thyroid, possibly Hashimoto's thyroiditis. Otherwise the news was good, a lot of decreased SUV uptake. Thanks ibc, leftfoot and cnanthia for the good news! Diana, sounds like you are feeling better?
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Nice to have all of your support.
I learned in the last page, liver mets hurt, growing & shrinking. Whew, I already was hoping I was hypochondriac. That seemed much more appealing.I am in a fair amount of pain & I am taking OxyContin. Hate pain meds, but I need them now.
For those that were dx straight out the gate, Sorry.
I am on Taxatere, by itself, every 21 days. Not real thrilled with week 1. Hair loss ?
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Holeinone and MaryK, you are at the start of a massive learning journey. In a few weeks you will know almost as much as your docs about stage four. When I was first diagnosed I was all over the Internet trying to learn as much as I could and only ended up confused, overwhelmed and in despair at some of the (very out of date) statistics. However your best advocates are the ones on here that are going through it and that you can relate to you. I'm sure like me you will learn so much and feel energised at the positive stories and support you'll get. It's. It's not easy but I promise you it will get better over the next few weeks and months. Life goes on just in a different direction. All the best to you,
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Hi ladies, just wanted to pop in and check on everyone. Mary, I was so mad reading what was said to you. But I think everyone reacts to this dx differently. I don't know about you ladies, but I have seen an interesting shift in my support group. My sister has been my best friend for years, ,my cheerleader during IVF treatments and by my side through babies, but recently, no where to be seen, hard to get a hold of, as is my dad. My mom says they just can't deal, don't know what to say or how to react. Then I have had casual friends step forth and be my biggest support. The hubby is in total denial, won't even discuss the what if's. I would talk to your loved one and explain the hurtful comment and be honest with how it made you feel, if he loves you, he won't want to be the person causing you pain. But be clear, mean comments are unacceptable! Holeinone, welcome and sorry to meet like this lol. I am only 7 months in from dx, so I don't have much to offer but that things have a way of making themselves feel like a new normal and things seem to calm down a bit, for longer periods of time. Love and hugs to all you ladies!!
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Hi Mary K.,
Your loved one is scared and has limited life experience of what's possible with mets. He's projected that on you (you're going to die on him) and infected you with his fear. Only love can overcome fear. Sometimes there's a long distance between the two, sometimes they are close enough to touch.
Mary, I hope you'll take strength from our stories (I've been living with liver mets for over 2 years, pleural mets for 8, lung for over 16 and regional for 25).
May we strengthen you, so you can respond with love to the love of your life! May you return from fear to love together!
Mary, I'm reminded of this great article...maybe it could encourage him to be more conscious of what he says and its negative impact on your ability to survive and thrive).
How not to say the wrong thing: It works in all kinds of crises -- medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.
Nobody knows for certain how long anyone has to live or how well they'll do with any life challenge. For him to give you a death sentence is as uncertain as for us to tell you that you'll live a long, long time.
Living with uncertainty may be among life's greatest challenges - and cancer certainly multiplies uncertainty.
>came to this discussion after a long time (yes to me, its a long time) with tears in my eyes and ache in my heart. a loved one of mine (yes, love of my life) who is a surgeon told me today that I should ENJOY my SHORT life because I don't have much time left and he has never seen any stage 4 who survived. OK, I mean I know I am going to die but hearing that from someone I love was a punch in stomach. I have been to TNBC boards as well but never find a woman in my situation.<
warmest healing wishes, Stephanie
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*waves* Hi there. I'm new here.
I'm still trying to figure out the signature goodies, but I'm triple negative with what looks to be mets to my liver. Just biopsied the one hot spot lymph node bunch they could reach under my left collarbone this morning. I'm glad it was there, because the other stuff is in the middle of my liver and they didn't seem too excited to try and sample that.
I have lots of questions, but mostly I just like seeing that you guys are hanging in and fighting. I'm young (for breast cancer
) and I'm a single parent to a lovely 12 year old daughter I fully intend to see grow up.My first question is: if you were just starting at the beginning of the journey, what are the most important things to know?
I meet with my MO Thursday and I want to be prepared!
Thanks!
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For the newbies or those who are scared, just keep in mind, you only need 10% of your liver to function. I have posted this stat before but wanted to post it again as it always makes me feel better when I am scared. One of my doctors told me this early on in my journey.
It is amazing how many new treatments come out each year. There are many promising therapies in the pipeline, including various immunotherapies and new mechanisms to deliver current drugs more effectively and in ways that combat previous resistance. I feel very hopeful and am just trying to make it through on the therapies out there now until the next one comes out.
Despite having a staggering proportion of my liver replaced by mets right now, my quality of life is amazing. I am working full time, plan to run 4 miles tonight and then eat dinner with my husband and little baby. Very little has changed day to day since my diagnosis, despite my recent liver mets progression (aka explosion. I am going to continue to "live big" until my body tells me otherwise. I feel great.
Please don't give up hope!
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Welcome, Mattie. To me the important things are to go to the best cancer center you can, and to find an oncologist you like and trust.
Also set up the support you need. This can include an online group like this one, an in-person group, a therapist or social worker with oncology experience, kind and helpful friends, family, and neighbors, a house cleaner, a restorative yoga class, an exercise buddy. Be realistic in your expectations of yourself if you are tired, and be kind to yourself.
For the visit with the onc, have your list of questions written down, and consider taking someone with you to help process the information. Ask how to contact the onc if you think of a question after the visit.
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welcome Mattie,
I am about 2 weeks ahead of you. I had/have strong pain in my liver. Is that what got you started ?
I had been preparing mentally & emotionally since I had my lumpectomy, that stage 4 was in my near future. They were looking for mets then. My nodes were matted, burst open, Cancer growing on the outside. It's called extranodal extension.
My MO told me about the pathology, same as before. She talked about trying this chemo, decide after 2-3 treatments if we should continue. All my tests, ultrasound, CT scan, liver biopsy & blood are online. That makes it easier.
I wish I had asked more, but it's a wait & see nightmare.....
I read some of my texts, they ramble, hop around. I feel like I lost another chunk of IQ pts. The chemo the first go around took plenty...... So please excuse my poor writing
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Thanks guys!
Shetland, excellent points! I've got most of my support team left from the first go, but it looks like this will be a marathon and not a sprint.
Holeinone, that was me exactly! Pain in my abdomen for 2 weeks, meeting with my excellent GP, ultrasound, X-rays, trip to ER with what I was sure was gall bladder attack.
Then CTs and a PET scan later and it looks like it is back. 😱
Last time it felt manageable because there were a set number of treatments. Now, I'm just trying to think of it as any other chronic condition like diabetes or high blood pressure. And I feel silly because my biggest worry SHOULD be survival, but I find myself thinking "Man, I really like having eyebrows and eyelashes again" "Chemo made food taste so bad last time. Does this mean I'll never really enjoy another meal again?"
And I feel like I failed my survival. And sentinel node was clean, darn it! How did those little boogers get all the way down to the liver.
And I hurt. I just want to wake up and this all be a horrible nightmare
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JFL,You are my new hero! Thanks so much. I needed this
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hi ladies, well my mom just had her first chemo today. Benadryl got her drowsy, I am hoping she will tolerate it better than taxotere.
It has brought back so much memories, having gone through treatments myself. I feel this fear, of all the side effects. Of course I can't share that with her. I want to focus on positive outcome, praying that the side effects won't be as bad.
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Mary, Mattie and Holeinone
I very close friend of mine was told that he had 3-6 mos at most to live about 17+ years ago. (yes, it was a different kind of cancer but this story applies to any and all cancers) None of us have a crystal ball. We could get hit by a car tomorrow. But, being stage iv makes us way more aware of our mortality. So, live and enjoy your life. Try not to get bogged down with what's going on with you. Find what you love and make sure to do/enjoy it. For me, spending time with those I love is what brings me the most joy. To that end, I moved closer to my DD and visit my parents in Fla more often. I try to live my life as "normally" as I can. I'm working f/t and enjoying living in NYC now. Years ago, stage iv was a death sentence-it no longer is. Now, with all the therapies and treatments out there we can live our lives. Some txts will work and others won't. A good friend who's in ca research tells me that every year new treatments come out and because of this hopefully, I'll live long enough to get the txtment that will knock my mets to NED for a very long time.
Make sure you have a great support system. You'll find the women here a great source of support and information. There will be those who say stupid things to you- mainly out of fear (Mary K I think that's why your love said what he did) You need to educate them and to tell them how what they said makes you feel because the last thing anyone really wants to do is to hurt or to upset you.
You will have times when your mind goes to that "dark" place-it does with all of us. But, let it out and then get into your fight mode to deal with the next situation that comes up.
I wish your treatments bring you to to NED sooner rather than later!
Babs
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Mattiefang-
I would want to know what the specific type of my new metastatic tumor was( they can change type some to Her2+ allowing for different treatment options)
If they found a met in my lymph and liver, I would have them check my brain as well. And if I hadn't had a full body CT to check my bones and lungs I would ask for that as well.
I would want to know what their first choice of treatment was. And then I would ask what the alternatives were. I would ask them why they chose the first line vs. the second line of treatment. I like to know my options and the reasons behind their recommendations
I would ask about the side effects of the proposed treatments and the best ways to deal with them
I would ask about any clinical trials that might be available for my treatment and if so what they entail.
I would ask about nutrition and dietary restrictions. And would ask about any supplementation that might be beneficial. Ask if they have a recommendation for a nutritionist.
I would ask if there were any restrictions while taking the treatment they recommended.
I would ask about how tired I will be while undergoing treatment and if I need to get help
those are the first things that come to mind. I am sure others will have some things to add to the list.
Good luck
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So big bummer of a day for me. Went to get my Herceptin treatment today. Once I was there, I was told that I couldn't get one. My heart function was too low. I wasn't quite expecting that. The nurse found my oncologist to double check and the oncologist hadn't realized I was due for treatment today. She said that I had to skip this dose and get a repeat echo in 3 weeks. She is hopeful my heart will bounce back after missing only one dose. so it was no go for me today. bummer. Here is to hoping she is right
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leftfootforward , I'm sure you will bounce right back.
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Welcome to the newbies, sorry to meet you here, but this is a good group, I have found lots of support here.
JFL, thank you for that statistic, I really needed that!
Left, so sorry to hear this, I know you must be disappointed, but I bet missing one will get you right back to ready for next treatment!
love and hugs to all, Alissa
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hi all!
I can't reply to all posts because if I do there wont be any place for others (lol). But I want to say Thank You to all my heroes..yes! You all are my heroes.
I was hurt so much but could not hate him though I feel I should have...some of you so rightfully commented that not all people around us can understand the physical and psychological battle we are fighting. I came to this site because i had no support nothing from my family because they are in a total denial that I have incurable cancer now. I have no history of any type of cancer in my family...that might be the reason they ate behaving like that. one of my friend is a survivor of BC but as soon as she heard about my diagnosis, she started crying like nuts saying "how God could do that to you?" and I had to crack some nonsense jokes to make her smile. Huh! Enough drama
the support I found here has literally saved me from dying mentally before physics death. ❤❤❤ praying you all achieve a never ending NED
mattie and holeinone! I never had pain or any other symptom from my liver mets but after two rounds of chemo and duh! My liver hurts like hell. How are you doing on chemo? Has your pain subsided or lessened?
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leftfootforward!
I m sure your heart is as strong as your will to fight this disease..so it Will bounce back for sure. Hugs
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Left,
I am sorry you did not get your herceptin today, but your heart is also important and it will bounce back if you skip one infusion. Mine did. Enjoy the break and get your heart healthy and going.
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left
I get your disappointment. I haven had my chemo for 4 weeks b/c of pneumonia. I understand why b/c don't want to cause another problem. But missing treatment scares me b/c I can just imagine cancer cells saying. ". Oh. Great. No chemo. "Let's go after Diana's liver. " ha. I'm sure it doesn't happen that fast but in my mind I hate delays like this. Boo.
Our heart and lungs need to work for us. Complications can take your life but once you get cleared you'll be back at it. It takes more then missing a treatment to bring us down. So hang in. 💪
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MaryK87, I'm so sorry the folks closest to you in real life are having such a hard time giving you what you need right now. I hope they quickly find a way to support you. One thing that has been working for me is to just tell me peeps how i need them to respond. The other night I was feeling the need to just vent about how I felt and I really just needed my mom to validate my feelings and not try to be encouraging. So I told her and she was great about saying "Yes, this is rotten. I think I would feel the same way if it were me." instead of pointing out that there is quite a bit of hope. That is just what I needed at that time. But, she has had the benefit of walking this road with me before, so it may just take your folks some time.
And surgeon sweetie, deserved a "Really?" with the most massive side eye ever. However, as previously mentioned, fear makes people totally lose their filter sometimes.
Leftfoot, sending strong heart vibes your way. "2, 4, 6, 8! Who do we appreciate? Leftfoot heart! Leftfoot heart! Go Leftfoot heart! Pump that blood! Push those meds! Kick that cancer in the head!"
Coni, I can imagine that being back in the chemo room must bring back a lot of unpleasant memories. Sometimes, just the smell of rubbing alcohol is enough to make me wince. You are very brave and strong to walk this road with your mom. big hugs!
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Leftfoot. I understand your disappointment but sometimes taking a pass is best for the total outcome!
Babs
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It looks like we all get worried when we have to take extra time off. But we have to stay as healthy as we can. Mattie, great cheer for leftfoot!
Regarding what you said in an earlier post, Mattie, yes exactly, a marathon not a sprint. When the extensive liver mets were diagnosed and I needed taxol, my family and I went into dealing-with-a-crisis mode. It was after that chemo was over that it got really difficult to deal with emotionally, when it sank in that I would always be on some sort of treatment and had lost the future I thought I would have. With the help of my therapist and this group I got a handle on that. The difficult thing now is that hubby and I are both tired from the marathon, so neither of us can step in and take up the slack like we would do under normal circumstances. This is supposed to be called the new normal but it is the new weird. You did not fail anything; the treatment failed you. I really get that wth feeling. I was stage 1 grade 1, did everything recommended and all the other healthy things too, yet here I am. Everyone thought it must be my gallbladder. And yes, we want not just life, but quality of life, including having hair and enjoying food if possible. I look for whatever happiness or enjoyment is available to me, and grab it, and that is how I thumb my nose at cancer.
That's a good list, leftfoot.
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To all newbies welcome, and i am sorry we meet here. I hope you all find comfort and support in our group who is a wonderful one filled with care , compassion and wonderful advice.
I just want to give you hope with good news of my own. Today i had my CT/PET scan results are still NED . i would have passed 1 year and 5 months of NED and pray and hope for more.
Keep in mind with this disease everything is possible, it is not easy but doable to have a good quality of life . Even when you are TNBC still NED is possible and i wish it for you all.
Leftfoot, very good questions and list
Mattiefang and Maryk , people react differently to cancer news , give them some time to assimilate the news and to learn how to deal and live with and become supportive. Sometimes you will have people around you act like there is nothing wrong with you and it will infuriate you and others will think this is the end and depress you. Speak your mind kindly, because they simply don't get it.
Wishing you all the best results and hopefully NED .
Loads of love to all of you
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YES!!! Great news, Woody! Happy!
Wise words about people's reactions. I suspect they think we are either cured or dying, and don't understand that so many of us are simply living with cancer. Emphasis on the word "living".
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Excellent news Woody! That does give me hope
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Woody
Love the good news, thanks for sharing.
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Woody-such great news- so happy to hear it!!!!!
Happy dance time!
Babs
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Great News Woody!!!!!!!!!!!! Enjoy the day!
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Woody, that is fantastic! Makes my heart happy! Enjoy a wonderful Spring beginning....WhoopWhoop! Thanks JFL, I never get tired of the good news for sure. And babs, I love your outlook. leftfoot, I know how disappointing that is and now more waiting. When I was taken of the Femara/Ibrance combo I had to wait almost 8 weeks to restart something and I was soooo nervous. But I guess I had residual in my system as my TM's continued down and my scans showed improvement anyway. So try not to get too worried. I think it will be a good thing like what happened with Woody. Diana, Just repeat your motto to your liver, "Not today cancer, nope."
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Shetland, Mattiefang, oriole, holeinone, babs thank you all for your happy dance ! Hoping i will dance it very soon to each and everyone of you . ((HUGS)).
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great news Woody. Happy dancing from down under too!
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Woodylb......I am so happy to see your good news! Celebrating with you and for you!
judy
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Thank you dear Isy I specially like the dance from down under lolll! It is special:) i hope you are doing well . Hugs.
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Ya Woody!
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Thank you left hoping we both bounce back in the heart matter
i will know Monday . Hugs -
yayyyy! im so happy for you woody!
i have just done some GANGNAM dance for you. your words always touch my heart and I feel all alive and hopeful again...
Mattie, I gave him the most massive side eye but I was crying inside...woody is right we should give them time to assimilate the news. we both are newbies and I am very hopeful that someday, we will be supporting others just like these wonderful ladies have supported us.
hugs and love to all
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I had a really encouraging meeting with my new oncologist this morning. The only downside was that my pathology report was not back and so we could not make treatment choices. I hope to do that tomorrow over the phone.
I'm telling my 12 yro daughter tonight. She knows I have been to testing and she remembers the cancer from last time. I'll emphasize that my doc says the treatment will not be as harsh as the dose dense chemo and that it's going to be a lot like managing diabetes, something I'll be doing for the rest of my life
I spoke with her therapist this afternoon and he gave me some great talking points. I feel better knowing he is there for her as well.
Mary, like you I look forward to becoming an "oldie" on this forum! We can do it
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Mattie, glad your appt. went well and thinking of you as you talk to your daughter tonight. I have a 12 year old daughter as well. I would love if you have time to share those recommended talking points. I still struggle with knowing what to say to my kids. I haven't said more than that I will have to be treated for cancer for the rest of my life. Sometimes I worry about her harboring fears on her own because I don't say more but I also don't want to cause her extra worry. She is my oldest.
Yay, Woodylb! I know there many other things I wished to reply to on this thread but things around here are turning to busy, busy, well, busier than normal so know I'm reading and rejoicing and caring even if I don't post much in the coming days. And seriously, does any one else have the terrible chemo-brain problem of constantly thinking one word but then rereading and noticing you've typed a completely different word? This has been trying me crazy lately. First in speech but now in writing.
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MaryK,
Thank you so much for you lovely dance , i hope i will do the same one for you soon 🙏
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MattieFang,
I am happy you feel better after you spoke to your onc. I feel for you telling your daughter , my son was 15 when i had my first dx and he was near me when my doctor called, so i could not lie . He was utterly devastated and he totally disconnected himself emotionally. Now he is seeing a psychologist to help him and teach how to feel again and deal with realities and he is 20. I am glad you have a professional advising you on how to tell her. My thoughts are with you.
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Kaayborg,
Thank you so much for your encouragement and genuine response. Wishing you wonderful results soon.
About chemo brain, please do not worry , we all have it. Taxotere cause me speech problems , carboplatine also , the rest neuropathy and the forgetfulness is normal . Now perjeta is causing a lot of neuropathy , if you notice in my psots alot of mistakes my fingers are stiff and they do not always hit the right key lollll.
I am much older than you but my memory was my strength , well not now. But i practice a lot of memory games to keep it working and i am doing better but the chemo brain , well it is better but not totally gone.
I use a game called peak it has a lot of brain activities exercises , mental agility, focus, memory, emotions , language and it works.
I hope you lovely new ladies will be around for alongtime to support others
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Congrats on the wonderful news Woody!!!!
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My talk with my daughter went really well. I think it helped her to remember how many people had helped us the first time around. She did ask if I was going to die and I told her what my oncologist said; that this is a very treatable disease and that new things are being found all the time.
Her therapist said that she might have lots of questions and that she would benefit from having those answered honestly. He said to remind her that the cancer won't ever stop me from being her mom and that I'll still be doing mom things, like decision making and caring for her. I might feel like bringing in some outside help for stuff at times, but I'm still the parent. He also said she would likely key off of me and that it is ok for me to show her when I feel sad, scared or angry, but I also need to show her how to deal with those feelings by not wallowing in them and by moving ahead. I have my own therapist and it's very likely I'll be meeting with her soon to get more ideas
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Thank you Mama2twins, wishing all of us the same and better .
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Mattie, i am so glad you were able to tell your daughter about uour disease , it is really the hardest thing to do. I hope you and her nave a very very long time together.
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kaayborg! i am here with the same issue...chemo brain...This is very embarrassing because i have to edit or explain the other person that its a mistake. my sisters call me "dory" from the upcoming cartoon movie "finding dory" because she is so unforgettable that she forgets what she was talking about during her conversation with her bff.
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Mattie, good job having the courage to be honest with your DD.
I saw the nurse prac. Yesterday. She said my liver numbers were down, since my chemo 10 days ago. Good news !!!!! She did explain how Taxatere causes fatigue, like no other. I still have liver pain, do not want to take pain pills, but cannot handle life without them right now. My hair is falling out, head is sore.
Did any of you get Taxatere, and your hair only thinned?
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Way to go Hole! So glad to hear the liver numbers are heading in the right direction. Sorry though about the continued liver pain, scalp pain and hair loss. That is rotten.
Take the pain pills. I figure we have plenty of time to be brave later. For now, I'm going to fully embrace any and all pain relief that comes my way!
MaryK87, I hear you on the chemobrain. Another thing I'm not looking forward to revisiting. Last time I carried a little notepad with me and wrote down what needed to be done and what conversations I needed to have with whom. I checked things off as I did them and wrote down information from other people. It was a pain in the butt, though.
And as Dory says "Keep on swimming, keep on swimming, what do we do? We swim, swim, swim."
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Mattie, thanks for the reply. Do you know yet about treatment choices?
This might be a stupid ?, but here goes. If the chemo is working, will the liver shrink back down, closer to normal?
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Hole, that is my understanding. You shrink the mets, you shrink the liver and stuff stops pressing where it shouldn't. I could be wrong about that.
I just heard from my MO this afternoon. The ER & PR are still negative. I'll know about HER2 on Tuesday. My doc thinks that will likely be negative as well. Assuming that is the case, he recommends Abraxane + immunotherapy in a clinical trial. I'm going to be researching the immunotherapy piece this weekend. It's a randomized study, so there is a 50-50 shot on getting the immunotherapy. Unless I just don't like what I see on the Internet, I think I'll go for it.
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Matie - There is a woman named Coopdizzle (actually, her name is Jen) who has a YouTube channel where she talks about living with Stage IV mets. She features her kids in some of her videos, and always reminds them that if there comes a time when she is not around for them, it is not because she did not want to be. You might want to see some of her videos here:
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Hole- so happy the numbers are going in the right direction already!
Mattie-so glad the talk with your DD went to well-telling those we love is the hardest part of this whole mess were in!!!!
Wishing everyone a wonderful weekend,
Babs
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Holeinone,
Wonderful news after 10 days ! Yayyyy! I hope the numbers keep plummeting. I got taxotere on my first dx, my hair had already fallen from the first two and my head hurt when it started to fall. I did not wait for it to fall completly , i shaved it and it helped. Chemo does not shrink the liver it shrinks the mets , once the tumors shrink if your liver is enlarged , it will go back to its normal size. However, the pain may not be the same pain you felt before chemo, it could be from the treatment. Since your numbers are down it could be that the cancer is dying and when it dies it hurts. It is a sign that the treatment may be working and the dying cells hurt. Wishing you more and more decrease in numbers .
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Scrunch, thanks. I'll defiantly check those videos out.
Woody, if only the stupid cancer cells felt the pain instead of us! But that is good to know
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lollll Matty i agree with youbut they don't they are stupid as you said !
) Abraxane is a good option , there is a lot of talk about imunotherapy , two of them will be FDA approved by the end of 2016 beginning 2017. Like you said check them out and go with your guts. Good luck to you and we will be here to cheer good for a good response. -
Mattie, that sounds like a very good plan, to do abraxane and a trial that will possibly give you immunotherapy. A trial is the only way to get it at this time, right?
Holeinone, I would expect your pain to subside as the Taxotere does its job. I recommend a good-quality silk pillowcase for the poor tender head.
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hi ladies!
hope we all keep on swimming. but I can hardly swim at the moment. had my third carbo taxol dose yesterday and today down with breathlessness and extreme weakness. I was anemic already and had the heaviest periods of my life a week earlier (my periods have not stopped on chemo). my liver numbers are perfect despite the vague pain in the liver area. anyone of you felt this sick on carbo taxol?
hugs
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Hang in there, Mary. I'm praying for you. Hoping that cause of the pain is the cancer dying in droves. Just rest and call your doc. They live for calls on Saturdays
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Mary,
Sorry you are struggling right now. I get really sick after chemo, but have not experienced carbo. Time to try to get comfy and float. Sleep, fluids & time.
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mattie! i called my onco and she replied like Frankenstein "side effects of CHEMO" and BANG! phone was off
huh! well i ate what came into my sight and feeling better now lol.
Holeinone! thanks and have you tried pomegranate juice on your "sick days"? just a suggestion. it helps tremendously with weakness and nausea. so happy for your liver numbers going down and pray they go back at normal level soon.
big hugs to all ladies
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hi all. Well 3 more treatments left. I feel worse after each one. Liver enzymes are up and down, waiting on markers. They were at 1600 then down to 196 hoping for lower this time. This stuff makes me feel so yucky. I can't wait to be done! anyone do any juicing? Maybe that will build up my defenses and I'll feel better. I just want my hair back. Next scan in April. Might end up doing liver embolization. Hopefully that will help. What good things can we do to help keep liver healthy and fighting?
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Hi lvinAZ44
im glad your TMs are going down with each treatment, we are in the same boat with same diagnosis and 3 treatments left. like you i feel worse after each treatment but the side effects worth it if we reach NED status in the end. I have just shared my defense against horrible side effects of chemo. I drink pomegranate juice everyday after chemo and it makes me feel better plus i have read that pomegranate have anti cancer properties so I asked my onco and she Okayed it. drink plenty of water. my liver enzymes have been in normal range during 3 treatments. i hope it works for you as well.
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MaryK , sorry for the way carbo makes you feel. I had carbo and it also tired me more than any other chemo. Breathlessness also cause by very low blood counts. I had a blood transfusion tobe able to continue and low doses.
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I'm filing away the pomegranate juice tip!
Mary, she's just playing hard to get. Take it to the next level by paging her through the hospital switchboard. Docs aren't allowed to ignore those. It shows you are thinking of her and want her to share in the journey. 😜 And remember, she works for you! Side effects of chemo? Then manage those with something from the bag of tricks, doc! She spent a lot of time in school, residency, etc. You are just giving her a way to show what she knows!
Seriously though, I learned that I had to be my own advocate during my last rodeo. My original MO and I butted heads a little bit at the beginning. Once we had a "Come to Jesus" discussion things got better. No one tells cancer girls what to do! They present us with choices, answer all our questions and offer us fantastic pain meds/anti-nausea meds/compliments on our chemo caps. Or else we climb the chain of command looking for help!
Livin, I'm sorry you feel icky today. But yay for only three more left! That is so awesome. Have you tried CoQ10 for hair? I'm going to ask my doc about it when I start. It also promotes heart health. One of my cancer buddies swore by it helping to regrow her hair. You grow, girl
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holeinone, Mary and lvn, I hope you all are feeling better soon and able to enjoy the upcoming Spring sunshine. I do not look forward to some of the Tx you gals are having to endure but know the time will come. I had an exceptionally bad day today just learning my TM's are going up on Faslodex even though my scans showed stable. Then we found out we owe way more in taxes than we expected. I was really thinking we should get a refund this time and could take a mini vacation but nooooooo! And the capper was that one of the medical groups who bills me sent me to collections for a med bill I had no idea I owed! I have gotten no new statements so thought I was done. I've been paying med bills like a mad woman and have a near perfect credit score. Then Wham! I am needless to say livid and have to wait until Monday to TRY and straighten it out. But looking at the big picture at least I am feeling OK for now. So all the rest I just have to let go.
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artistic, thanks for the support. My Taxatere was 2 weeks ago. ( tomorrow ).So, I am feeling better, but liver is still huge pushing into my inners.
Sorry that you are having a down day. The tumor marker has me confused, although my # 'was huge, which can't be good. How often does your MO do that test ?
When I found out I was stage 4, I immediately took my Roth IRA out. Taking my family for a short trip next weekend to the beach in Calif. Staying at a nice place on the beach.
Hope you get the medical bills figured out & it's not as bad as it could be. Amazing how much we all have to deal with.
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Holeinone, She does my TM's once a month. I was on a high from the scans only to get the Tm news, not tragic but still a downer. I will get a new blood test in two weeks and pray it was a fluke. It's not that bad on most of the bills, but this one radiology place in my town just ticks me off so much. They are extremely quick to demand their money which I have been paying religiouslyj. then I stopped getting any satements so i assumed they were paid. They just seem to want to add to the mental mind bending by shooting it straight to collections when I had no idea I still owed them. I would of happily paid immediately. We are victims so often in this regard. Considering how many different Dr's and procedures and practices are included in my care it is already a second full time job to stay on top of all the paper. I plan to call tomorrow and try and set them straight. Anyway enough of that! I hope the Taxatere shrinks that liver pronto. It must be extremely uncomfortable not to mention disconcerting...
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i will try pomegranate juice. I've never seen it anywhere so have to do some searching. I felt so bad this weekend could barely get up to go to bathroom. Dr supposed to call with markers. Ugh I just want to wake up from this nightmare! I feel like as soon as I stop treatment I still be engulfed in disease. I just want to back up and cry until it's over. I have nothing positive to look forward to. I just wake up everyday and think I'm stage 4 I'm going to die and it's like a punch in the stomach. I'm not brave or positive. My savings is gone, I can barely make it to work. I'm just a hot mess I moved to az last year with my bf, now my family wants me to come home to Ohio but I love my bf and my cats and dog. How can I leave them? I do want to go back home but I want all of us to go. Decisions...
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Livn,
I am so sorry you feel so lousy my heart aches for you. I will not tell you be strong and everything will be ok. We are all in the same boat and it is a hard sail. Stage IV by itself is scary and depressing and each one of us deal with it differently. It is an ongoing daily struggle , sometimes things seem to be normal and other times it does not. It is normal for the meds to tire you and gets you down, plus treatments and cancer are too expensive and causes a lot of people to quit their jobs. But it is menageable , and you will have better days, so please just do not give up on yourself, don't let the damn disease kill you inside before you die. Find strength in people you love, things you like to do, cherish your life. Live day by day and enjoy each moment and you will get by.
There will be days like now , where all will look bleak and useless. But it is not, some people live with satge 4 for a long time, why not think you may be one of them?
It is a tough decision you have to make between your bf and your family. The best would be like you said for you both to move near your family. But this will depend on your bf situation and it is not something you can force on him. If it were me though i would choose to be with my family where i would be surrounded with love and support. I cannot advise you this is your decision to make , but i do hope you make the right decision for you and your health and peace of mind.
My prayers are with you , may you find peace of mind and comfort wherever you go.
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Lvin, more hugs. Cancer sux. And cancer that has gone rogue to the liver sux even more. It isn't fair and it isn't right and I'm sorry it's being such a pain in the rear for you right now.
Hang in there. Flip off the Mets and tell them "not today!"
I think we all get a free pass to cry and scream as much as we want. But, you have a lot of positives going on as well.
You have a family in Ohio who loves you and wants to be there for you. You have a boyfriend who cares about you. You live in Arizona. I've always wanted to visit there. The sky is so blue there and the geology is striking. You have two dogs and two cats who love you as well.
And you ARE brave and positive. You are making it in to work! That is a big deal! That takes a lot of guts!
As far as looking forward to something, it IS almost opening day of baseball season. And the summer Olympics are this year, right? I'm looking forward to finding out what happens there. Heck, we can invent a drinking game where everybody takes a shot of pomegranate juice when a commentator says the word "zika"!
You've got this sister! I have faith in you
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Lvin, My heart hurts for you too. I have been just where you are, have had some pretty bad days and I am barely into the fight yet. I also do not feel very brave at all. So it is hard for me to tell you to try and be strong, think positive blah blah blah......Sometimes it is just not what you want to hear. However, I agree with Woody that you WILL have better days and it is so important for your overall well being to live one day at time and find something positive to focus on. Don't let this damn disease ruin the rest of your time which could be YEARS. As Woody said, "Why not you"? None of us knows how long we my have but I do not want to waste too much of it crying. Mattie is right too that you have a lot going for you, it will all fall into place. You have made it this far which does take a lot of guts! Be kind to yourself, give yourself a break. I hope you find some new reasons to find joy again.....
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So many wonderful women on this board. I'm so grateful. While your messages of hope are meant for specific people, they often apply to and help many more of us, as well. We are not alone.
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there are so many wonderful, supportive Ladies here. Thank you all so much, had a bad day. Was so sick all weekend. You are all great support. Thank you for your support. I wish us all many years!!
Hugs....
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Hi, LvinAZ! Remember when we "met" last fall? We were both first diagnosed in spring 2011, and I said we would have a five-year toast spring 2016. It is certainly not the way we wanted be, being stage iv at the five-year mark, but WE ARE STILL HERE. So, let's toast. Everyone, please raise a glass to LvinAZ, and to all of us. Skol! Cheers! L'Chaim! To Life!
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Cheers! Five years? You guys are my heros!
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Salute
This group is going to be my lifeline for the next few months. I feel the genuine concern & empathy from all. Thanks to you all.
LVinAz, glad you are feeling a little better. Being sick takes us down, sometimes stuck there in the basement.
This stage 4 dx is almost at the one month mark. My DH is a total basket case. He says it should be him. ( he is fairly disabled from disk & bone diease. Extremely arthritic) he wants me to go talk with the lawyer, about our will. He gets way too emotional, I am fairly stoic.
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Hello lovely ladies, we certainly have a good reason to celebrate , we are all still here , with the good and the bad. This is certainly something to celebrate , Shetland, Sandilee, Artist, Mattie , and Livn. So i raise my cup to life and to cancer i say like Diana says " not today cancer , no not today" hugs to all of you lovely ladies.
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Doing a speedy look at the signature lines, we seem to have a fair number of lobular gals here.
LvAZ.......image of what the bottle looks like, at my store it is refrigerated with the salad dressing, in produce
Hope the 2nd image does not offend anyone......night all.
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absolutely love that POM juice! Gives a sweet hit when you need it but you know it's good for you. cranberry juice also does the trick and can bite through that yucky metallic taste you get with chemo.
Lvin your sad post really resonated with me and reminded me of the place where I was a few months ago. I remember thinking my life had ended. I thought I was never going to be happy again, I'd never work again and I'd never travel overseas again. Well I've done all three within six months of diagnosis and there are times when I feel almost 'normal' whatever that is.. I no longer wake up in the morning with my first thought bring cancer.Helped in no small part by everyone on here who just get it and the only ones who can truly understand what's you're going through. Well it's after 6pm here and I reckon a good time to crack open a bottle and raise a glass to all if us, so Cheers, bottoms up
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cheers to 5 years
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first of all CHEERS ladies! I'm in ❤
Lvin! I am feeling exactly the same at the moment....intense pain from taxol and neuslasta shots...plus one of cousins came to see me with her 1 yr old son...we were both supposed to get married in december 2013. But i got cancer at the age of 26 so my fiance left me..she got married and now have a cute baby...and im having cancer baby again in major organs with poorest prognosis...i felt so sad and broken...i realized i am not brave either..i cant fight this disease that has taken beautiful time of life and now im going towards a painful death. The pain i get from taxol for 5 days is UNBEARABLE. But i know if i lose hope each day will become more difficult...i just keep reminding myself..a few more days and i ll be fine...thinking about good keeps the harshness of bad at bay.
these ladies are my support system and i turn to this thread whenever i feel down. ❤❤❤ love to all.
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Holeinone I like the 2nd image of POM juice because it has been my savior through nausea and chemo related anemia. Apple juice and POM juice is what I drink religiously during chemo.
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MaryK- have you taken Claritinfor the neulasta pain? I remember that awful pain from neulasta and Claritin helped. Some providers tell you about it, others don't. Don't know why it helps but it does for a lot of people.
Hang in there.
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Cheers to 5 years! I'll let ya'all know when I hit that mark and we can cheer again! Whoop whoop! Mary, I do hope that you start feeling better soon. I can only imagine how painful and difficult it was to see your cousin married with a baby. But you can fight this disease. You can give it the finger for now and try to find something else that will bring you some happiness and sense of purpose. You don't really want to give up and go down without giving it your all. I believe things will get better. Please hang in there......Hugs back at you Woody!
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Dear Mary,
I don't post very much (do not get so much of a response here :-(, but I read every day and updated on all your ladies progress, worries and results. I cry with you, I cheer for you and pray every day for all of you.
Your story really breaks my heart... see I have a daughter your age...
You got a good, very much needed cheering up here and G-d knows I am with the group, but in addition I want to tell you a story, that I posted here almost a year ago and I want you to see that everything is possible and it can be you in the nearest future. This young woman was holding my hand, saying NEVER give up. You should of see her eyes. Please see below copy/paste
"Hi everyone,
I'm in my doctors office, getting my third chemo. Met a woman who just came for 6 months check up with a new born (!) baby. We got to talking and she told me that she came to my doctor from Sloan Cetering where they basically told her Sorry but Sorry, go on hospice get your affairs in order.... She is stage 4, TN with bone mets now in remission and a month ago she gave birth to a beautiful boy! Is not it amazing?!!! Could not wait to share it with you. Wish you all the same happy story!.."
If you you want to talk to my doctor, PM me, he is wonderful
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Ella,
Thanks for the support & great story. Pop in whenever, we need cheerleaders.
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CT tomorrow. Tumor markers were still high for me last blood draw but only one was out of normal range. I have an echo scheduled for end of next week to see if I can receive Herceprin on the 12th.
So lots of waiting and some anxiety.
Best to everyone
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Left foot try to stay busy so you don't think about everything! Hope the CT goes well and all the other tests!!!
Babs
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Leftfoot, TM's in normal range is still great news. It could be a small flare. Mine rose a little too on the last lab and are kind of far off of normal even though my scans were stable. Good luck on the echo, I hope you can start your new regimen. I despise the anxiety that comes with all this.....Babs ir right, just gotta stay busy to distract the relentless mind warp.
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Left, good luck to you and your scan and hope for good results. Anxiety always comes with it , i know it is hard but try to keep yourself busy. I hope all is well with the heart so you can get your herceptin. Hugs.
Artist good cheers and support for everyone always . Hugs and best wishes to you always.
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Thank you Woody, that made me smile!
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Mary, I am so sad that you are feeling so bad right now. It is all SO unfair and senseless that you or any of us have to deal with this. I hope that soon you will feel better physically, and start to find more joy, even in little things. If the idea of being brave and fighting doesn't describe you right now, that is ok. Sometimes the battle metaphor helps people. But other times we simply endure what we must in order to be here for people we love and to experience what good times we can find. What really bothers me about the battle metaphor is when people say that any cancer patient "lost their battle." Excuse me! It is not a fair fight. To lose implies we did not fight hard enough to win. No! We are victorious every time we face the day, every time we offer love to our fellow human beings.
Ellamilana, it's nice to see you again. Please do jump in whenever you can.
Leftfoot, hoping for a good scan report.
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So, you may remember that I am worried that something is going on again with my liver. I would like to ask if you guys have any comments on my symptoms. Have you had any of these while on treatment, and did it mean anything? Before I was diagnosed with a liver full of tumors, I had the following: Reflux, manifested in a hoarse voice and burping a lot. Bloating that came and went; looked pregnant when it was bad. Occasional "tummy aches" in the upper abdomen. Slight bulge below the sternum. Occasional pains in the liver area. Recently I have had all of these again, but they are all milder than before.
My TMs, though in normal range, had doubled on my last blood test. Most recent labs showed TMs down a few points, but still not to my usual. Last PET-CT showed two suspicious areas in my liver, but not dramatic enough to say it was progression. My onc says she doesn't discount my sense of things, but there is not enough evidence to change treatments. She did order a CA-125 test because of the bloating.
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Shetland, I've been feeling a bit like that lately. Some of my original symptoms but milder - breathlessness, bloating, slight nausea, metallic taste in mouth and very grumbly tummy. TMs were coming down for a while but have been consistent, with just slight fluctuations on last few draws. Onc says all these symptoms could be signs that liver is playing up again, or would also be consistent with having been on chemo for a while. So far I've tolerated well but this could be a sign that my tolerance is wearing thin! I'm off to be scanned in a couple of weeks to see what's going on. Let's hope we both get to the bottom of things soon
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Good morning dear Shetland Pony,
My case is in no way parallel to yours, so likely not useful to you. I hesitate to even comment on your questions, because my liver mets are both in and on my liver. Also, I have ascites (fluid in the abdomen) and peritoneal mets. It's impossible to separate the horse from the carriage. What causes different symptoms? Which mets cause ascites weeping?
I will note that CA125 has been a remarkably effective marker for my ascites/peritoneal mets of just over a year and also for pleural effusion for over 8 years.
I spent several hours reading about how the test works and still don't understand it well enough to explain it.
Aside: CA125 is known as the blood test for ovarian cancer patients and there has been some thought that it should be used to screen for ovarian cancer in asymptomatic, low- to average-risk women. Because of false negatives, false positives, risk of over diagnosis, invasive treatments, complications, etc. studies don't support CA125 as a screening method for the general population. Aside, neither are pelvic ultrasound exams for ovarian cancer in asymptomatic, low- to average-risk women. The controversy is remarkably similar to breast cancer screening and prostate cancer screening - do these tests help more than harm?
This is probably more than you ever wanted to know about CA125 and ovarian cancer screening, but as humans in a medicalized world, it really does help to understand the territory we travel.
Sending a hug of light while you puzzle this out, Stephanie
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Shetland and Isy, I do hope they get to the bottom of things for you both. There is nothing worse than the anxiety and worry of new symptoms and waiting. So far I only get some mild stabbing sensations in my ribs. Occasionally enough stomach upset to not have an appetite. I have also had pain in my right shoulder for a few months. My Onc said it was probably arthritis. But it does not feel like arthritis and I have had it no where else. So have to wonder if symptoms are being discounted? My TM's rose slightly last time but scans showed stable with slight improvement. Shetland, my understanding is that it can take 4 to 5 months for Faslodex to kick in full strength. I so appreciate your observation that we are victorious every time we face the day with courage and a smile. No one but a cancer patient knows what a lonely and dark "battle" we face. Thinking about you ladies today and hope things look better soon.
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Hello all! I am back from a nice vacation in SC to visit family. I forgot I had cancer maybe not for a whole entire day but for most of each and every day.
I have scans on Thursday and I am feeling just fine about it except for the fact that I just cannot wait to know the results! I think this is mostly the case for me...not fearing results as much as impatient for them.
Shetland, fear of original symptoms is something that definitely sets me back from time to time. Even had some extra scans thrown in there once because I absolutely convinced myself I was going down the inflamed liver path again. I was not, which I say not to minimize your suspicions in the least, and I love that my doctor ordered up those scans, even though she thought I 'd be fine to wait and see. Anyway, I still find myself in that place, thinking "Oh, no! I didn't eat that much and I feel full already." Or, feeling uncomfortably bloated, etc. But, I've decided to push it aside as far as I can will myself to do so. I take some comfort in what my onc told me at the time of my last moment of hypochondria (something that absolutely never ailed me prior to cancer dx). She said that many women highly attuned to their own bodies often can detect progression before she can clinically detect it. However, detecting progression earlier doesn't give cause for changing treatment earlier...there's no advantage changing earlier. So, I'm trusting in that and figuring that if things are indeed going south, I'll figure it out eventually, worried or not. Hoping you find peace in whatever happens. That's my prayer for myself.
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kaayborg, Something about your posts bring me great calm. SC sounds heavenly right about now. I believe that is where Kandy's beautiful yard is that everyone wants to go party at! We'll be thinking of you on Thursday!
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kaayborg,
Good luck to you on Thursday, we will be waiting for the update . Hugs.
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Shetland ,
I have had your symptoms before , during and after treatments , the last one being a month ago before my scan. Nothing turned out wrong , even though every time i thought it was back . My onc did not disregard my symptoms either but all looked normal and was seen normal. I have only fatty liver infiltrations but no lesions or activities are seen. But i understand how all these symptoms make you nervous and worry you. Hopefully they are only what they are, SEs from cancer and meds also. My colon has never been the same since the first cancer treatment and the bloating sometimes is part of it, as well as reflux and a tiny pain on the upper abdomen but it comes and goes. I feel it specially after my herceptin /perjeta.
I hope you soon put your mind at ease by knowning what it is. But i would not worry much specially that your Tms are ok and other tests. Hugs.
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I got a phone call from a different oncologist then the one I see this morning. Scary. but I was told that my oncologist was on vacation and that my CT scans showed NED! So relieved. Thanks for the support
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HAPPY DANCE Leftfoot! That is fantastic! May we all experience the same someday soon....Whoop whoop! Woody, It is very comforting to hear someone else talk about their bothersome symptoms and know it was nothing too serious. I know we are all different but sometimes I just need to hear that not everything is impending disaster....And Kandy's house is NC not SC! Oops...
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Hi all. Question do tms risr and fall? What if tms are up 85 points?? Ugh. Waiting on call from nurse.
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thanks Shetland. Sorry hasn't been on in awhile. Here we are and hopefully here we stay for another five.
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ugh. Dr just called and is ordering a scan for this week. I'm freaking out!! Tms r up 90 and liver enzymes are up a little. Oh no please don't let this be happening. I feel like I just got punched in the stomach.
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Livn, i am so sorry you have to deal with anxiety again. I am sure you will know soon enough and probably you doctor will have another med option. My prayers are with you, please keep us posted.
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Left i am doing the happy dance for you yayyyyyy! May Mr. NED stay with you for a lng time
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Lvin, so sorry that the panic is setting in and your ship is rocking. Breathe deep. It's not the end for sure. Maybe time for a change but also maybe not. Lots of uncertainty which is where we live. Hating that for you and all of us and wishing you the best on your scans. May all alarms be false and if it's time to change treatment may the next be long, long lived.
Leftfoot...yay! Spread it around!
A question for all: So it seems so many of you are watching tumor markers. My onc doesn't look at this or at least I think she doesn't as it's never been mentioned to me. I never know what you all are talking about number wise, though I know what tumor markers are. Are any of you aware of reasons this may not be part of my equation? Plan to ask at my appt. next Tues but just wondering in the meantime.
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my last onc, when I was stage 3, never did tms. He said not reliable. My new one gets then done, maybe becuz if stage 4. Not sure.
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thanks woody.. I'm really scared....
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kaayborg,
Maybe your TMs are not reliable, not all cancers produce this protein. I checkedsince the beginning but they were never very reliable except a little when my cancer mutated to her2 they rose a little. You can ask your doc next time
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Thinking of you LVin, and wishing you the best. My TMs were up before my last scan, and the scan still showed stable disease. TMs are just an indicator, but not the final determinant of progression, but i know how anxiety producing it can be. {{{{hugs}}}}
Kaayborg, Some docs don't put much stock in TMs and others do. I think that they may take them but if they don't really reflect your own cancer situation, they stop. Mine used to take a couple of different ones, but the only one that has ever been consistent for me is the CEA. The others look normal even when I'm progressing- so now he doesn't bother with them. I'm sure your onc has a good explanation for you.
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Livin- TM do fluxuate for many many reasons. I am hopeful that your scans are good. if not, I I am keeping it positive and saying that there is another treatment option that will help you stabilize. I know what it is like to worry about tumor markers. I worried over mine the other day. Just go back a few pages. Mine are abnormally high for me, but my scan was good. So I am hopeful that your scan comes back as stable.
Kaayborg- these are the most common TM tested
CA 15-3 ( normal range is <31 U/ml ) but this marker is elevated the first 30-90 days of treatment so best tested after 2-3 months of treatment
CA27.29 (normal range is <40 U/ml)
CEA ( normal range is <2.5 ng/ml for non smoker or <5 for smoker) cancer
CA 125 (normal range is 0-35 U/ml) - this is used for ovarian cancer but my previous oncologist used it for me.
TM are not an exact science. Mine have almost always been in the normal range even when diagnosed with metastatic cancer. What we watch is for an increasing trend upwards. If they continue to rise, or stay high for me then the oncologist will order my scans before the normal maintenance time. there are lots of things that can increase the TM including cancer cells dying, PMS, inflammation, etc. So high markers can be due to non cancerous things.
Hang in there
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Leftfoot, so very, very happy for you! Thank you for sharing good news.
Livin, I'm so, so sorry for your stress and worry. I know that feeling and to me it is just the most helpless feeling ever. I'll be praying for you and hoping the fluctuation is due to cancer cells dying!
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Lefty, happy for you, we all need a little good news.
Lvin, sorry for this new scare. I am still learning about TM, my MO said they were not reliable, but they did run it a month ago when I was dx.
I am having my 2nd Taxatere tomorrow. Ugh, I need to think this is worth it, cause right now I am having doubts. I did spend 3 nights in Calif. Over the weekend with my family. Nice hotel on the beach. Maybe overdid it. So sore today. I walked about 4 miles Sunday morning, in the sand. My gut & abs are screaming at me. Also swelling in my ankles. The swelling I think is common with most chemos, also flying back & forth.
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Leftfoot- great news- do your happy dance!!!!!! NED is pretty amazing!!!!
Livin-sorry for this scare. Every dr feels differently about TMs. For me the CA 15-3 is spot on and the CEA is totally not reliable. TM's are used primarily as an indication of what could be going on. But it is the scans that are most important.
Holeinone-sounds like you may have done too much!!!! Take it easier this time and see how you do.
Babs
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Leftfoot, so so happy for you, congrats!!!
Livin, I am so sorry you are going through this. My 1st 3 months of Ibrance, my tm's went up, every single month!! And i ended up with good scans. So don't let this get you down! We are here for you no matter what!!
Alissa
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@leftfoot, you go girl!! Yea NED
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Just got my TM results. CA15-3 went down from 128 to 70. MY CEA went down too from 24.4 to 18.1. I'm thrilled since my CA15-3 has always been spot on with what's going on with my MBC!!!!!
Babs
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wonderful news babs! Wishing more and more decrease ! Splendid awaiting more good news in the months to come.
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My TM's seem to be a good indicator so far except the last round they elevated slightly even tough my scans were good. Get another lab draw on the 18th so we'll see. My Onc does them once a month but does not put TOO much stock in them yet. Lvin, Trust me I know it is hard to not freak out, Sooooo easy for other people to say. However, try not to get too overwrought as it could very well be nothing, something small that might mean change in treatment that will work wonders. I have a feeling it will be OK. Keep us posted, we'll be thinking about you. Holeinone. A four mile walk on the beach sounds like heaven to me right now but would also kick my ass! I Need to start working harder on the fitness.....Yay Babs! Every victory is a thrill!
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Great news, Babs! Cheering with you!
Thought I'd also share another quote I came across reading last night. It's a bit different than the phrases I typically record in my journal but it may be one of the most profound and helpful to me in the daily casting aside of fears. I have a feeling I'll be saying it to myself a lot. "Stop worrying about shit that ain't happening!" Okay, I'll try.
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Congrats Babs!!! Loving all of the good news lately! And the good quotes!
Alissa
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I am so sad and angry right now. I had been told I would start clinical trial chemo on 4/8. Just got call from nurse that she forgot biopsy had to go overseas and be looked at by lab. It takes 5-7 days from arrival to be certified. She told me it still had not arrived.
Beyond the kick in the gut that the cancer is just sitting there, growing, I spent the last week re-doing my schedule for a 4/8 start. That required getting people to cover my chemo days and moving literally @ 10 full court days around.
I feel so helpless and defeated. I have to work. I need the insurance and the income. Intellectually, I know everything will work out, but emotionally I am lower than a snake's belly.
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sorry Matti. That suck
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Babs- such great news!
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Mattie, that really does STINK! It is hard enough to deal with all of this without the added burden of trying to keep going in a professional manner at our jobs so we can make money and get benefits that we need to start the circle all over again. One of my biggest frustrations right now is trying to feel like I am doing things to really live my life, yet between the appointments and work I am feeling like I am stuck in a big cog in the machine. I hope they get your stuff in time and everything will likely work out just like you said. But kinks in the plans can be sooooo frustrating! Hang in there!
kaayborg, I like that quote too. Sounds like something my husband would say and is definitely easier said than done. But I'll try and say it with you at least once a day!
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MattieFang,
I am horrified at such a tall tale that the biopsy has to go overseas.. That means your insurance company is beyond cheap sending it probably to India to save money. Biopsy's are not that high a cost. The stress on you is incomprehensible. so sorry. Carolyn from Music City
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Mattie, I am a super type A planner and stuff like that drives me absolutely bonkers!!!!!! It should not be, it should not be! Your last line is so true. May it work out soon and you find an eagle.
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Thank you all for the cheers
Mattie Fang-I know it's both frustrating and upsetting to have the delay but try not to stress over something that is totally out of your control. Take a deep breathe111
Babs
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I really feel for you Mattie. Juggling work and cancer is not easy. Especially when you go out of your way to accommodate them and then they make stuff ups without any regard to what is going in your life! So I specifically ask for my scans to be on Thursday cos I teach on Wednesdays and what do I get? An appointment for Wednesday. Grrr,deep breath...
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Hi, Everyone. I have been wanting to get back here for days. Not ignoring you, just trying to keep up, with fatigue and insomnia slowing me down. Anyway, I'm happy to hear good news from leftfoot and Babs! Livn, when is your scan? Mattie and Isy, ugh, as if you didn't have enough to deal with. The hospital scheduling people should do everything they can to help us live our normal lives. Do you have opportunities to submit suggestions to your hospital? I turned in written compliments on how my schedulers work with me; they are doing a good job. I hope yours improve.
Longtermsurvivor, thank you for the info on CA-125. If mine comes back normal, I think I will worry a little less about undetected abdominal mets. If it comes back high, my onc will order a CT with contrast. Woody, thank you for telling me that you have had symptoms but a good scan. I suppose it's possible my body is just getting tired of these drugs, or is working on clearing up cancer debris. I suppose it could also happen that I am right about trouble brewing, but my body will beat it back. Or maybe, the next scan will confirm my suspicion and I'll have my first progression and treatment change. Nothing to do but wait, I guess. Kaayborg, that's really interesting that your onc says some people can detect mets before the tests can. That would so be me. But why would there be no advantage to early detection? We hear this all the time but I just don't get it. Wouldn't more cancer mean more damage and more chance of spread to additional sites? Might early detection mean there is time to try an easier treatment first?
On the subject of the "battle" I guess I was trying to say that we don't have to have a smile or courage all the time. I don't want anyone to pressure or criticize themselves for being sad or fearful at times. Personally, sometimes I feel like a small scared Hobbit clutching my dagger and heading into the dark cave. Sometimes I feel like a sturdy little pony enduring the snow. But warrior, not so much. Sometimes I have the blessed experience that kaayborg mentioned, of forgetting cancer for a while.
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Hello all,
Mattie, sheesh, I have never heard of biopsies going overseas. My tumor marker test went to San Juan Capistrano, CA. I was surprised.
Babs .......😀
Kaayborg, love the quote. My potty mouth has only gotten worse with age & Cancer.
I had Taxatere # 2, two days ago. My liver #s were all down, MO said its working. I will take that good news & try to stay positive.
Shetland, I have never like the "warrior" analogy. Like we signed up for a competition or a triathlon.
Mary, check in when you can. Thinking of you.
Thanks to all of you here. Barely a month into this new dx, I am still accepting this. You all have made this easier with your advice, knowledge & concern.
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Holeinone, very good report from your onc! I hope that helps you feel that the taxotere is worth it. What kind of chemo schedule are you on? And yeah, we didn't sign up and we don't have a worthy opponent. If it is an opponent it's actually a *&%#@*# one. I never swore via punctuation or any other way before cancer!
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Shetland, a sturdy little pony enduring snow...this I like and think I perhaps am on my best days. The fight, battle thing doesn't much resonate with me either. It implies that I can somehow be responsible for the result. Sure, I can do some things to help myself and try to keep a sunny attitude but ultimately what the cancer does to my body is out of my control. But, I am a sturdy little pony!
As for that question about the progression and why not change at the first sign, I have added it to my list of questions cuz I am just dying to know the reason void of my speculation.
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well Dr said scan is interesting. ??? He says he didn't think it's as bad as the radiologist said. There are spots on liver Dr thinks it may be becuz cells r dying liver is shrinking and it looks different. I still meet with him next week. Ugh. No change other than that. Was hoping for shrinkage. This sux.
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Holeinone- good news from your oncologist-take every positive and run with it!
Babs
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hey Lvin, Your news doesn't sound that dire either. Any kind of upgrade in condition is good news. Hang in there and wait for clarification.....Holeinone and kaayborg, I agree about not liking defining this as a "fight" as if we can ultimately direct the complete destiny......Shetland, I seem to have acquired a fondness for the F word. Sometimes there is just no substitute.
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Question
My TMs are going down. For me they've always been spot on. The end of February my scans showed that my liver mets decreased significantly. My blood tests this week showed a significant increase in my liver enzymes. MO thought it could be from my taking Tylenol or alcohol. Neither of which I've done. I'm going for a repeat blood test next week. I'm concerned. Had this happened to anyone else? What could cause this?
Babs
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Babs- I think breakdown of cancer can bring liver enzymes up. So too can a lot of the mess they put us on. I am hopeful since your numbers are down and sca is good that it is just your liver adjusting to its new state. Lots of dead cels to filter out.
I hope for the best with your repeat blood test.,
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Babs,
Xeloda causes liver enzymes to increase , mine did when i was on it. Also like Leftfoot said dead cells may cause it. PET scan will show a clearerpicture and activity. I would not worry if your TMs are reliable and your liver mets showed decrease. Anything could raise thsoe enzymes, i was taking meds for cholesterol and it increased them. I believe it is most likely xeloda , and it will readjust. Redo your test but not right away wait few weeks.
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Leftfoot and Woody
Thanks so much. If I hadn't had the scans the end of Feb, I would have been freaking out. I am concerned but I too was thinking it might be either the Xeloda or the liver mets breaking down.
Bab
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Feeling a bit down today. Cardiologist called last night and told me my heart function was still only about 40%. This time he seemed to indicate that giving me more Heceptin would not be good. I see oncologist Tuesday. I know my heart can bounce back but its what I do I do in the meantime that bothers me. Last time they put me on xeloda and tykerb. They took me off tykerb when I got my solitary liver tumor last July after being on the combo for 2.5 years. There are other things out there besides herceptin, but those are often more cadio toxic. And when I was off all targeted therapy, I had metastatic cancer within 6 months. I know I am getting a head of myself, but its hard not too. Just worried.
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lefty, sorry you are having a tough day. Are your cardiac issues related to chemo, Cancer or something you have always had to deal with?
I am taken it easy, bone pain from Neulasta. Since my first go around with chemo, I have a hard time concentrating on a book. Short articles, newspaper, I can stick with. A novel or non fiction seems overwhelming. Chemo brain is back....
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holeinone- my heart issues are a direct result of my herceptin treatment.
Hope your bone pain gets better. I remember it from my old treatment days. I have heard that Claritincan help.
I found a new love for comic books when I couldn't concentrate well.
Hang in there
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Left, i am sorry about the news of your heart. Me it is perjeta which seems to be the problem. But i am interested to know ahve they given you any medication to support the heart ejection? If not this would be very odd. I was given ACE medication they are used for patients with potential heart failure. They are helping in keeping my ejection normal. Since i have COPD my lungs did not do well on one of them they changed the med three times. I am also a smoker. Also i had a stress test but i did not have to walk they used a thalium test to check on my heart's health. My heart reserve are excellent the ejection is due to HP . So they boosted it with meds so they don't use the reserve. You may want to check with your cardiologist about all this. I hope your heart bounce back soon and you get to have your meds. Hugs
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wiodylb- I am already on an ace inhibitor and beta blocker. So that adds to my frustration. I am on a very low dose but my blood pressure Was already low. Cardiologist is afraid to increase my heart Meds as it might just make me pass out.,
I am hopeful we can try at lest one more round of herceptin and/or try upping my heartvmeds just to see. It will make for an interesting conversation Tuesday.
Thanks for the suppor
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Left,
They increased my beta blocker with another half and my ACE a higher dose and it worked. I have also low blood pressure , but the strange thing is that my blood pressure is higher than my usual. Go figure.
I hope they will find a way to treat your heart and keep on the same cancer treatment since it is working so well. It would be a shame to have to change it. I hope he gives you an answer. I truly understand your frustration and will pray for you to resolve soon.
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Babs, My liver enzymes skyrocketed while on Femara/Ibrance. My Onc took me off even though I showed marked improvement which upset me. I have never heard that elevated enzymes could be caused by liver mets breaking down but plan to ask about it. I am very much hoping to try that combo again someday although it was not as easy as Faslodex. My Tms' went up slightly last month on Faslodex even though my scans looked stsble so who knows??? Woody, how high did your enzymes get before your Onc became concerned? Left, I'm sorry about the heart issues, I hope they find the right balance to get you back on track.
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Artist , my onc did not get concerned about my ensymes , he knew it was from Xeloda as i was asymptomatic. He changed meds because I had mixed response which he considered a failure , since in some place i was stable in others i continued to progress.
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Woody, My Onc seemed more concerned over the high enzymes than how the meds were working. She said the elevated enzymes could cause live failure which was pretty scary. I saw a liver specialist who was also freaking out. I am still not clear on which med was causing the elevated numbers but hope to try Ibrance at a lower dose when the Faslodex is no longer helping. Or maybe some new wonder drug will have emerged by then?
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Artist, i am sure pretty soon there will be new treatments , they keep popping up and i hope the do. I don't know how high were your enzymes for your docs to stop the treatment . Mine were high but not alarming.
I hope faslodex will keep working for you for a long while.
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when people are saying high liver enzymes- how high- 2-3 times higher than normal ? or more
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Hi ladies. It's been awhile since I checked In and I haven't had the chance to read through the posts to see how everyone is doing. I have had bone mets for 3 years and liver mets since September. I started with afinitor/Aromasin. At first it seemed like it was working. First PET scan in December was clear. But them my TMs climbed a lot so we did a liver MRI and sure enough the beast was back. So after 5 months on Afinitor/Aromasin, we switch to Ibrance/faslodex. I'm almost done with my second round. One tumor markers went down and two went up. Onco is talking about 12 weeks of taxol. I asked if we could please give ibrance/faslodex a bit longer. I hope I'm not making a mistake. I have blood work on Wednesday to see if TMs are still rising and a liver MRI on the 19th and then a PET after my 3rd round. In my opinion if things have stayed the same and have not progressed, then I want to give the ibrance more time. Any advice
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sonyarizzo,
I know how hard it is to wonder what the best course to take might be. A lot depends on the size and number of liver tumors, probably, in your doctor's mind. If there are just a few, he might be happy to let the hormonal try to work longer, but if he is worried about the liver getting out of hand, I can see why he would want to hit them with an effective chemo. In this case, if you trust your doc, I'd probably lean toward his suggestions, as he has been on this road a few times, as they say. On the other hand, you can always get another opinion if you have doubts about his recommendation.
Your results on Wednesday may make it easier to make a choice. If things have stayed stable, he probably will be ok with letting things go a bit longer.
I am sort of in the same position with Xeloda. I was on Faslodex for three and a half years for bone mets when the cancer moved to my liver. I went on Femara/Ibrance for three months, and my tumors increased in size. So off that I went, and on to Xeloda. So far, the scans have showed they reduced in size and are stable (eight months on this drug.) He may want to take me off of the chemo to try another hormonal that I haven't tried yet, but I wanted to stay on Xeloda awhile longer, as it was working. He agreed since my tumor markers have settled (they had been slowly rising, even with the stable scans) but his idea is that a hormonal can work longer generally than a chemo, although a chemo can kill off a lot of cancer so that a hormonal can be tried again.
Maybe if you have 12 weeks of Taxol, and your liver tumors regress, he would be open to going back on a hormonal to keep things stable. This whole thing is an art as much of a science, I think, and there often is no one right answer. Good luck to you!
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sandilee. I agree it is an art and a science and God. It's all in His plan. I'm just so tired of being in limbo. The thought of an IV chemo again scares me really bad. Sometimes we beat our bodies up so bad with chemo that we can't fight any longer. I want to save the big find as a last resort. I haven't tried xoleda yet. I would like to try it before we bring out the big bad IV chemo. My onco keeps trying to tell me that the IV isn't any worse than the oral. I don't buy it. I'm trying really hard to avoid it for as long as I can. I was stable for 2 years on arimidex when I was first diagnosed with mets. I would love an extended stable again. I have been on a continuous roller coaster for over a year now. Cancer loves the liver and it a hard to get it to stay away. This life is so hard. It's exhausting. It never gets easier and you never get used to it.
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Oh jeez...I've been away from this thread too long...breaks my heart when I log on & see so many new names & faces. At the same time, I'm relieved we have each other, with so much experience (is that a good thing?), but love & support, understanding & empathy.
Artist...I'll be praying for good scans on Thursday...you know we'll be right alongside you! JFL...I went through turmoil trying to get xeloda approved. My onc wanted it w/navelbine & herceptin, but the ins powers that be (no oncs!), decided there weren't enough million dollar studies to warrant the 2 together. I ended up with perjeta in its place...which ended up being a very good trio of meds for me. I'm so happy the stars aligned (divine intervention) to get you the meds & make it to the airport in time! I'm wondering what conference you're attending...hope there's great info & support. Being surrounded by sisters at this tough time will surely give you hope!!!!
Sonya...Sandilee has great advice...there truly are iv chemos that you can have success: qol & life, with. I was on navel/her/perj for nearly 2 years & lived pretty much my normal life...yes, being more careful w/keeping a healthy immune system & yes, being reminded constantly of the disease & being frightened, but it worked well. I pray you can reach Ned w/out iv chemo, but just know that if it becomes necessary....there are drugs that you can have qol with.
Im sorry I don't recall who is getting a port (if I go back...I'll lose what I've typed)...I had my first removed when I was "cured"...I said it was the best day of my life. When I got my port w/3rd, stage 4 dx, I said it was the best day!!! I can't believe getting accessed somewhere outside of the cancer center will mean they need to use veins...ugh.
I also have aches & pains, but they're mostly due to muscular exertion, even though I always fear it's due to lurking bc cells. I am lucky to be doing well, but I take prozac, do acupuncture, walk & am going back to yoga to keep my mind sane. I pray earnestly for everyone, all of us, living with this disease.
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Rodeogirl,
I do not know how high they mean hear . But anything higher than the normal is considerate high some alarmingly high ans some just a tad or a bit higher. But when the doctor says it is very high this would be in the 700 and above and normally the billirubin will climb high as well which will mean the liver is not functioning properly and the problem should be addressed
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Sonya,
I am sorry you are in such a turmoil. But let me tell you your onc is not wrong iv chemo is not much worse than pills or any other. It all depends on each individual and how we respond to it. I had four courses of chemo and lived pretty much a normal life without the hair of course but the quality of life was ok. As for xeloda my feet were hindering my daily life . If you still have some place where you still progressing and others no then the treatment is not fully benefitting your cancer. Taxol is a good chemo for cancer , i took it weekly on low doses for 6 months along with other meds and it worked wonders for me. There is also another lady who did only taxol it got her to NEAD for one year. It really all depends on what your doctor believes , he still knows best. And do not be afraid of chemo . Our bodies are beaten every day by different things not only chemo. This is the reality of cancer.
You have to be comfortable with yourself , keeping your strength has nothing to do with the meds. It is you inner strength which will fight your cancer not your body on his own.
I hope you soon find your way and find peace in the decisions you make.
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Ronniekay..Thank you! QOL is important to me even if do end up bald again..I really do hope that this med combo starts to work!
Woodylb...Thank you! It is good to know that people tolerate IV chemo well. I didn't realize that when you have mets that the dose is lower. I would love to be NED again! I am trying to find my inner strength again. I feel like I lost it when I started Ibrance. It took all my energy its making me depressed. I am thinking of starting an antidepressant, but I don't know if I want any more crap passing through my liver. I need my inner strength again, I just needed to put the boxing gloves down for a bit. Sometimes you just get tired of the daily fight. I guess I just need to mentally prepare myself for the fact that IV chemo is coming soon. Maybe I will go try on my wig..LOL
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saw the oncologist today. I am no longer going to receive Herceptin. I might be able to use it again somewhere down the line but probably not. We had s long discussion on what to do now. Tykerb is out at least for another 6 months or longer. Since my last scan was NED I am not eligible for any trials. TDM1 is an option but is also Cardiotoxic so not something I can start now until heart function gets better. Plus it has its own set of SE which are stronger than what I'm dealing with in Xeloda. So I'm in a weird place. I could stop taking Xeloda. As well and see what happens. I think I decided to keep taking the Xeloda and go without s targeted therapy for now. We will scan frequently to watch for changes.
I'm a little scared which is why I will stay on Xeloda. Might take a chemo holiday over the summer. I am not comfortable not taking anything. We will see how well Xeloda does on its own.
What a roller coaster.
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lefty, I agree. A scary, nauseating roller coaster.
I got my tumor marker test last night online. Drum roll............dropped by almost 1/2. Happy Dance ! My liver still is huge, but not as hard. My tumors are innumerable, so I know this takes time. I have a belly ache most of the time. The CAT scan my stomach & bladder were compressed from the liver. Also curious if this will change soon ?
In your pocket, whomever is getting tests this week. Trying to keep up, figure out who has what going on, it's a new language here.
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Sonya lolllll ths is the attitude at least with wig you can look any way you want. Seriously now , i know what you are feeling , it is a tough roller coaster and quality of life is a big part of it. But if Ibrance is depressing you maybe it is a good idea to take a mild anti depressant a lot here on board take one. Discuss it with your onc and maybe he can give you something mikd just to help you get ou of this impass. I hope you soon go back to your old self again with you boxing gloves and fight the damn disease and meet NED again. We are here always ready to listen. Hugs
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Left, i am sorry tou are stoping all targeted therapies for now but if it is for your heart health than it s worth it. I breake never hurt anyone. Staying on xeloda alone is not bad and who knows it may be able to hold it until your heart is better and psychologically you will not feel unprotected. God be with you . Keep us informed. May you stat NED no matter what.
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Holeinone ,
Yayyyyy half is not bad at all , it is better fir the treatment to work slowly the fast thus enabling the tumors to return fast and stronger. It will take some time but you will get to a good place
Still you desrve a happy dance ! Awaiting more good news.
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Leftfoot-I'm on X alone and it is working-hopefully it will for you!
Hole in One- 1/2 is great! Happy dance time!!!!
Sonya and woody-yes, it is a roller coaster ride-one we'd all like not to be on. X has been working thus far but last week my liver enzymes went up a lot (more than double) which scared me since they say X effects the liver and I was nervous I'd have to stop the first txt that worked for me. I had a blood test today and the liver enzymes went back to what they were-within the normal range! Yippee! But my HFS is so bad! So many ups and downs on this ride!
Babs
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Some more good news to report here. With reduction and delay for 2 treatment cycles, we still have shrinking tumors. By only a few mm but moving in the right direction, feeling well, and keeping counts where they need to be...well, this makes me quite happy. I actually feel it as the best news I've gotten yet. Nothing on my brain MRI either. Yip, yip, yippy!
Keep good news coming from all and to those at the bottom of the track, may you zip directly to the top of the biggest hill and breakdown there. Normally a terrifying place to be stuck, but on this roller coaster, stuck on the up is grand. Perhaps the biggest hill should be named Ned.
I did get some info from my onc about TMs and why changing treatment at the earliest progression is not often best. First, she defines early as just a few mm of progression. She also thinks the risks of changing treatments prematurely and developing resistance to treatments faster, outweigh any risks of waiting a bit and watching more closely to be sure if something is really up or not. She doesn't use tumor markers but has begun to use them a bit more with patients who desire it or are used to it in other practices. She thinks they are most helpful with bone mets. Of course she offered to do them for me, but I declined. I'm not sure I would be able to take much stock in them. I'm not sure I'd want the false worry. What do you think?
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Kay, I bugged my MO to do them when my first round of tx was completed. NO ! Against protocol, not a sure science. She has run them twice now, since becoming stage 4. It's the CA-25 one. (? Not sure, have to look that up). My first test came back crazy high, in the 400s. The number I got last night was 240. Still crazy high. But makes me more positive that I am enduring more chemo for a chance to get a few more years. I think the normal range is under 40.
I still cannot get over what a short time you got before the new dx. My stage 3 was aggressive, and I was told by numerous Drs. that my odds were strong to have this progress. So my 2 years post treatment, I never believed I was cured. Of course I wanted too, or have this pop up in 10-15 years, when I was older. Did you go through a angry spell?
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Babs, Xeloda does increase the liver enzymes but if your liver is healthy dispite the tumors the enzymes will come back down and yours did . So yayyyyyy! I whope Xeloda will keep working for you for a longtime.
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Kaayborg,
Yip yip for more and more good news! I am thrilled you are well and your tx is working on killing your tumors . I hope you soon get to a good place.
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Holeinone and kaayborg,
Not all doctors check TMs but it is never against protocol. But in or order to check them and get more or less accurate results, you have to have a baseline. Tumor markers should be checked at the beginning of a dx before treatemt starts then the doctor will know if they are reliable or not. If you do not have a baseline than you would have nothing to compare it too. With some people it is a very good indicator with others not so much. I check mine but i do not rely on it completely, while with other sisters here and friends it is very accurate. The breast cancer marker is CA15-3 and in some liver mets cases they check CA27-28 . Ca125 is for uterine cancer.
So it s a choice whether t have it done or not. Depending also on the onc if she/he believe in it or not. It depends on each indiviual cancer if it produces this particular protein or not.
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like someone else said, sooo much to catch on when you haven't been on for a while!
Kay, glad to hear you're still doing well on our favourite gem/carbo. Feel I'm going to be moving on soon. Liver is good but pain in ribs and pelvis tells me that bones need attention. Scans tomorrow but feel like I know what they're gonna say. My body is talking to me loud and clear! Hugs to all,
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woody, thanks for the info. You are a wealth of knowledge.
Isy, In your pocket for those scans tomorrow. Let us know.
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definitely feeling more like my self these past few days. Maybe I went back into denial. Hey it is better than anger and sadness. I swear I have been through all the stages of grief so many times. Denial is great! Little dose of reality today with blood work. Hope my TMs have gone down. I sometimes want to ask them to stop doing the TMs. It is so stressful. Especially with how high mine are. I get mine monthly and have watched all 3 of them rise to a very scary place over the past year. So fortunately, or unfortunately...mine are accurate. It is usually a sign that the cancer is either on the move or it is getting worse where it is. It would be nice if CA 27-29 would get out the 18,000 range.
To all of the ladies who got some good news recently YAY! I love hearing good news. It gives hope. And may you stay at the top of the roller coaster for a long time. It is a good feeling. I hope to join you there soon. It has been awhile.
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Hi Sonya,
Yes, denial can be a good place, especially if you're feeling well enough to enjoy it!
When I mentioned the stress that rising tumor markers caused me to my oncologist, she suggested not using them and just making treatment decisions based on how I felt and what she saw. An imaging exam could be used for more details. That was a couple years ago and I stuck with the tumor marker tests for a while, because I did want to know.
Now that I'm on hospice, I don't get any blood or imaging tests. I'm pretty anemic and they check my fingernails, palms and lower inner eyelids for paleness to confirm. Then suggest I take more iron pills.
Not an exact science, but how I feel is more important than any measurement they make.
Taking it one breath at a time, Stephanie
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hi everyone. ...on March 4th found out about liver metastasis with CT scan of chest; March 17th had pet CT scan that showed lymph nodes and 2nd smaller tumor in liver. I'm scheduled to start treatment until April 26th! Should I ask my Dr about doing another scan to have a good baseline to determine if chemo is working? I'm afraid it has grown a lot over this month and 10 long days...
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gramen, sorry for your recent dx. Is this your first dx with Breast Cancer, or is this a progression to stage 4? I would guess the 2 scans you just had will be used as a baseline.
Did you have a liver biopsy?
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hi Holeinone, 2nd dx, had chemo +1 year herceptin/surgery/radiation/reconstruction in 2014/2015. Every Dr kept telling me to live my life but I felt fatigued and that something was off, breast surgeon finally agreed to scan in march. Sigh. Scan from March 4 showed tumor to be 4 cm, March 17 was 4.5 cm liver biopsy march 18 confirmed is the same nasty her2+...so scared this thing is growing exponentially and I'm not getting treatment soon enough.
Thankful for this blog. Lots of good info and experiences.
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Hi and thanks Woody, Thanks for the positivity on treatments and I pray the same for us both! My enzymes were AST 535 and ALT 740! Very high apparently.....After I quit both Femara and Ibrance they are normal again. It took about 2 1/2 months to slowly come down. sonya, When I first started that combo I saw improvement in TM's and scans in first two months. I hope the same for you and you can stay on it a very long time. WBC's are the thing that could derail some but they can lower doses too. Best wishes ladies!
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graymen- hang in there. My liver Ws full of mets to start with. Very soon after I started treatment I was NED. You are at the scary part now. But you can live life with stage 4 cancer.
Hugs
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Thank you for your words leftfootforward.
I've been wondering how I'm going to keep it together until the start of treatment and today ended up taking a puppy that my little brother couldn't keep at his apartment. Is going to be a good distraction in the months ahead!
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Holeinone-I cannot get over how quickly my cancer recurred either. I knew tnbc's recurred more often and on average within 2.5 years, but being stage 1a, I figured my chance of landing in the 30% or so that do recur, was even less. I don't think I really even had to time to fear it much. I had in mind a 5 year plan to do all I could to live life and prevent recurrence. Then to rejoice, that the 5 years meant most likely I was done with cancer, that I'd made it. What can I say? I'm talented at being unfortunately special. Angry? Yes. None of it makes much sense, does it?
Gramen-Sorry you have to be here with us but glad you found us. A puppy should adequately distract. Post a pic if you can. I'd love to see that adorable face!
Who is the dancer? I remember that someone is a dancer. I'm thinking Artist or Shetland, maybe Isy. Anyhow, I am looking forward to see this tomorrow evening. I have recently been in contact with Susan in the video. She is a family friend of a friend. I love her!
Watch "Our Hour: Cancer Research through a Dance Community" on Vimeo: https://vimeo.com/161667993
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Gramen a puppy is a wonderful distraction I'm jealous I love dogs and would have one if I didn't work!
Kaayborg. Great news. Do your happy dance!
Holeinone. Happy to hear TMs are going down. You should also do the happy dance!
Isy. Hoping for good results for you tomorrow
Woody. Thanks for the positive vibes
Night all
Babs
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Isy,
I am sorry for the pain in your bones. But you know even though i am currently NED Ihave bone pain all over the body. My ribs, pelvic area, coaxis and all my vertebrae. Still no activity on any of them and an xray on the ribs showed only sclerotic bones and osteoporosis. I do nt take meds for it except rarely some solpadeine. My doctor told me these are healing bones and also treatments do this to our bones they degenerate. Of course you check it out with your onc but don't be so worried m it maybe just the side effects of chemo nothing less or more.
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Graman, i am so sorry for your new dx , but like Leftfoot said , there are plenty of effective treatments to which you will respond. Specially that your mets are still her2+ . New targeted therapies are coming out every year and they are generally effective. I hope you soon start treatment and the results will put your mind at ease. I am sorry you joined our club of metsters but you are welcome.
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Artist isn't your scan today? If so good luck to you and happy findings.
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thanks Woody, you are a tonic - a liver tonic, ha ha. And ever the voice of reason. I do believe my body has had enough of this chemo, I'm tired and have a constantly grumbly belly.had scans today and Onc will decide tomorrow whether it's time for a rest or change chemo.
Graman, the worst thing that ever happened to me was being diagnosed stage 4. Once you get over that, and you will, nothing seems ever as bad again and you will be able to take it in your stride whatever the future holds. I just booked a ticket to go to family wedding in London in September. At the start I would have thought things like that impossible but you can and will carry on living well cos what's the alternative?
Kay, I love modern dance and was fascinated to see your vid about the cancer project. What an inspiring and amazing way to get the message across and yet it makes complete sense to express it through dance. Would love to see the complete project but don't suppose they'll come to Australia!
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Isy- I just booked a family trip to the Galapagos Islands for summer of 2017. Love that you are going to London in September. Have a great time. We are going to do a family track to Ireland in June to see where Nana came from. Cancer has given me perspective. lIfe is short so enjoy it while you can. My kids have been through a lot, but at least they are becoming world travelers. That is one bright spot that has come out of my whole cancer diagnosis.
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my wife had 6 cycles of carboplatin & Gemzar and had a PETCT after 3 cycles which showed Complete Metabolic Response .Her MO has put her on Femara since last 15 days .she doesn't experience any Major SE till now except Nausea and acidity which Comes up 3 to 4 hours after taking FemeraThe Mo has Rx Gelusil -4 times a day to counteract acidity. Can this Nausea be a late side effect of Chemo or could it be Femara or few other medicine she is taking or could it due to Liver ??? Plz share your experience and guide
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Welcome Gramen, Sorry you have to join this great group but hope you find a lot of encouragement here. Yes a puppy would be a glorious distraction! I've been rolling that one over in my mind....
HoleinOne, I still have my TM's done and they seem to go along with current scans. So Monday I will have them done again and hope they have not risen as they did last time. Even though my scans said stable I guess you never know what might be lurking. Only risen by 20 but still nerve wracking. 1/2 reduction is great!
Sonya, I feel like you do about putting something else in my liver, although some days I could REALLY use a little chemical help. Like Woody says, If they have something you could only take on days that you need it, that might be a great thing.
Sandilee, Nice to hear from you and I am so glad Tx is still working for you. May it continue for a VERY long tme.
Left, I am sorry to hear you are in such a quandary about the next step, but since you are still NED a break may be a really good thing. When I had to get off of anything for 6 weeks so my liver enzymes could correct, my scans still came out very good showing improvement. So maybe just the Xeloda will keep you going just fine and give your heart a chance to repair until the next move is figured out. Thanks for your ongoing encouragement regarding liver mets!
Babs, The liver enzyme thing is so scary but I am very happy to hear you and Woody say that they can self correct downward since I may be on this Tx someday and already had issues on Ibrance. It was another roller coaster inside the big roller coaster.
kaayborg, Yippee! I am doing a very happy dance for you too! Good news all the way around!
Isy, thinking of you today! Let us know how it goes.
Ronniekay, Always so good to hear from you and glad you are doing well! I am going to try and follow your lead and get back to more activity since Spring is here. (Although it snowed this morning.......LOL!)
Stephanie, I think of you everyday and treasure your kind words of wisdom.
Woody, Ditto to you. You always impart such a wealth of information and comfort.
Best wishes to all!
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Many, so glad for you and your wife that she had such a good response to chemo. It is hard to figure out what's what with all the drugs. I hope others here and/or the doctors and nurses can help with the nausea and acid reflux. Keep asking them for help.
Holeinone, great news on your TMs halving. Taxol did that for me, too. Each blood test they went down by about half until they were normal.
Hello, gramen, and welcome. I would be comfortable using the August scan as a baseline. My first on-treatment scan was three months after my baseline/diagnostic scan. But why so long a wait to start treatment? A puppy sounds like a great idea -- a wonderful, wiggly bundle of cuteness to cheer you up right now. Did you know there is a "Comfort Dogs" thread here on BCO?
Babs, good to hear your liver enzymes are ok now, but so sorry about the HFS.
Kaayborg, whew, very good that your brain MRI result was good.
Edit: Please forgive me for not going back more pages; I can't hold the information in my head long enough. My good wishes to Everyone here!
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Kaayborg, I loved the modern dance video you linked to. If I had a private jet I would so go to see that concert. It looks like fantastic choreography that shows true understanding and expression of its subject. Did you notice that roller coaster move?
I am having a dream come true, and cancer had better not interfere! I have been invited to join a dance group I had only admired from afar. Feeling very honored and happy. Seize the day!
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Everyone, thanks for the encouragement. So many feelings these says, including isolation. ...
ShetlandPony...I might be at fault for the long wait :-( changed MO's and ended up with one that was even gloomier. Went up to Boston and a wonderful doctor gave us hope and explained there's treatment options to try, and suggested collaboration with local center, so now onto 3rd MO. This week I mentioned my port was removed in November 2015, so getting a new one postponed treatment one more week (which feels like a year)...trying to start next week and getting the port later...not sure if Dr will agree yet
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Definitely try. I got my first infusion without a port, then my second infusion the same day as port installation. Glad you didn't have to settle for a gloomy MO. (P.S. If you want to fill out your profile, it will help your friends here understand your situation.)
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Hi All,
Haven't had much to contribute recently, as I'm on a different path with liver mets. Hospice choices differ from treatment choices, but I thought of something that might be helpful for others with compromised liver function - different routes of administration for drugs.
I learned this from MTF transsexuals who were taking estradiol to develop female sex traits. For a couple of years I took estradiol for my ER+ breast cancer in an effort to both treat it directly and to resensitize the tumors to anti-hormonal aromatase inhibitors. Another, longer story.
I learned from these women that allowing the pills to dissolve under my tongue softened their effects on my liver. It's a method of action called first-pass effect. By allowing drugs to enter the blood stream through the mouth, rather the stomach, their first pass through the liver was detoured.
I'm probably not describing this completely accurately, but now that I'm taking liquid morphine for pain, I've been given the same advice - hold the medication under my tongue or inside my cheek until it's absorbed, rather than swallowing it to spare my liver. Also, I can take less of the drug to get a bigger effect.
Here's wikipedia on the first pass effect:
excerpt: Alternative routes of administration like suppository, intravenous, intramuscular, inhalational aerosol, transdermal and sublingual avoid the first-pass effect because they allow drugs to be absorbed directly into the systemic circulation.
https://en.wikipedia.org/wiki/First_pass_effect
You never know when or how you'll find helpful tips for working with our already stressed-out bodies.
And I'll never know if this actually helps drug absorption or just helps me feel better about it.
Blessings and good healing regards for the entire bco world, including this special liver mets community ~ Stephanie
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Longterm - That is excellent advice. I'm going to pin that up on my board. I hate taking pills anyway and I was thrilled when I got an ondastron (sp?) melt-away in the ER back in March.
It's been a really busy two weeks. The great news is that the biopsy made it to Belgium and I am in the clinical trial! Whoot! I start tomorrow and I am so excited. I find that this time I am not as scared, but I am ready to kick this cancer's butt and if that means poisoning myself, then so be it! (Plus, I bought a lot of really cute scarves this time around.)
My mom is coming up on Wednesday to spend the week and I am really looking forward to that. My dad is going to come up in May and I am hopeful they can come together in July. I had a really nice lunch today with good friends. It was a good way to set up for tomorrow.
I have planned out my chemo outfit for tomorrow and have my bag packed. I will be there for at least four hours and I'm going to try taking a thermos of soup with me for lunch. We will see how that works! I will also be packing my pommagranite juice!
Shetland, I have the feeling I'll be getting a port soon as well. My veins love to play hide and seek.
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hi ladies. Saw onc today. Dark spots that were not seen before he thinks because liver had shrunk where most of disease was. Things spots could be dead cells but 2 weeks ago TM went up 100, he's concerned. So off abraxane and on something called Elibrium? So we will see. Ugh. Hope you are all well. About NED, my onc says not possible, disease will always be there, mmm. I am all about NED!! I started on some tumeric and olive leaf. Hope it helps.
Be well everyone.
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Stephanie, thank you for the tip about those options for taking meds. I have worried about that, so it is helpful to know there are options and I will keep your note for the future.
Lvin, that's why I call it NEAD: No evidence of active disease. Evidence, but cancer is dead. That is possible. But if NED won't come around, the Stable Boy is great, too.
Mattie, that is so great that you got in a trial. What is the trial? You go, girl! Enjoy the cute scarves and the time with your family and friends. Treat chemo day like a day off with a picnic if you can, and thumb your nose at cancer. I made a chemo day play list of music, too. It was music to nap by since I got Benadryl in the pre-meds. A port can eliminate the pain and anxiety of a vein hunt on chemo day.
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Wow...this thread is hoppin! Stephanie, thank you, thank you for the great advice. Every now & then I get sublingual vitamins at the health food store. They have a bit of a citrus flavor (I'm hoping they can mask morphine!) that I like...until I worry about dry mouth & maybe it could cause cavities...the things we worry about...ugh. I know it's absorbed more quickly, didn't know it was gentler on the liver...I will bank that info too!!! I hear the same on NED from my onc too, Lvin & Shetland...I had no lymph node involvement with any dx, but critters still crawled into my liver. I asked onc Wed what the chances were that it's possible my liver was the ONLY place & since I'm stable & TMs are good, I can take a deep breath. He said to keep breathing, all the while knowing the blood stream can carry this anywhere. The topic came up because I asked about scans. I haven't had them since Aug & he said they aren't planning any. Said w/TMs good (faithful to me) & good physical condition, no scans. He said if some little thing showed up, they wouldn't really know what to do with it...has to be a combo of how I feel, markers, etc, before he'll scan.
Mattie...this is such good news! Hoping it's a trial that puts bc away forever!!!! Love your awesome attitude & I second the port landing!!!
I know there are scans in the works....prayers for good news on here.
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I feel I sabotaged my situation and made it even worse. :-( I'm an emotional wreck.
Found out about liver metastasis (4.5 cm tumor) March 4th. Changed MO, she was going to start me on treatment April 1st but gave me an expiration date and very little hope, so went to another Dr out of state that referred me to my current one. Was going to start next week but brought up not having a port anymore so they are moving me again. I ask about starting and getting port later but nobody listens.
I feel so guilty for delaying treatment an additional month. I'm devastated and feel no body cares because I'm already stage iv?
Hope you don't mind my venting session here
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gramen,
Sorry, sounds like you have been yanked around. Do you have just one tumor? I would be upset also, if the MO wanted to talk about the end, when you have just been dx & want to continue tx.
I had my port yanked back in 2014. I kinda knew it was a mistake, but I needed to feel like I was moving on. My MO asked me this morning if I wanted to schedule surgery for another port ? I told her no, I got great veins
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Gramen, no, no, no, no! You haven't done anything wrong! It sounds to me like you have made very wise choices. You found someone you trust and who has lots of good ideas for treatment.
Heck, 4.5 isn't all that big and as someone pointed out and my MO confirmed, we only need 10% of the liver anyway.
And even if you do have to wait a week, it won't change.
I am infusing right now without a port and wishing I had one. My MO was pretty un excited about me having one reinstalled while I was waiting. The nurse practitioner I saw today agreed I needed one! So, I'll get one in next week on Tuesday and infuse on Friday. Bottom line, tell your MO to start treatment now and set you up for a port after.
Vent away! Heck, I figure being IV means I don't have time to waste on egos or guilt! I found going out to my car and just screaming and ugly crying does wonders when I'm feeling really sad or angry.
Big hugs!
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Thanks for your words. Left another message to see if they start me soon.
I do need a port, only one arm available since I had all the lymph nodes in the left arm removed during my initial dx (2014/2015 tchp/mastectomy/ radiation/1year herceptin/reconstruction). Had reconstruction surgery this past November and port was removed sigh
Thanks for the advice I need to let all these emotions out. Scans showed another 8mm tumor in the liver, and 3 lymph nodes lighting up, well one area is the head of the pancreas but believed to be a lymph node...
Thank you thank you for the encouragement. Challenging place to be, but so glad I found this blog...this time around I've decided " to stay in the closet" at work and only sharing with immediate family. Last
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Thanks for your words. Left another message to see if they start me soon.
I do need a port, only one arm available since I had all the lymph nodes in the left arm removed during my initial dx (2014/2015 tchp/mastectomy/ radiation/1year herceptin/reconstruction). Had reconstruction surgery this past November and port was removed sigh
Thanks for the advice I need to let all these emotions out. Scans showed another 8mm tumor in the liver, and 3 lymph nodes lighting up, well one area is the head of the pancreas but believed to be a lymph node...
Thank you thank you for the encouragement. Challenging place to be, but so glad I found this blog...
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Gramen...you are being an advocate for yourself...good job...don't stop!!!! You'll get amazing info from this place...don't be afraid to use it! I hope you have a family member, friend, someone who can support you in your appts! I don't understand the wait...sounds like they know your plan & if a port is holding it up...hate to sound like a bossy boot, but get the port! Some chemos can't be administered in veins...like my navelbine. It shrunk my 6 & 8 cm tumors (immeasurable, there were so many)...and as time goes by, they aren't getting smaller if you aren't killing them off. I had chemo the day they put my port in. Yep, it sucks to have a port...but I love my going for tx & not having anxiety about finding/accessing a vein. Thinking of you.,,,vent all you want...we all do!!!!
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oh!!!! RonnieKay, I'll be getting Navelbine/Herceptin/Perjeta, may be that's why they want a port before we start. Port scheduled for Friday 22nd and treatment Tuesday 26th...I'll just need to keep it together until then and don't let all the guilt and negative feelings take over
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graymen- hugs
The port will be very helpful. I am close to needing one again s well as I too only have my right arm for all the poking my last CT they caked vascular scan ER nurse to get an IV in. 5th stick.
Herceptin is fine via vein but nots ute about perjeta. And as both those are drugs you will be on for a long time, the port makes sense.
And if you are worried about the slight delay you will be ok. My liver was so full of lesions to begin wit the liver specialists said they couldn't help and wished me luck with that look on their face we all know too well. 3 years later and I'm doing great. Hang in there.
Best wishes.
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gramen- and please make sure they check your heart for a baseline before treatment starts..
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Gramen,
Don't beat yourself up for the delay, you will be ok . But like Leftfoot mentioned please make sure they check your heart before you start on herceptin, perjeta as they effect the heart and you will be on them for a while.
I too had a port which was removed after my first diagnosis , then had another installed upon my second diagnosis.
The important thing is that you found a doctor you trust and is helping you fight the disease.
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Mattie, i am so happy you are up for a trial and wish you a good response, good luck
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hi all. Dr took me off abraxane, scan showed some spots, liver has shrunk where disease was but tms were up 100 points so he's changing meds to Elibrium I think. Anyone else have spots show up during treatment? Dr thinks they might be dead cells, he didn't see them on first scan.
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Livn, i dd not understand the scan showed liver shrinkage while there are new spots? If so it could happen, i had reduction on xeloda in some spots and on others i had progression. But after this i showed positivity on her2. Is he changing you to Eribulin? And can you ask to check or do another biopsy on the new spots ?
You are in my prayers.
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Lvin, I'm another one with mixed results. Some growth, some shrinkage. It's because our stage cancer is very heterogeneous (thank you spell checker!) and unfortunately nothing out there at the moment is a one size fits all. And as I suspected mine has now progressed into bones, one rib and two spots on pelvis, so time to move on. I was given the choice of Xeloda or Eribulin and choose Xeloda simply because I felt I'm not ready to risk losing my hair again so soon after getting a full set of curls back. So I'm on to pill popping and watching out for my hands and feet.
There is a worldwide trial going on at the moment, targeted therapies for HER2 neg which we have in Australia, so Onc is looking into that for me too. Let me know how you go on the Eribulin Livin as it looks like that will be next for me. Hugs to all
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I'd love to know more about this targeted therapies, isy!
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Good grief! Someone needs to invent a better way to reply to these posts cuz I read through and want to say things and by the time I get to the bottom chemo brain takes over.
Shetland! I am so excited for your dance opportunity. This made me so happy to read. I enjoyed the ballet. Part of it made me quite angry watching that crazy cancer dance around on stage. Out of control! Stupid cancer!
Isy, I am so sorry to hear about your bone mets and just so you know, I'd choose the same as my next treatment just for the hair! It shouldn't matter...it shouldn't matter, but it is a huge blessing. I am so glad to have hair again even though I must confess I do still sometimes hate this short do compared to my long pony-tail locks. I look horrible on a day at the pool (indoor swim party for my daughter today).
Gramen, good luck with your port. You will like it. Makes everything easy. Awhile ago I was having some kind of crisis about finding a bathing suit to cover mine as it protrudes so much on scrawny me. Here's an update for everyone. Tried on too many bathing suits, wasted too much life shopping. Told my 12 year old daughter she was to smack if I took another suit to a dressing room. Showed the world my port today and it didn't matter a lick to me or anybody. Yay, me!
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LOL! Me too kaayborg, I forget all the comments by the time I am ready to reply. Then when I try to go back and forth it gets erased! Anyway, I gotta say, even though I don't know you, you look pretty dang cute with that short haircut....Wish I could wear my hair like that but my ears stick out like a mouse. Also, good going on letting the port just hang out! Yes, Isy I too would be very interested in targeted therapy for Her-.
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Count me in..... Can't keep much straight. I put orange juice in my cereal bowl this morning, after shaking it up & looking at it. Next time I will need to take notes, being at the top of the page.
Kaayborg, I enjoyed the video. That modern, contemporary ballet is my favorite.
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Hi ladies, I know I keep repeating this, but so thankful to be able to communicate with persons fighting this disease....
Not much to report on treatment since scheduled to start in 1 more week...but wanted about sharing diagnosis with family / work...I told my immediate family mother/siblings and my partner and my best friend. My partner told his parents/siblings and they haven't reached out to me ...I guess is hard and they don't know what to say, I do see they call and text to check on HIM..
Work, based on experience from initial dx in 2014, I don't feel like sharing the details this time, so told my boss that I have a weekly apt and asked if I could work Saturday or Sunday to make up. Or worst case if I can work 32 hours....mentioned that down the road I could handle my apt during weekend ( praying I respond to chemo and one day I can get herceptin/perjeta and looks like that could be done during the weekend at my cancer center)...he asked if it was personal or medical and I said personal...and he said he would get back to me in a week.....
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Holeinone-thanks for a really good laugh about the orange juice. I have almost done that a good many times. The worse for me of late was running around the entire house in a panic, late for work looking for the cap to my water bottle, which I had already put on my water bottle. When I finally saw this, I thought for sure my hubby had played a trick on me. He hadn't. I cried on the way to work at my sorry state!
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woody. Yes that is the new med. He is not sure if it's new spots or dead cells, he didn't see them on the last two scans. He did not say progression so hoping it's just dead cells. He also says this new med did not cause hair loss. Try the new med and then scan in a couple months. Ugh....
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Livn, if t was a PET scan you would have known if it was progression or dead cell because it would have shown if the spots were active or not. I would hate to think that ge made you chane from a med which may be still working for you. But i am not a doctor, i hope it is the right choice for you and wish you a good response on it. Not losing you hair is an appealing idea loll. Good luck and of course waitng for your updates.
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Lolllll Kaayborg you are not the only one trying to keep up with all posts , i forget most of them by the time i am at the end of the page and i have to go back so many times that it gets ridiculous.
As for the chemo brain ohhhhh! Ladies i am way ahead of you , last week i cut up the onion threw it in the garbage then kept looking round and round in the kitchen for it ughhhh!
Kaayborg , you look great and very trendy with short hair , i love it.
For all the ladies i forget to post responses forgive me , i will try to focus more.
Sending love and kindness to all !
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Isy, i am sorry honey for the progression to bones. Xelda s a good choice , of course there is the hand and foot syndrom . It will not show right away it is cumulative. Just keep your hands and feet well hydrated avoid too cold and too hot. A lot of ladies were on Xeloda for a longtime , i hope you will be part of this group.
Wishing excellent results on the new med and much healing lights. Hugs.
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Doc wants to take me off Xeloda for now and try Tamoxifen. I've never been on it. He thinks because I'm fairly stable now, it would be a good time to try. So, I think I'll make the switch this week and give my hands and feet a needed break. If I can stay on Tamox May, June and July at least, I'll be feeling pretty good for our trip to Quebec this summer. It would be great to be able to walk around the city, pain free.
My onc is a fan of hormonal and targeted treatments. Will do chemo if necessary, but thinks often hormonal give a longer progression free response. Worked for me with Faslodex, but not so much with Femara/Ibrance.
We'll see. Hope my liver approves.
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I wonder now if hes jumping the gun changing meds but I will ask about a pet scan. I was hoping there would not be anything new while I was on chemo. I am heading back to my dark place, thinking of selling and getting rid of stuff. I have pain in upper stomach, it feels hard and I get full so quick. Anyone have this type of pain.
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Lvin, the pain you are describing, upper stomach, fullness, is what I am dealing with. My liver is still very swollen, my MO says it's not as "congested" as it was. My liver felt like ribs. My MO also told me to quit pushing on it.
I hope I am not freakin you out even more. Did you feel like this when you were dx? You are getting chemo now? I am on Taxatere, will have my 3rd dose in a week, and then they will CAT scan 3 weeks later. My #s have dropped, so I am trying very hard to stay positive. When do you see your MO again?
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well my liver shrunk, this ache started a mo the ago Dr says he didn't know what it could be from, maybe chemo. I need to stop pushing on it too. Start new treatment Fri might see doc then. I am going to ask why he chose the new med that he did instead of the others I read about.
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just got off phone with Dr office. Now he says pain from progression!;? Omg I'm freaking out. He never said progression last week. I feel like I'm going to be dead before the end of the year. I want to go curl up and cry. Wth!? Progression while on chemo? Ugh. Thought that was killing cells. I'm freaking out!!!!!
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livin- hugs. That news is always startling and stirs up the worst fears. Hang in there as there are still Meds to try. You and your team are on top of this. I hope new Meds on Friday beat back this monster.
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Lvin...I'm so sorry you got that news...and on the phone...ugh. Sounds like he didn't have the full report earlier, which was why progression wasn't mentioned. Arms wrapped around you. You said you're starting a new drug (can't remember which), Yahoo!! Sounds silly to cheer but hoping this will be the one that kicks those crappy cells to the curb!! Thank God there are other options! It's such a scary ride, but once the right meds start working & tumors start shrinking...there will be a moment to breathe!!! Holeinone...I also felt my liver all the time...I'd lay down on the the bed & rub & rub, trying to analyze it all. Stable for 2 years & I still do it. Taxotere is good ..it & if numbers are sliding down, yippee!!! As they say...stay in the moment!!!
I feel so out of the loop...besides not being able to keep up with the speed of this topic, I have the same "can't keep anything straight" thing going on in my head...if anyone knows where my Target card is, please let me know :-(
Gramen...I'm sorry I may have worried you, I was thinking you weren't starting treatment for a while longer. I have such hope that Navel/perj/herceptin will work well for you! SUE and I are big fans. Hair thins a bit & white count can tank (thank you, neulasta), but it worked very well on my liver tumors & SUE's lungs.
Sandilee...excited that you get some time off from xeloda! My onc took me off chemo after 22 mos & then perjeta at 30 mos, now just on herceptin/femara. I felt good so quickly...quite remarkable how (good) cells regenerate. Hoping Tamoxifen does a great job keeping you stable & your vacation is amazing!!! Plus...you can keep xeloda on the shelf :-).
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Livn,
I am starting to doubt your doctor's methods of coveying news to you. Yes prigression could make you feel fuller quicker and it could give some pain also. But pain sometimes cones from chemo also when it is killing the cells but only for few days after administration.
But do not freak out or think about death, carbo/gemzar shrunk my tumors only by 20% after six months. Then i was on aromasin for three months and i progressed like crazy my liver mets doubled more than 15 and i had spots all over the bones. Six mnths later all disappered.
So please do not freak out , you need to think clearly and make sure your MO Is taking all measures to insure you are getting the best treatment. There are still options and good ones. Just don't go to that dark place again and think it is all over. It is not, one of these meds will work for you. Ask for a CT/PET scan as a basline before starting your new treatment. Hugs.
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Sandilee,
Tamoxifen may be a good option during your break. I failed femara and aromasin. Now i have been on tamoxifen since one year with herceptin/ perjeta. It seems to be holding the ER+ side of my cancer.
I hope it will do the same for you.
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RonnieKay,
Thanks for the encouragement! I'm very hopeful about treatment specially after reading this blog.
You didn't scare me:-) Scary was one of the MOs I saw last month, she gave me a pat on the shoulder, said treatment would work about 6 months and I had 2 years. My neighbor almost fainted, and I asked her to go with me because she's a though lady that has dealt with colon and breast cancer.
Today did preregistration at the hospital to get port back. As I gave my info to the anesthesiologist, she was having a hard time with each answer...birthday: 1979, smoker: never; alcohol: nope, and so on...at the end she said: life is no fair. I just smiled and thought to myself, fair or not, this is my life.
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Livin - I echo Woodylb in that it seems you are going to really have to ask your doctor some clarifying questions. It does not sound like he was very clear with you. Also, Woodylb is a great testament to the ups and downs on landing the right treatment. You'll find it!
Gramen - I find it interesting and appalling what some ladies are told at dx. You simply cannot tell someone how long they have. I am a person who appreciates knowing average survival estimates, (even though they're old data), and then I go on planning to be above average b/c there is certainly nothing standing in the way of that being completely possible! My doctor seems to live on the sunny side, which I appreciate. I ask her if my massive and extensive mets could disappear. She says, "I've seen it before." I ask her how long I might expect to stay on my current effective treatment, she tells me of another patient who is on her 30th cycle. I'll take the sunshine and we'll deal with clouds when we must. There is plenty proof in these forums that 2 years is not the max.
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Kaayborg
Thanks for your words. I'm hoping I'll learn to get over these things and focus on the present...is just a process :-) BTW I didn't see that Dr again
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Gramem, i am happy you are not seeing this doctor again, we are all here all living proof that the date is oudated.
I d not want t intrude but can you fill in the information on your profile , so we can know what kind of cancer we are dealing with and so on? It would be helpful .
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I love, "We're all living proof the date is outdated!" Woody, my friend, I'm quoting you!!! Kaayborg...in 2 days, I'm 35 months past my 5 month expiration date :-). And dang it...this year I'm going to find a swimsuit I like that doesn't have to hide my lifeline!!! Thanks for the gutsy move..I may be a matronly age, but the suit I found that covered my port last year makes me LOOK matronly...yuck! Gramen...you share my youngest daughter's birth year...too many women on this road...but WAY too many young women. I hope your port landing goes very smoothly!!! Talking about people we encounter on this road...I have my favorite Echo technician...A) he's a muscular, athletic, gorgeous, black man (married to a blonde woman...my blonde daughter's married to a black man so we compare kid/grandkid pix).
he always gives me my echo #, cause he doesn't want me to have to wait (with the caveat that when I get the onc call, I'm surprised!) C) he says he knows that he's most at risk for certain diseases, but is most scared of cancer. He scans for many different reasons, but he says C doesn't discriminate...healthy, conscientious living doesn't mean you're exempt, and that the courageous people who see him humble him. He was so real...I put my arm around him as we walked out of the room and thanked him for being honest. So many times, as you say Gramen, people have a hard time grasping what we go through, it was refreshing to hear his thoughts. SO..I try to ask for him each time...it's kind of a crap shoot, but it's worked 3 times...hope I see him Friday! -
Sending you all a big cybernetic hug, and wishing this week treats us gently :-)
Your words and the information you share mean so much... I'm going to try my best to stay hopeful !!!!
PS working on the timeline, need to move treatment under first diagnosis, will get it right soon
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Dear LvinAZ44,
Thank you for reaching out to us for support, reassurance, advice and stories.
You wrote," just got off phone with Dr office. Now he says pain from progression!;? Omg I'm freaking out. He never said progression last week. I feel like I'm going to be dead before the end of the year. I want to go curl up and cry. Wth!? Progression while on chemo? Ugh. Thought that was killing cells. I'm freaking out!!!!!"
Others here have done a fantastic job of offering reassurance, advice and personal examples of beating the odds.
I want you to know that I heard your freak out and anger that you had progression while on chemo. And that your doctor said one thing at your visit and another on the phone.
It is totally scary to feel your body change and worry about progression, then to get news that it's true!
Lvin, it's really important not to mentally go to the "worst case" or "best case" scenario, because none of us, including you, have any idea how this is really going to unfold.
My wish for you is that you reach out and find supports to hold onto - our virtual hands, our stories, a more in-tune and communicative doctor, hope for an effective treatment, a mind-body or spiritual practice, and maybe some anti-anxiety medication.
This is really hard news to get, especially the way it was delivered. Of course, there will be freak-out. And it's good to sometimes step back from the panic and see that none of us know the future. And that those feelings will change too...if you keep reaching out.
Sending much loving kindness, Lvin,
Stephanie
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thank you all again for your continued kind and supportive words. I had my dr call me and we talked about treatments like gemzar and others. He said some were harsh and that doesn't necessarily mean better and since abraxane was starting to get to me he decided on ebrium. Not sure if that's how to spell it. After 2 spins we should know better what's going on. Hoping TM comes down. I'm just having such a hard time keeping going. He really is a good Dr and I like him. After I freaked out and said I'll be dead by the end of the year and was going to can out my 401k he talked me down and said that something will work we just need to find it. My disability starts in June, after that I'm going to find a PT job and chill, join a gym and hey it more to see this beautiful state I moved to. I find myself ashtrays trying to bargain or ask why me. Does God hate me? I am going to try alternatives and have been taking tumeric and will start either Rick Simpson oil or a cannabinoid this weekend. I'm willing to try anything. Best to you all and thanks again. I hope I will be here in two years giving someone else support.
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Lvin....you're so lucky to live in a sunny spot. My body loves the warmth of southern CA, where my son's fam lives...we may someday go back & forth, kids/grandies here & there. If you're starting a new tx, it may be best to take some time to let it start working, get a handle on ses, before adding many "alternative" therapies, that also can carry ses. I wish you much success on the next tx...and my suggestion....sunshine & walks...clears my crazy thoughts!!! (you really aren't searching for ashtrays, right....LOL!!!! Did spellcheck do its own thing??? Made me laugh!).
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ha. Ashtrays.. No that was supposed to be always. Yes I will wait a treatment or two, though I have already started tumeric. I just want to feel good again. Might try budwig also but not sure about the flax. The sun is nice now but in another month we hibernate from it. That's when my small gambling problem kuvks in, haha.
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Livin-When I was first dx with MBC my MO at that time told me that my life span with MBC was about 2 years. I'm at 18 months now and hope to be here much longer. My first 2 MBC txts failed and I also went to that dark place. But, I'm lucky to have a very upbeat MO now who kept telling me we would find a txt that would work-and we have. I hope it works for a long time!!! So stay the course so you can find the txt that works for you!!
Babs
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LOL! RonnieKay, you crack me up! I had a quizzical moment reading ashtrays too....And I am so ready for a warmer environment. Summers are glorious here but then the winter closes in. Although I love to watch it snow and see the Christmas lights in it, I am too sensitive to the freezing cold anymore. Gramen and Livin, Woody is right, plenty of women are living proof that those are just stats. I think Gramen as you continued to peruse the threads on here you will see that many women go through a lot of treatment and are still living very joyful, productive, fairly NORMAL lives. All of us have our down moments for sure, and I have certainly asked the "why me" questions. But there is no good answer and agonizing over it is pointless. To me, it feels a whole lot better to live in the moment knowing I am OK right now, today and looking forward to something. I think Ronnie has some good advice to let the Tx settle before you start considering alternative stuff. Doesn't flax have soy which you might want to avoid?
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ive read mixed things about flax for er/PR+ so I'm not sure about it. I'm going to get assume cannabis oil and try that. I will wait until I have a few new treatments under my belt first though I've been trying to be more positive, a lady I work with swears it has an effect on your body. I like me Dr too here never given me a time frame. I'm trying not to get stuck on that. I really like seeing layers here who are 3 plus years out. Gives me hope. Thanks for the replies u guys Rock!!
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Livin, I am planning on both of us to be here in 2 years....Telling of our txs & adventures.
Artist, I am with you, love to watch it snow, Xmas lights are my favorite part of the holiday. I live in Idaho. Beautiful state, but I can no longer handle the cold. I went to S. Calif. For a few weeks in Jan. I was in heaven. Feet in the sand, walking on the beach. That is my favorite place to be.
For the next 5 days, house guests, spending time with family. Keeping my fingers crossed I can give it my all. I will take the time for the afternoon power nap. So much I want to do, my energy level has been Taxatered out.
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Livin-My MO told me to stop eating Flax because of being ER+ & PR+. So, ask your MO on that one!
Babs
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Ladies, im hoping i can bug you with another question (not sure if stupid, naive, etc) but I'm finally going to start navelbine/perjeta/herceptin on Tuesday next week and thinking about ordering tonight the famous cold caps to see if i can keep this newly grown hair after my original treatment in 2014/2015...nurse wasn't very helpful said it was more of a hassle needing to bring someone to help, the expense, but didn't say there was risk or contraindications. ...
Heck, I've rarely splurged myself before, if no added risk I would like to give them a try...
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This is just anecdotal, but my wife has had a lot of success with the Penguin cold caps. She's been on Taxol since September and has kept the bulk of her hair. It's certainly thinned, but she has decided that the expense and inconvenience is worth it. We also used them during her initial diagnosis through her AC/T treatment and it was similarly successful. I've never heard anyone suggest there is any contraindication and the cancer center we currently visit has a freezer to enable their use and will likely start rolling out the DigniCap (a more convenient contraption) before long.
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Thank you Batfax! Sounds like Peguin is a good brand. There's one slightly cheaper but I'm not sure if I'll have time to research about them with my last minute order :-)
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gramen, my ? Is, will your scalp still hurt like it does when it's falling out. I just lost my hair, 2nd time, both times I could not wait to shave it because of the pain. I have always had a sensitive head. Maybe I am just a wuss.
Also, when you read about mets to the skull, could that be an issue with these. I know it's just hair, but being bald this time is worse. It screams, "Cancer is back & I am in tx. I have never worn a wig, only hats & beanies. I bought one, could not wear it. Maybe I should take my wig to my hair dresser & see if she can fix it so I would be comfortable wearing it.
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I have no idea about any of this but you piqued my interest. Have you seen this article? http://www.breastcancer.org/tips/hair_skin_nails/c... I thought it had a lot of interesting information.
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Hey liver ladies! When I was first diagnosed my liver looked like Swiss cheese. I get a ctscan on Monday and I'm worried. I discovered the liver mets after I went to the hospital with liver pain. It was awful. Now that I've done 4 rounds of chemo the pain is gone. I hope hope hope that the scans will show good things cause so far they've all been pretty horrifying
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Jill, hello.
Has your liver #s been dropping when you get your blood work?
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Holeinone....hope you're having fun w/guests (mine come Sun) and aren't forgetting power naps (with your phone/iPad under the blankie so no one knows you're blogging!) :-)
Jill...I'm just saying the chances are ver good that those tumors are being blasted!!!! We'll expect to hear that soon :-)
Babs....I always had guilt for not using flax in smoothies, etc (sometimes need more bulk), but no more!!!! Thanks for the er+pr+ perspective!!!
Batfax...glad you posted...much of our info is anecdotal, which I think of is tried/true in many of our experiences. So glad your love didn't have to go through the bald stage...I detested it! Gramen..another anecdote is most don't lose their hair on navelbine (this is when I say every body is different). I was on 22 months, w/her/perj and it took a long time til it thinned to a point I could even tell...although my hair is naturally pretty thick. I even had it colored in month 3...which made my onc crazy upset, but it did fine (I didn't/haven't colored since then). I'm definitely not saying not to use the cold cap and maybe you can't start using it mid tx, but you'd have time to research, I think. I had tx every week for 7 months...then 2wks on, 1 off. My onc approves of taking biotin, hair, skin, nail support & said anything over 2000 gets flushed, but I take one 2500 instead of 2x1000...too many pills).
Wondering if anyone else takes Mega Red (krill oil) for heart? I've been on it since 1st dx (09) w/herceptin...onc wanted me to take it & don't know if it's helped my echo readings, but maybe???? It sounds like I'm a pill popper...sometimes I feel like I am...LOL!!!
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just read through a zillion pages on this thread. Great info here but so much to process. I started with the he mets in my lung, a couple of years ago it showed up in the liver, and then most recently the right pelvic bone. Just started abraxane a couple of weeks ago though noticed that I was also on it from December 2014 thru July 2015. Not sure if that was on purpose or not so have a call in to my oncologist to find out. I do. Have liver pain and loss of appetite. I think I read on here somewhere that loss of appetite happens because the liver pushes against the stomach, leaving less room for food. I also find that food just doesn't taste good right now. Just started megace which is supposed to increase appetite. Sure hope it does. I feel like I'm starting to disappear and know I need to eat! Lots of folks here I recognize from other threads. Best wishes to everyone. Many different paths we are on and hope that we can destroy some cancer cells!
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Hey, Jillian. I see now we're liver pals. Your mets discovery is the same as mine, swiss cheese and all (perhaps with some added softballs). My pain went away with chemo, too, and first scans after starting treatment showed great improvement. Best wishes Monday.
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Jillian. Wishing you great scans on Monday!
Babs
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holeinone yes! My enzymes were above 220 and pretty much immediately dropped to normal levels. I still have some pain the the area. My doc said that it might be due to movement, which would be a good thing. Like the tumors just fall off and die?! Or...it's all in my head. My breast tumor still burns from time to time to remind me that it's the little you know what that started it all.
Thanks for all the well wishes from my liver sisters
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Thanks for the link kaayborg! Welcome Jillian, I do hope the chemo fills in the swiss cheese. Best wishes on Monday!!
ronnie, When I had to quit the flax I started using chia seeds in my smoothies for fiber and energy.
Gator, I hope the same for the abraxane and it kicks the tumors butts!
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Ronnie, you cracked me up yesterday. I literally had crawled into bed for my power nap, IPAD in tow. You had posted that just minutes before. Yes, enjoying the visit. They are staying at a hotel, working out perfect. I balked when my sister told me, but it was the right idea.
Jillian, good luck on Monday. I get a scan in about 3 weeks.
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Wishing you all a relaxing weekend. Thank you for your messages over the past few days.
Infusion port is in, same spot from the one removed 5 months ago.
Ordered cold caps, but thinking i might return them and take my chances with navelbine.
This wait for treatment has been so hard, and I realize I'm worrying about anything I can instead of focusing on the big picture, getting through chemo and finding one that works.
Going to try my best to make it to treatment on Tuesday without driving my family nuts and without a sore throat from so much crying.
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LOLOLOL....Holeinone! I'm cleaning for SIL & BIL coming tomorrow....notice how I'm cleaning (blogging!!!). Dang, my DH used to help so much but since he had hip revision (Dec) & I've been feeling good, he's useless...HA!!! Glad you didn't have to wash sheets for visitors...I did :-(
Artist...great idea on chia seeds! This is my smoothy now: pomegranate juice, spinach, kale, parsley, yogurt, banana, carrot, almond butter (sometimes), blueberries, maybe some apple & cucumber, cinnamon & coco hydro powder. DH & I drink it & grandaughter when she's here M & Tues. I have to remember to eat lunch...it fills me up.
Gramen...we'll be holding your hand on Tues...it will be good to finally go to battle on those crappy cells!!
Gator...odd onc didn't mention trying the same drug again...but we'll all hope it does the job twice as well the 2nd time around!!!
Prayers for clean scans & smooth treatments!!!!
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Ronnie Kay, I did talk to my onc on Friday. He didn't realize I had been on abraxane before when he recommended that I do it this time. Odd, but glad he admitted it. We've been together since 1987 so I won't fire him, there's not a lot I haven't tried. I did the red devil twice also. He said when I stopped abraxane last year it was due to peripheral neuropathy, not that it wasn't working. Also I was going to Norway and asked for a chemo break. He still thinks it is a good course to be on now, at least until the neuropathy gets bad. I'm good with anything that kills cancer cells though I do find abraxane rough compared to some of the other chemos I've tried, so, glad to know I'm not the only one who hides my iPad when I take my naps! LOL
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hello ladies, I started new treatment Friday, is supposed to be less harsh them abraxane. Yea right. I've been down for 3 days. Yesterday gene like I had severe flu. Will I ever feel better I'm going back home to Ohio in June to see family and my horse. I dint feel like I have the strength to ride him. Ugh. I'm going to ask Dr to find something else to use, this stuff is too harsh. I think it's called Ebrilium.
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sorry livin. I hope you turn corner soon.
I think your horse will be happy to see you. And I bet seeing him will be very therapeutic for you. Even if you can't ride him the way you want I bet just being together will bring you joy. Horse therapy is great.
Hang in there. And good for you for talking with your doctor.
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Livn,
I am sorry you are feeling lousy on Eribulin , it is a harsh chemo but supposed to work well on cancer. If it is tiring you so much , you must tell your onc definitely.
Like Left said even if you cannot ride your horse , being there and just taking a walk with would be very beneficial to you. I hope you sson feel better.
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Livin, so sorry treatment is making you feel so lousy and I do hope by June you'll feel like riding but even if not, like others have said, your horse will be waiting to connect with you. What part of Ohio? Central here. My mom is big into horses and volunteers at Marmon Valley here. Heard of it?
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he is in West Salem with my sister. I sooo miss the barn smell.
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the tech actually let me look at my ct scan afterwards and it did look less Swiss cheese like. Mets in my back might have been bigger. I imagine the doc will wait until my next apt (in a week) to give me the official results. So lame. Stupid cancer.
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Jillian-yes, stupid cancer!
Living-Def call your MO and tell him how you reacted to the Eribulin-maybe he can give you something to counteract the SE's. Hopefully by June you'll feel better and if not, I know your horse will be happy hearing your voice and that will make you feel better. When I had horses, their ears would perk up when their owner would come for a visit. ( I boarded horses on my property)
Babs
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Livin, I hope you are feeling better soon. I think the barn smell combined with seeing your horse will do you a world of good! Ronniekay, that sounds like a powerhouse of a smoothie! I do the frozen 3 berrie mix from costco, kale, chia seeds, almond milk, a little wheat germ for fiber and potassium. I love them for on the go food and breakfast. Very filling. Is Coco hydro powder because it has protein? That's a great idea as I'm a choco-holic!
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Jillian, sounds like the visual of the swissy liver appeared healthier. I think some one should call you & let you know, either way. Takes 2-3 minutes. Are they cutting out your Breast tumor ? or just leaving it alone ?
Gramen, we will be both getting chemo tomorrow, happy you are finally getting to start. I have not bothered to get a port again. I will if it is necessary, but I have fantastic veins. I hope the side effects are gentle.
Lvn, I am not familiar with your new chemo, or most chemos, except the ones I have had. I plan on a solid week of miserable, staying home, being waited on (lol), soup & ice cream. I think the A/C ( red devil ) made me chemo wuss. It was legal torture. Taxatere ( Taxaterrible ) is much easier.
Had blood work today. Liver #s down again :-). Tomorrow I will get the first full dose. Yah ! Wishing it would shrink, a little. Survived the weekend of family, dinners, photo taking. My sister crying after a little wine. Arrgg.
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holeinone, loved your cartoon. I'm on abraxane and it is throwing me for a loop. Have had two treatments and am just tired all the time. No energy or motivation to do anything. I hope I get good results when I have a scan. We deserve at least that when we go through so much .... No more tomorrow and then I get a week off! Woo Hoo
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well it's 4 days from new treatment, I can barely move, my fingers are so numb I have a hard time holding anything or buttoning my pants. Had to come to work have to get paid Ltd was denied, have to hold out til June when disability starts. I feel just awful! Called the Dr to tell him, maybe let the dose or find something else ugh. Not worth the 2 extra months a might get. Feeling like this, I know why people choose to stop treatments. Sometimes I think it would be best to vear over the yellow line, would be quicker. Ugh. I'm sorry, that's how I feel today. Hope u are all having a better day.
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(((Lvin)))
No words, just warm waves of comfort from California.
And a cloud angel to watch over you ~ love, Stephanie
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Livin - There's got to be something else for you. This treatment is messing up your quality of life. Hope you get some good options from your doctor and am praying for you hard. No need to apologize for your hopeless feelings but do stay out of the car. You've got good life to live.
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Lvin,
Sorry you are struggling right now. Wish I had the right, magic words to help you get through this major bump in the road. I worry/wonder when I will, or if I will feel like enough is enough. Right now I am hoping 6 txs of Taxaterrible will give me some time, quality time. I want to do so much, and I am willing to weather the chemo storm to get there. 3 days from now I might be singing a different tune. I had chemo today.
Please continue to post. It was what got me through the nightmare of chemo in 2013. I leaned on the ladies in a thread. They gave me strength, teased me, accepted me when I was hurting, emotionally & physically.
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Livn and Holeinone,
I am so sorry both of you are going through rough chemos. We all felt like this at one time or another. There are no magic words , only words of comfort and less heartache.
Livn, vent all you want and anytime but like Kaayborg said if eribulin ( halaven) is interfering with your quality of life you should discuss this seriously with your onc. It appears to mostly hit your nerves and i believe he must be informed if interferes with your daily chores.
Holeinone , i have taken taxoterrible and Adrya , the lowest days were 8 days after infusion . I took neupogen after infusions to keep my WBC in line. This bummed me few days . Then i felt ok. My tasye was ultered weight gain and neuropathy. My onc prefered me to gain weight rather than lose so he told me to eat whatever felt tasty for me.
I wish both of you better days and good response. And to all the other ladies who are starting new treatment i wish you all good luck and no SEs.
Loving kindness to all !
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Hi all, dropping by to say hi and send good wishes your way.
FINALLY had treatment today, not looking forward to SEs, but we are moving forward .
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Living-I'm so sorry you're having such a hard time. Sending you hugs! Try to hang in and ask your MO what other treatments he might have for you that are easier.
Babs
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hey holeinone! We are going to talk surgery after my 6th round of chemo. Then I imagine I'll have another pet scan. I've been told my onc is impatient and likes to know if stuff is working. Will it help if they take the breast tumor out? I know that sounds like a dumb question. I wish they'd remove the liver tumors but I bet that's not as easy. As anyone had their liver tumors removed
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Jillianclair/ I had a liver tumor removed surgically. You can do that or have an ablation procedure. I can go over them if you like
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ok sigh... I feel slightly better, I apologize for that dark post. I called Dr today he prescribed flexerall and a lidocaine patch? Um OK, if it works but I say let's talk dosage. I am not looking forward to weekend. That sh*t is strong after one treatment, mouth sores, Fi gets so numb,mouth so dry. Thanks again for being there sistas
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Lvn, I use both of these
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LVin, glad you are feeling better. I took halaven from dec 2015 - March 2016. Didn't hit me that bad but no good results so on to another chemo. I can't imagine se's so awful with just one treatment. Must have been a pretty high dosage. Hope your onc will decrease the dosage to possibly make it more bearable for you. Feel so bad that you have to keep working until disability kicks in. Vent all you want!! Lots of listening ears and caring hearts here
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seem to miss so much going on here with the time difference to Oz!
Livin, so sorry to hear how rough it's been for you. I had the choice this time of starting Xeloda or Eribulin so thinking could be a good thing I chose the X although not been feeling too good on that either. It's really been messing with my stomach, cramps and diarrhoea and so so tired. Have nearly done first two weeks so then I get a week off. Have become obsessed with lumps and bumps of my liver, sometimes it feels bigger, sometimes it doesn't, messing with my head more than anything, I just wish I could leave it alone!
Starting new treatments is the pits. Sending warm thoughts and positive vibes to all
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Isy- fatigue and gi issues area constant for me on xeloda. But after a few cycles you adjust to it. I don't remember what not feeling tired is like but I'll take that over the alternatives.
Hang in there
Livin- glad you spoke up.may you find a good balance soon. It sounds like your one is willing to work with you. Hang in ther
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Haha! Love the cartoon too! Good luck to you gals starting your chemo. May the SE's be few...Have a good break GatorGal!
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My mom just had her first bout with ascites last week. They drained 4 liters from her. The liver mets are the cause of it. I'm not sure how big any of her mets are (she kept me out of the loop on a lot of this until 2 weeks ago) but right now she is still having trouble eating and drinking.
She hasn't ate much in the last few week or drank much of anything. Maybe less than a teaspoon of food in a day and probably less than 16oz of water/Gatorade in a day. Because she is having trouble keeping food and liquid down, she isn't taking her xeloda. Does anyone have any tips to help her get the nutrition she needs?
This topic has been a great help. It gives me hope that my mom could get better
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Factory girl,
I am sure you have heard of Ensure, and products like that. Many different ones on the market. I put protein powder in my smoothies & milk shakes. This is my 2nd go around with chemo. I tend to lose weight quickly. Hard to feel hungry when you feel horrible. I have to force myself to eat. Keep offering a variety of foods, small plates, fruit, cheese, whatever veggies she likes. My staple is avacado.
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holeinone
Thank you. I'm going to try that today. She is going to try going back to work today and I'm packing her lunch (well snack bag since she is only cleared for short shifts).
I have protein powder for smoothies. I'm going to try and get her to drink a little. She thinks my green smoothies look weird but peaches have been her go-to fruit this week. I'm gonna try to blend some fruit, protein powder, and coconut water this morning and see if she will try it.
Avacado is a good idea. I just need to learn how to pick them better lo
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Good morning, dear yogini, you can ignore most of my recent post at your thread...because your mother is out of hospital now and going back to work.
Holy smokes, how amazing is that!
I too have appetite and weight loss and struggle to find foods that taste good and are nutrient dense. As the liver changes, it can be difficult to digest fats and protein. Also, it and the ascites can compress the stomach, making large meals impossible.
Smoothies are difficult for me, because there's too much bulk for my tiny tummy. Better for me are healthy meats, eggs, vegetables and some grains and beans. I don't seem to like sweets, but love flavors like sour and salty.
It will be interesting to see what your mother enjoys and can eat. And how you can help her keep up her strength.
It sounds like you live nearby and are connected, but that she's only recently opened up to you about the seriousness of her cancer situation. You're doing great in learning quickly and supporting your mom in ways that feel good to both of you. What a blessing you are!
Yogini, may I suggest balance poses now? And maybe a few warrior poses to keep you focused on both caring for yourself and for your mother too. And remember to relax in Savasana.
Sending much love, Stephanie
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hi all!
been away from boards for quite some time...coping with severe tiredness and weakness from chemo. I missed you all. well, today, I received the good news that I was waiting for past 3 months, had my first scan after stage 4 diagnosis few days ago and got the result today, the multiple lesions in both my lungs and liver are shrinking in size and number. it is after 4 cycles of carbotaxol. my onco said results are not "marvelous" but not bad either. after dreading progression due to the pain and tiredness I have, this news came to me as the most pleasant thing to hear. but my onco's decision has made me nervous. I have responded to chemo, ok, not complete but a partial response, but she has switched treatment plan from carbo./taxol to carbo/gemzar. I told her that I have severe body aches from taxol but not that severe to stop treatment but she said quality of life should be good so lets move to plan B which is carbo/gemzar. do you ladies believe she has made a good decision? taking into consideration the fact that i am responding to my current chemo plan.
yogi84, i hope and pray your mom recover soon and enjoy every food. i don't want to see my mother and every mother in the world suffer like this.
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MaryK! I am so glad to see your post. I had been wondering about you this weekend and planned to pm to check in on you. And I am so VERY VERY glad to hear that the results of your scans are so good. I am wondering how your onc did not find them marvelous. Isn't shrinking always marvelous? It's marvelous to me, anyway. I think the decision to switch chemo is totally up to you in this case. Only you can judge if your quality of life was reduced enough to warrant the switch. I assume you would have the option to go back to taxol if you wanted later since it isn't resistance that caused the switch. More experienced ladies, please correct if I'm wrong.
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lollll Kaayborg no you are not wrong , she can always can go back on taxol alone. I hope you both keep getting shrinking news.
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longtermsurvivor
It is all good, my friend. I was in a pretty dark and stressed out place this weekend. Sleep deprivation, back pain, and PMS mixed with anxiety make for a messy situation from time to time. Your advise did not make me feel like she was going to die (but if I can't get her eating/drinking to rebuild her strength her situation will get worse).
My mom is in more of a doom and gloom mindset, but her oncologist is to blame there. He is a very intelligent man, but his bedside manner is terrible. For example, a family friend went to see him. She did most of her treatment about an hour away in the city, but in the winter, her city Drs arranged for her to go to the same oncologist my mom sees. (They are affiliated.)
After she was found NED at the cancer center in the city, she has a follow up with my mom's oncologist (since he did a few months of treatment with him) and he told her she had spots on her lung and would die. She was devasted. After a second opinion, her spots were congestion from asthma.
My mom has told me that this oncologist sometimes leaves her feeling like he isn't listening to her concerns and feelings. I just can't stand for that. She and I are very close. I split my time between her house and my boyfriend's. She has my brother at home but he doesn't help with much (a mixture of autism, obesity, and pure laziness).
Mom went to work today for 3.5 hours but it took its toll on her. I talked to her dr today and he thinks the ascites could be coming back. Plus she is showing more signs of jaundice. He is also concerned with her not eating/drinking and is probably going to send her back to the hospital for IV fluids. We go back to see him in the am.
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And thank you for the asana ideas tonight. I could use a few after my day at work and weekend full of worry. Namaste
MaryK,
Thank you for the positive thoughts. I wish you the best of luck on your journey with this. -
MaryK. That's such wonderful news!!! Time to do your happy dance😀😀😀
Babs
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Factory girl,
I am having appetite problem as well, what I used to like-cant even to look at, what I don't like - I still don't like ugh :-). I am on a very unusual protocol (Ibrance, Femara, Avastin and Opdivo). Today my daughter made me an avocado, almond milk and a bit of brown sugar (optional) smoothie. It tastes delicious, like a very good ice cream, can't even begin on nutritional benefits. I really hope your mom would like it. And may I tell you, it's already good when its coming from a loving hand, like yours. Thank you for being such a good daughter.
Good luck!
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cyber hugs to all
kaayborg! I was thinking of you when my onco told me about gemzar as the next option and felt relieved immediately thinking that you have been taking this drug for the last 9 months with good results. But my confusion about switching treatment is now resolved (thanks to woody ❤). We are in the same boat with TN and early relapse (mine came back exactly after 2 years). So i hope and pray we keep sharing good news with each other for many years to come.
thanks babs! My happy dance (which i actually did) made me take 2 painkiller afterwards but i managed to shake that poor booty 😁
i have another question for experienced ladies, my first BC was node negative stage 2a but it recurred and spread to my lungs and liver. My question is both times i had not any of my nodes swollen or positive for cancer. Not a single one. Everything is normal in size shape and texture. Bloodwork prefect except for those lesions in my lungs and liver. I wonder how could it be metastasized without any swollen positive nodes? My breast looks fine as well.
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Wonderful MaryK! I am the same as you on this one with perfect blood work and zip zero on lymph node involvement (stage 1a, no less, one A). Cancer can spread through the lymphatic system or the circulatory system. For you and me it looks like it took the blood pathway, which is often undetected in blood work at the initial diagnosis but shows up eventually, as with me in elevated liver enzymes a year later. Crafty Bitch! I'm with the rest of you who commented a while ago about the swearing. Having not done so much previously, I can't resist the satisfaction of cancer swearing. Ha, take that! As it it cares but I don't care if it cares or not. I'm gonna say it anyway.
As for me, my friends Gem and Carbo continue to kill my platelets. I passed for treatment today but I say I've got at best a 50/50 chance on scraping by next week. Lately they've been plummeting between Day 1 and Day 8 but historically there have been a few times when the go up instead so here's hoping for the reemergence of that trend.
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Factory girl, I am impressed you mom is still working...
Kaayborg & Mary, if I had seen your bio, ( before ) no nodal involvement, I would thought Ah, one of the lucky ones. My stage 3 dx with the axillary nodes being 2-3 times larger than the breast tumor. Bursting with Cancer & growing on the outside. I was warned, not a good sign. Also excatly 2 years after last rad tx. I did take Arimidex.
IPAD acting up BBL
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Ellamilana, how did you get on Avastin and Optdivo? Are you in a clinical trial?
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No, its not a trial. My MO pushed my insurance and Opdivo supplier
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Wow, Ellamilana, that is very interesting. Nice going, MO! Sounds like a great advocate. How is your regimen going? Do you think those meds are helping?
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kayyborg, That's funny about the swearing. I too seem to have developed a cancer potty mouth. Suddenly it just feels GOOD to blow off some verbal steam! I hope you bounce back for next week! Nice to see you back MaryK. My breast actually looks fine as well after several months of Tx and the nodes have shrunk but did have 2 nodes involved.
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this goes out to all my super heroes here on these boards. love you all.
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We think you are a superhero too MaryK and we love you right back !
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lol same is the case with me kaayborg! but the pain (mental) needs to be relieved so i burst out my anger verbally. thanks Artist, this disease is kind of "multifarious" according to my research. the day i was diagnosed with stage 4 TN just 2 years after being stage 2A , a woman came out of the onc's office with a big smile on her face and told me that she is a 10 year survivor of TN stage 3.
praying for a remission for everybody
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thanks Woody,
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Truly, everyone on these boards is a SUPER hero!!!!!
Babs
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Thanks Ladies for the boost..... Unfortunately, today I feel more like a Super Bitch! Just one of those days when I have my doubts about the medical commmunity, I feel disgusted with my employer, I have a now X friend I want to tell to stuff it.....But oh that's another thread! Hahaha Hope everyone is well today!
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Just got my TM's back -down again this month-Yes!!! CA15-3 went from 70 to 46 and CEA went from 18.1 to 12.7. We delayed my scans from the end of May to the end of June since my TMs are always very reliable.
Babs
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Awesome Babs!! have a joyful Spring!
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Great news Babs keep going for more good news !
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Babs,
Mary, thanks for the quote. It's true, we are all superheroes. Hard to hear those words of 10 year survivors. I just deleted the 10 year stage 3 survivors thread from my favorite box. Of course I am happy for them, but don't need another reminder that I am no longer part of that group.
Artist, sorry you had a bad day. Tomorrow will be different. Or you could Cancer cuss that X friend.
Hello to all.
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beautiful quote MaryK, so fitting for all of us here.
Artist, you definitely find out who your true friends are at times like this and it's sad to lose a friend but you need to be ruthless and cut the negatives out of Your life.
great news Babs! I saw a different onc today which happens in the public system here. You often never know who you're gonna see but it can be a good thing to get a different perspective. After my last doom and gloom session and being told it had spread to bones, doc today told me not to worry at all, they were tiny spots and liver is all stable which is the main thing. Think the other doc was too quick to change my treatment. Hey ho, going ok with Xeloda so far, just a bit of diarrhoea and tiredness which is easy for us power women to cope with.
Back to swearing: my sis is a great swearer as she does it so rarely it has a real impact when she does. I hate the way some kids these days swear every other word, it just becomes meaningless. Because I'm British I tend to say "bollocks" a lot, the Aussies think it's hilarious.. Have a great weekend everyone
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Yes, you are right Isy time to cut the negatives. I have hung around for way too long while she dangled a carrot and then never followed through. I just have trouble believing I mattered so little to her after 10 years. Oh well, gives me more quality time for the true blues....Or I could take Holeinone's advice and Cancer cuss her! Haha! That would feel good for a few minutes. Today was somewhat better and it is Friday! Holeinone you just have to start hunting for Stage IV longterm survivors! Have a great weekend all!
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I know this thread is not for family members so bear with me. My mom was diagnosed stage IV in 2014 with HER2+ mets to distant lymph nodes. She did chemo and herceptin/perjeta and was NED. She was on nothing after, which I found odd but I think it may have been her choice since the chemo itself was an uphill choice to begin with, having done it before years prior and sworn never again...
Now she has mets to her liver which were stable early this year but now show some progression. She is now on herceptin/perjeta. Anyone have good results with targeted therapy on liver mets
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Aimadi-
First feel free to come and post to this forum any times. It has a lot of good info and support.
Second- I had good results with liver mets with a combination of oral chemotherapy Xeloda. And a targeted therapy ( tykerb and later Herceprin). There are lots of options open for Her2 + cancer. It's a question of if your mom wants to try them. I've basically been NED since 2012 on my current combination of chemo and targeted therapy. There is hope. tDM1 or kadcyla is another option. And there are new clinical trials open. If your mom is up for it there are lots of options.,
Hope this helps
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Hello all. Just read a bizzilion pages of this thread like a novel I could not put down. A few thoughts.
CBD Cannabis oil has reduced nausea and improved my appetite. I got my NM Medical Marijuana card mostly as joke (if I am going to have cancer might as well enjoy it). I wasn't trying to get rid of nausea, looking for possible anti-cancer benefits if anything. But what a blessing to have an appetite. CBD has no head high and works for me in low doses (10 to 20mg).
My oncologist says that you don't know what tumor markers mean for an individual until you have monitored them while doing scans for a couple of years. My tumor markers went up a bit these last 3 months as tumors shrank. Lagging tumor markers and flares are common. I am not the least bit concerned neither is onc.
I've also heard from more than one doc and person with cancer, that tumors can flare with inflammation and release the cancer markers as they die and the lesion heals. One of my oncs has said that she is increasingly slow in changing meds because of this delayed "objective response" of some treatments on some cancers. This is very specific to a treatment and an individual, and she noted how scary it is to wait. But its a thing.
Also the error in a typical CT scan, as I understand it, is +/- 3mm. In at least one study, they could scan the same tumor twice in the same day and get results that differed by up to 6mm. If so, that means a stable tumor can appear to "grow" half a centimeter between scans.
It's worth asking the radiologist at your medical center whether they test their equipment for accuracy and what kind of accuracy they are getting. You need this information to evaluate radiology reports. The radiologist at my institution writes his reports as if he is accurate down to 1mm. He has no study to support that and I doubt it. I've had a lot of contradictory scans and tests in just 3 months. More than one radiologist or doctor has asserted confidently, based on imaging, that this or that is so when it was not.
In a recent episode of This American Life there is a chapter called What You Don't Know. It is a great story about a granddaughter trying to understand her grandmothers cancer prognosis, but it's also about how getting terminal prognosis effects the mind and how that influences the outcome. It kept coming to my mind as I read, in pain, as a few folks on this thread relived my diagnosis/melt down last December. I recommend the short podcast to everyone but especially you guys who have faced scary setbacks.
This group has better choices and is better informed, better supported and fighting harder. We will survive and thrive.
>Z<
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Almasi,
My second diagnosis was liver and bone mets. I was on Herceptin/taxol/perjeta for six months and i became NED but i continued on herceptin / perjeta alone till now since november 11 / 2014. I think your mom should wait and see if herceptin/ perjeta will do the job again , if not like leffoot said there are other options for Her2+. I wish your mom good luck and hope she soon goes back yo NED.
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Zarovka,
Welcome to the thread, and thank you for your post . You seem to have everything under control. Cancer is very diversified we actually don't why each cancer behaves differently. I personally never had a false positive or negative on a scan or PET scan. My tumor markers are not very reliable , check them but do not count much on them.
BCD and marijuana are not available medicinally in my country and never had to use nausea meds . It was given to me on different occasions but never had nausea. So i did not use them.
Quality of life is very important in stage IV cancer , i believe it helps us fight this thing and live longer. Also a good spirit and you seem to have both.
I hope you will continue to give us good news telling usthe disease has retracted. Welcome again and sorry you are here.
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Thank you for your responses. At her stage 4
diagnosis she did taxotere with herceptin and perjeta. At her initial stage II she did carboplatin, taxol and herceptin.
I know for sure she will not do another taxane or broad spectrum chemo. She would rather die. She did not do well at all. She even has a lot of side effects with perjeta.
So I really hope herceptin and perjeta work. I already lost my father.
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Thinking & wishing the best for you all.
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Happy mother's to all of you lovely ladies ! 🌸🌸
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Hi all,
I was just diagnosed with mets to my pituitary gland(really????), liver and bone. Meeting with MO tmrw morning and wanting to go in with questions and suggestions. I originally was on TCHP, diagnosed with ER+, PR+ and Her2 +. The tumor in my pituitary showed ER+, Her2+...I will be a starting Herceptin, Perjeta and something else. The something else is what I am questioning. What has worked for you? Should I try Taxol this time? What about Xeloda??
Thanks for any suggestions!
Kathy
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Kthielen, never heard of that before. I am new to stage 4, no advice, especially regarding Her+. Lots of very knowledgeable ladies here, hopefully someone pops in with some insight.
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Kathy, ask your mo about navelbine. I just got started on it along with H/P. I've had 3 weekly doses of navelbine and very little side effects. Praying that is working, will have scan in a couple months.
A few ladies here had it and mentioned good quality of life and it working for them!
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Hi Kathy,
Welcome to the liver mets thread, I hope you'll find home here.
I'm curious, what is the third agent that your MO prescribed?
In newly diagnosed hormone positive mets, it's usual to start with an anti-hormonal aromatase inhibitor (Aromasin, Arimidex or Femara) perhaps combined with Ibrance or Afinitor, rather than chemotherapy. The hope is to control the disease with less aggressive treatments (we hope they're effective, but may have to give them 3 or more months to know).
Many with mets say living with mets is a marathon compared to the sprint of earlier stage disease and treatment. I've taken to calling it an obstacle course with ever new obstacles to confront and overcome.
Kathy, please let us know more and we'll help how we can.
Also, I assume that you'll receive Zometa or Xgeva for the bone mets? You didn't mention it?
Sending warm rays of healing light for you, Stephanie
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Kthielin,
I got taxol/herceptin/perjeta when i was first diagnosed with her2+ i am also ER+ which did not work to hold my cancer for more than 3 years. After three months on HTP i was clean with no evidence of disease till now. I was on taxol for six months weekly low doses and then herceptin/perjeta till now every 21 days. I get Xgeva for bones .
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Welcome Z, Lots of interesting info and I plan to look up the episode you noted. Your comment on thriving, may it fly from your lips to God's ears....Welcome also Kathy. Afraid I don't have any advice for your situation either but hope you find the answers you seek. Almasi, I hope your Mother as well finds something she can tolerate and it works wonders. How stressful for you when you already lost your Dad. I'm so sorry.Hope you all had a lovely Mother's Day and thank you Stephanie for your never ending healing vibes. Woody, I hope you are doing well!
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I just read several pages of this thread to get caught up, and it felt good to be back here with you all. I tend to stay on the computer with BCO too long, and miss out on getting things done or getting sleep. So sometimes I just stay off altogether. It would be better if I could find the right balance. And sometimes I don't want to think about cancer so much. But then I start feeling isolated. Anyone else have a similar experience?
It's interesting to hear several of you--I think it was kaayborg, Woody, Holeinone, and Ronnie--mention the troubles we sometimes have with thinking and remembering clearly. I'll add trouble with words. My brain and my words don't cooperate well these days, and I hear myself babbling and struggling to express my thoughts. I'm guessing it's a combination of stress, too little sleep, and estrogen deprivation in my case. What do you think?
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Shetland,
Lollll you are not the only one, we all have the same problem . Sleep deprivation will do a lot , plus all the meds we have been on since all this started. Chemo is the worst add to it the fact that you have no hormones to speak of in yourentire body. Unless you symptoms are accompanied by headaches and blurred vision then there is nothing to worry about . Itis just the SEs of all the meds we are on.
But i do things to help me get my memory better. I downloaded apps like peak and lumisoty on my Ipad and it has all sort of brain excersices to boost memeory, focus, mental agility , problem solving , emotions. It is not bad it helps you stay more focused. Anti hormones and cancer treatments tend to give us an inside body of an 80years old with the look of our age lollll this is terrible. So chronlogically we are old but not actually.
So do not worry you are the only one, we are all in the same boat . Missed you on the boards.
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Artist,
I am well so far , i was wondering how you are and how is faslodex treating you. Hugs.
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Holeinone, about the sensitive head and the wig. My scalp is still sensitive over a year PFC. If the wind blows my hair, I feel it. I looked at my wig shopping notes, and they say that the most comfortable kind of wig cap is monofilament--smooth and cool. It also gives the hair realistic movement. And yes, a good hairdresser can work wonders. My wig looked ridiculous until I got it cut, and then it looked pretty good. (I only wore it a few times because I found I preferred pre-tied scarves and caps.)
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Woody, yes, I tell the physical therapist (frozen shoulder, almost all better) to treat me like he would an eighty-year-old woman. People used to think I was at least five years younger than I am, but I doubt they think that any more. The treatments wear us down. I think my face looks so tired. One of my doctors (not for oncology) wanted to send me for a brain scan because I couldn't remember another doctor's name, and I was having trouble following what he said, and taking notes. I told him it's just the drugs and the insomnia. I had to decide to be patient and kind to myself, and try not to get frustrated when I can't remember a name or something. Oddly, I seem to do fine remembering choreography. It's almost as if the deficits in some areas have freed up other areas.
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true i seem to do better also in some arease not others memory is fine but i do not seem to remember words vocabulory and things like that . It takes me a while to remember , i have to use ruse on my brain to remember. Coordination in the body is slower also. The worst though is lack of sleep . I take two kind of pills to get few hours of sleep and both cause memory lapses. But without them i do not sleep at all. Nothing works. I try to rest in the afternoons , not sleep just rest. We have to work around it and do the best we can aslong as we are alive. I accepted this fact a long time ago life after cancer will never be the same but i am thankful i am alive and as functional as possible. I don't think about all this anymore it will only frustrate me lolll. I would rather not be feeling all this.
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Hi all! I have a plan now...
Having an MRI next Wed of my liver per my rad onc suggestion(he believes he can do Cyberknife to that spot as well as the pituitary gland)
Start Herceptin and Perjeta on Thursday the 19th
Have Cyberknife of pituitary gland on Friday the 20th(5 days/30 minutes each time)
Start Taxotere, Herceptin, Perjeta on June 9th( MO didn't want to add the T during radiation)
He did mention starting Zometa for the small bone spot but after radiation as well.
I will start on an AI at some point as well, was on Anastrazole so will switch to something else.
Kathy
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Kathy that's great!
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I have a question about targeted therapy to the liver...I'm not getting a lot of info when I ask my MO...is it because I have 3 involved lymph nodes? I was hoping that targeted therapy would be an option if chemo clears those lymph nodes or if those can be removed as they do with the axillary ones...?
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Gramen,
Hereceptin/ perjeta are targetted therapies. If you meant by targetted, invasive procedures, usually very rarely liver mets are operable. Your doctor will decide if you qualify for such procedures or not. When there is more than one tumor it is not advised. I hopethis answered your questions.
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Thanks Woodlylb, this helps
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Gramen,
I'm not sure either! I'm just going by the suggestion of the Rad Onc. And I guess in my mind if I get chemo and Cyberknife radiation it will be double as good!! Lol.....I will keep you posted after the MRI:)
Kathy
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Woody, that's terrible that your sleep is so poor. Could a palliative care doctor or a sleep specialist offer any help?
Kthielen, wow, that is quite a plan. Maybe aromasin or tamoxifen in the future, eh?
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Hi,
I'm new here. Not to BCO but to this thread. Diagnosed Breast Cancer 2012, bone mets last year, and now liver and lung mets yesterday. I'm more worried about liver mets. I've had lung nodes since 2012, so they are slow growing though recently a node grew 2 mm since January but my liver met grew 1 inch since January. Going to get a liver biopsy and then start Xeloda or Abraxane. Not sure which yet. Leaning towards Xeloda.
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I am sorry Cjanet you joined our club. It is probably a good idea to wait for the liver biopsy to come out before deciding what treatment to take. You cancer status may have changed in this case your MO. Will advise what would be the best treatmenr accordingly. I hope you soon find the right treatment. I wish you contineous improvement and peace of mind. Welcome to this thread, i hope you find it supportive and helpful.
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Welcome, cjanet. I'm sorry you had to join the liver mets thread. When is your liver biopsy?
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Shetland, All of that describes me to a T....I stay on too long sitting on my bottom or stay up too late and feel lethargic the next morning. Y=Then I struggle to catch up with everyone. Also the same about not wanting to dwell on cancer 24/7 but feel that most of the people surrounding me just don't understand or don't want to talk about it at all. I forgot the words to a lot of things lately. I find myself stopping to think (HARD) about what I ma trying to say. People often fill in for me which makes me feel OLD! CJanet, I am sorry you have a new blow to the list. I hope your biopsy goes OK and they get you on a treatment quickly. Woody, the Faslodex is going OK aside from the 80 year old body you describe! My joints ache all over. It doesn't help that I have an office job. But if I happen to be there in the fall I asked them for a standing work station at my desk. I have a check in appointment tomorrow, labs ect. Then a new scan in June.
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Shetland, me too! Balance. I actually think it is the key (and challenge) to absolutely everything in life. If I could just find and maintain the correct balance!
Welcome to all those new posting here of late. I've been reading and thinking of you but don't have anything to offer you from my experience with treatments so far.
Did I mention I flunked chemo again this week? Of course I can't remember if I did or not. Platelets so low I'm not sure they'll recover by my next infusion on the 31st when we try another reduction. Upside: I am feeling super fine! Also, I think I'm really cool b/c I can give myself a shot (doing Neupogen and Neulasta now). I laugh at myself for feeling so proud. But I am!
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hi all. Have had 2 treatments a d markers up again, liver function almost normal. Wth why won't the stupid markers go down. I'm so tired of this. Nothing is working!! I'm going home in June to see family and horses. Maybe talk to them about the value of continuing treatment. Ugh.....
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Dear livinAZ -
Can you remind us all what treatment you are on? (I'm as brain dead as anyone on this thread.) Cancer markers are a lagging indicator for many treatments.
>Z<
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kaayborg, i had the same problem when i was on carbo/gemzar i lagged in session and ended up at lowered dosage and cancelled 2 infusions. They really messed my blood up. So i i hope your blood recovers soon and you feel better so you can continue treatments. And yes you are a hero for giving yourself the neupogen shot , i could never do it. Feel better soon
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Livn, the markers go up sometimes from the treatments, specially if you switched meds fast. Also, can you tells us what treatments were you on? Or fill out the treatments in your history. Why do you think , you want to discuss their value?
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kaayborg, I'm with Woody, you are a pretty tough chick to give yourself those shots! Lvin, Don't jump the gun and assume nothing is working! Many people have TM's rise when they have good scans. Hang in there and let your Dr's figure something out. Tomorrow is another day.
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i am on eribulin. The ma time me the TM went up, it went down 50 points, not what I hoped but it went down. That's after just one treatment. So hoping they drop more. The side effects are horrible, no hair growth and still with the constant watery eyes. Ugh. This is probly the worst se. Dr says be patient we will find something.
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Hi, cjanet! Sorry to hear about the liver mets. If it helps, one of my fave factoids from this board is that you only need 10% of your liver to function! And it regenerates! Best wishes on getting rid of the bad cells!
Woody, you so rock giving yourself shots! That is a very cool thing.
I haven't checked in a while because, life. I'm at the beginning of my second cycle of chemo and things are going much better than I hoped. I've lost my hair, but I'm actually kind of enjoying doing scarves this time. I might even get crazy this summer and just go bareheaded at work one day! If it doesn't bother me, I don't see why I should worry about anyone else getting freaked out.
My first scan is June 8. I'm already getting nervous/excited. How do you all manage emotions/expectations
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hi all!
kaayborg! You are my hero..how do you manage to feel super fine on this horrible regime? I had my first carbo/gem a week ago and it has knocked me down..swollen painful throat, headache, weird feeling in the ears, zero energy and list goes on...
Lvin, Mattie hoping for the best results for both of you.
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Sending good vibes to all!
Made it to the second round of herceptin/perjeta along with the weekly navelbine, but white blood cells barely passed today so next week might have to take a break...oh well, hopefully the schedule can be tweaked to fit neulasta. ...ugh...that also means I can't travel as I had planned...bright side is that my mom and 7 year old nephew will be visiting me during his summer break...
Did I read something here about liver tumors hurting during treatment? I'm starting to feel some mild pain...but sometimes wonder if it's anxiety ...
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Lvin, I am sorry that you are continuing in limbo. Liver function being near normal is good so hang on to that in the meantime. Enjoy time with family and your horses but please don't give up yet. I believe there is something for you. You just haven't landed it yet.
Mattie, I was so very happy to read your post. The next treatment I have lined up will include hair loss. I did scarves happily enough the first time but most comfortable was always bald or a loose knit cap...not the most attractive look. I never did this in public but always soon after getting home from work. Comfy clothes and head gear by 8pm or 7. When I think about what I hope will be years (rather than just 4 months as before) of being without hair, I'm not sure I can take the scarves or wigs that long. The plan is to brave it. I worry most about making others uncomfortable to be honest. Or, I think I'm being honest. Cancer has taught me that I am much vainer than I thought. I like what you said here: If it doesn't bother me, I don't see why I should worry about anyone else getting freaked out. I am going to try to remember that.
MaryK, you must remember I am supposed to have two treatments in 2 weeks time and 2 weeks off but lately, I've had just one at a reduced dose followed by 3 weeks off. This has happened at least twice. Old energy is emerging...so super swell. Normally, I do feel pretty good (but not super well) but I did have tinnitus, not ringing but the heart-pounding sound in my ears earlier on. Is that your ear thing? Drove me nuts some nights but other times not so bad.
Take care friends!
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Hello All,
Welcome to cJanet......
I am in a total panic. I had a CAT scan yesterday. Got the results online last night. Liver is not responding to tx. More lesions. My liver function #s kept going down, so I assumed things would be positive. Also, now appearing in the spine. L10? The report said pathological fracture. Anyone know what that means? I see the oncologist tomorrow & supposed to have Taxatere # 4. I do not think she will continue with that now. Be back here tomorrow night to let you know, hopefully I will have some better news & have calmed down a couple of notches. Thanks for listening......
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Holeinone - Your scan results are outside my experience, but the panic is not. I am glad you see your oncologist so quickly.
>Z<
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holeinone-
Hugs. Those results are scary. I am hopeful tomorrow will at least give you a plan that helps ease the panic.. Will be thinking of you.
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Holeinone, no info for you but I will surely be thinking of you today and hope you hear from your onc something that helps..
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Hello. I am new to this thread. Dx in 1999. Going through my 6th battle with BC now. Liver mets dx in 2014. Currently on Navelbine treatments. The hardest part for me has been the nausea and vomiting. I was on Gemsar and then Ibrance. The liver mets progressed when I was on the Gemsar. I couldn't tolerate the Ibrance. Just been having problems tolerating any treatments lately.
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Hi ladies, thought it was about time I checked in.
Welcome to Melanie and Cjanet and all the other newbies!
Holeinone, I am so sorry! I am glad you are getting in to see the onc quickly though. I will keep you in my thoughts and prayers this morning.
Things are going ok around this direction. I just completed my 9th cycle of Ibrance last night and then see my onc next week, hoping for a new set of scans. Just wanted to let you all know I am always thinking of you !
Alissa
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melanie
Hang in there. Sorry you have had s run of bad luck. We are all here for you.
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Hi Melanie,
My name is Melanie also. Welcome to the boards. You will find a wealth of information and support here. I have liver and bone mets. I am about to start the Ibrance/Faslodex combo.Why could you not tolerate Ibrance I hope your medical team finds the right treatment for you soon. Keep us posted!
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Hi ladies,
I just came off Ibrance. I found it easy to tolerate but my cancer grew on it so not working for me.
Am I reading right, that some of you w liver mets are working? I hope so, as I currently work and hope to continue to do so.
Holeinone, I hope you can line up new treatment today to give you hope.
Melanie, I find it interesting you were on chemos and found Ibrance, which isn't chemo, hard to tolerate. Just goes to show how individual we all are.
Is anyone on Xeloda here? That's what I'm thinking of going on. Liver biopsy tomorrow.
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Cjanet, I still work, I have to as long as I can since I am the one that holds our insurance. I also chase 4 littles all over the place too!!
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Cjanet- I've been in Xeloda since December of 2012. Works well go me . Ask me urstions or check out the Xelida thrad
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Cjanet I'm still working and on second round of Xeloda. Funny, I had side effects after first round, diarrhoea, watery eyes and sore, cracked lips. Those side effects now completely gone! Just feel very tired (what's new!) and feet are feeling a bit tingly today, though I did a lot of walking yesterday. So, so far so good, and much easier to take but shame I only just got round to getting a port put in and now I don't need it!
kaayborg,what is the chemo you have lined up next? I know we went on gem/carbo about the same time and both have liver mets triple neg. have you considered Xeloda. You get to keep your hair!!
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Holeinone- big, soft hugs. Glad you see your onc soon. Praying for something to get those spots out!
Hi melanieW! 6th round with Bc? You are my hero! Sorry to hear about the tummy troubles. I hope they can find something that Semites the cancer and is easier on you.
Cjanet, I am working with the liver mets. There are days (today!) when I wish I didn't have to get up and go in, but the reality is that I'm a single parent and I provide my insurance. I think that work helps me take the focus off of the cancer sometimes. My week is more than just treatment, recover from treatment, etc. I am very blessed to have a job that is somewhat flexible and I work with tremendous people. That makes a huge difference
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Good Evening,
Interesting day. Oncologists was much more concerned about the bone met then the liver. I told her the way I read the report, it seems new tumors are emerging. She said the dying one causes necrosis, and also leave scarring. The report stated that the tx was working on other nodes, pre-tracheal & hilar & a few others.
The report did not say that about the liver. My liver #s have continued to go down, so that is a good sign. MO wants me to have a PET scan next week ( if insurance will pay ). She said it will tells us more about the spine met & liver. She gave me the choice to have chemo today, or wait until after the PET scan. I chose to recieve the Taxatere.... I would go bonkers if I did not. it is working on some levels.
Thank-you all for the well wishes & support. You are my rock. Oh, do you need a port to receive Navelbine.?
Kaayborg, I could do the Neulasta shots, gave them to DH after hip replacement. MO said they could attach one today that would self inject tomorrow afternoon. I live close to the hospital, easy to get there. So, I declined. Not feeling very confident right now, and I know those shots are very expensive. Would not want to rip it off in bed.
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Holeinone, I am so glad your onc is working on getting you a PET scan. That should give you a lot of information. I would have chosen to go ahead with the Taxotere, too.
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Holeinone, I think your news from the onc sounds a little less scary. Hopefully the PET will tell more good news. Also, I do the Neulasta on body injector and love it. You won't rip it off. It saves me a 20 minute drive the day after treatments. I call it my little lightning bug since it flashes a light. You don't see it except in a dark room.
Cjanet, working here too. I hold the insurance and am sole income earner (hubby stays home with kids but is trying to figure out jobs now...ugh).
Isy, Xeloda was lined up next for me but my onc now really wants me to do an immunotherapy trial. One in combo with Abraxane looks most promising. Abraxane will cause the hair loss which I have only recently realized with disappointment.
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cJanet, good luck with your liver biopsy. Mine was easy. Let us know.....
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Yes CJanet, my liver biopsy was fairly easy. Best of luck on that, I hope it is easy on you and the results are promising for you. I still work full time as well as I am also the sole provider of our health insurance. Also, like Mattie I think it helps me take my mind off of cancer for awhile. I also work with a pretty great group of people who are very supportive. When I can no longer work we will have to figure out a new plan. The fallout from all of this is endless........
Mattie, I like the quote about the 10% liver function too. It does bring some perspective. I also like your attitude onthe hair loss. I'm afraid I am a like kaayborg in that regard, where I realize I am rather self conscience about my appearance. Not only do I worry about putting other people off, I worry about looking horrible. Ah vanity....hard one to get over for me.
Holeinone, That is good that your Onc is not so concerned about the liver met. Hang in there and I hope they figure out a good next treatment for you!
Welcome to the thread Melanie. I sure hope they figure out a treatment to get you back to feeling OK. Constant nausea is a rough road and my heart goes out to you. 6th time around tells me you are one tough woman! Hang in there.
Jeez Mama! 4 little ones to chase around and working!!! I thought I was getting tired.....Kudos to you as well!
Leftfoot, 4 years on Xeloda is awesome to hear. May you continue forever....
As for me, my TM's jacked up this time around by 100 points each. Disappointed in that as they seem rather reliable so far. Don't have a scan until mid-June. At that time my Onc is going to add Ibrance back in at a lower dose regardless of results. The 125 dose seemed to elevate my liver enzymes so hopefully at 100 they won't.
kaayborg, That is pretty interesting to hear about immunotherapy trials. I'll be interested in how that goes.
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Just wanted to note that there is a wide range of experience with liver mets.
In my first year-plus with known liver mets, I was asymptomatic, then ascites kicked in early 2015, finally leading to an implanted drain in August 2015.
My liver began to swell a little before then and is increasingly painful. I hear the pain is due to tumors on the liver's outside and the liver capsule swelling.
My liver markers didn't go up when I was still getting blood tests (stopped at autumn equinox). And I'm still not jaundiced.
I've had three scans of any type during the past 2.5+ years of multiple liver mets and have never had a liver biopsy.
There seems to be some variation in how liver mets present, progress and are addressed (sorry, rhyme attack).
Also, I first was diagnosed with a lung tumor in 1999 and have never had it biopsied. Nor did I have it regularly imaged until 2008 when pleural effusion became problematic. More variation. May be regional or historical. I think monitoring and biopsy are far more aggressive now than in the past. There've been many changes in treatment options too. Different oncologists treat differently. And different patients demand different treatments. (I'm conservative and others are more aggressive.)
When I was on palliative care (2011-2015), I continued to get infrequent imaging tests (mostly chest x-rays - less radiation) and monthly blood tests. Now that I'm on hospice, I get neither. It works well for me. Used to need to know everything. Now I have some idea how much I don't and can't know and am in acceptance.
Change and variation, Stephanie
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OMG! Kaay! That is exactly how i feel in my ears..a heart pounding feeling...it comes for a few seconds and then subsides. I was dreading something sinister in my brain. THANK YOU SO MUCH for being here..love you.
hugs to all other warriors. Im praying for a NED for all.
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Holeinone,
I am sorry about the results of you scan. But i am happy you are seeing your onc soon. A patholigic fracture , is a fracture without obvious reason usually it is seen with people with osteoporosis and bone mets. I hope it is not the latter. I hope your onc will find soon a good tx for you.
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Sonyarrizo,
IBRANCE/Faslodex has been helpful over the last 10 months in reducing the size of my tumor and my tumor marker numbers have dropped. Before that Femara kept the tumors away. I am very sensitive to estrogen and removing it from my system has worked on my type of tumor. Of course I became aware of my tumor after taking Hormone Replacement Therapy for only 9 months, tumor just ballooned up. Our tumors are all so different and its hard to know what is the best for our own personal tumor. Good luck in your search for finding a good match.
Nina
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OK. I am revisiting the question of using RFA, liver resection, or laparoscopic liver tumor removal, to treat a single liver met . It's been 10 months since I started the IBRANCE/Faslodex combo and even though the markers have come down to 51 and the tumor has shrunk to 14mm x 12 mm I'm considering surgery/ablation, I think it's time. Tumor Board says I can do whatever I want including continue on just the medication.
I have talked to Boo, Denise, Longtermsurvivor, Leftfoodforward and Barb but was wondering if anyone else out there has anything to say about RFA (RadioFrequencyAblation) or laparoscopic removal of liver/tumor, or a liver resection for a BC liver met. I know the RFA could lead to a resection if the blood supply gets compromised. I know there are ongoing studies at the moment but none really aimed at which procedure might be the best if a procedure is chosen. My gut (or my fear of pain) tells me try least invasive first.
Thanks for all the information you share and post on this website. It's great knowing there's a pool of sisters out there ready to help with her experience.
Nina
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Nina- I'd say if you have options go with your gut. RFA is a very successful procedure. I know people have had great results with it. Worst case is that you have to do RFA again or have to do surgery. Best case is that the RFA is successful and you are done. There is never a right answer, just the one that feels right. If your gut is saying RFA then go with that.
Good luck
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Hi Nna, it was great to hear from you. I am so pleased that you are heading to a position where you can have the RFA. Very soon you will be NED and that will be a reason to celebrate! Love Boo x
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Nina, there is a proton therapy trial for liver tumors. I don't know if that would be an option for you to consider as well.
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I was just diagnosed with mets, I had an MRI of my liver spot and my Rad Onc is suggesting possible Cyberknife. I see him on Monday so will keep you all posted. I am starting chemo as well so not sure how the process will work but if I can do systemic treatment and zap it that's what I will do!
Kathy
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Thanks Boo, Sheltland and leftfoot. I now have a new toy to look into, proton therapy. When I quickly looked it up, it didn't mention liver but it sounds like a promising form of radiation therapy for difficult to reach tumors.
Kathy, are they suggesting you start the chemo and see if the tumor shrinks before giving it the cyberknife? I just looked up a comparison between cyberknife and RFA to see what the difference was. I never really knew about cyberknife but see it has some good uses "CyberKnife® detects minute body movements and fine-tunes the irradiation angle using a seeker." It's newer than RFA and all the comparison studies are about Liver cancer, not metastatic breast cancer. Don't know if the results apply to both cancers. They showed no difference in outcome between the two procedures but cyberknife, more expensive of course, had an edge with difficult to find tumors.
Nina
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my RO who treated my brain mets with cyber knife said I could do the same for my liver met but not until after I had one RFA. I'm fuzzy as to why but seem to remember it had to do with both insurance and accuracy. Something to do with placing the gold markets that cyber knife would have required. Glad to see it is becoming more mainstream and more of a option for people.
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Thanks for the link Stephanie. Always looking for new info like everyone else. Helps me remain optimistic.
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Thank you for this posting. Gives me hope!
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hello ladies. Well I am ready to claws my eyes out as they will not quit watering. Tried 3 diff scripts and nothing. They water down my face all day long and I hate it. On another note my onc had talked about a liver embolization. What's a cyber knife?
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Lvin, look at the last 6 posts or so. Those ladies are discussing it, and someone will come along with a explanation.
Hope all had a good weekend, with a day to enjoy friends & family. I went to a BBQ, nice weather, had a hot dog. I know they are the worst, but these were quality & excellent.
I had a PET/CAT scan. One machine, does it both. The liver has responded to chemo......😀
They found another bone met, fractured T6, found a compression fracture on T10 the week before. I have my last 2 chemos in June. Not sure what's going to happen with the spine mets. I have a bone scan, this Friday. So looking forward to Aug. But, enjoying as much everyday as possible. Don't want to wish time away.
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living- cyber knife is a very specific form of radiation treatment using gamma rays directed at the tumor using a computer. It requires s special machine that looks kinda like an MRU machine. I had this treatment on my brain mets and have been clear ever since.
I was told that it could have been used for my solitary liver met but only if regular radio frequency ablation wasn't an option. It would have involved inserting gold chips to be used as markers first, followed by the actual gamma knife/ cyber knife treatment.
Others who will be having this treatment might be able to be more specific. My only reference is my brain treatment and consult for my liver treatment.
Hope that helps
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holeinone- great news about response to treatment. Sorry to hear about the bone mets. Many are on a separate treatment for those and have been successful. I hope you come up with a plan to help with those and which helps keep you out of pain.
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Ok I goofed gamma knife is different than cyber knife. In general they at every precise ways to deliver targeted radiation treatment to a tumor.
Gamma knife is supposed to be more accurate but is used almost solely on brain tumors.
From what I understand cyber knife uses real time x rays and is therefore able to treat more than brain tumors. Gamma knife used a fixed frame that is attached to your head via screws for brain treatment.
Cyber knife is done using a robotic arm and can have multiple sessions.it is s single beam. The robot arm moves from place to place using real time x rays for guidance. Gamma knife is done in one session ( due to fixed head halo) and uses multiple beams at the same time. A CT image is used to program the computer to guide those beams.
That's my best try at explaining this advanced treatment stuff.
Sorry for the confudion
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Livin my eyes are also watering like crazy, and sometimes really sore like I've been peeling onions. Optrex eye spray helps a bit but only short term. Let me know if you come up with anything! Is yours caused by Xeloda?
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Lvin, I have normal watery eye problems on Xeloda but nothing extreme. When I was on Taxotere, however, my tear ducts closed up completely due to scar tissue from the chemo. The watering eyes would run down my face all day long. For a month straight, my eyes hurt and itched from so much from excessive watering. I had to carry tissue with me all day at work and dab my eyes throughout meetings and client one-on-one discussions. It looked like I was crying all day. I was prescribed steroid eye drops by my oncologist (I believe it was dexamethasone). When those didn't work, I had to go to an opthmalogist that deals with chemo patients. He had to manually reopen my tear ducts with an ice-pick type device. It sounds creepy but didn't hurt and only took 15 minutes or so while I was awake with some type of local anesthesia. Good luck finding a solution. I would suggest starting with steroid eye drops. I believe that is enough to solve the issue for most people.
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Had chemo today but I bet I won't next week. Platelets only in the 90s and they usually take a big hit between days 1 and 8. I meet with my doctor on Friday as she was not available today. Someone here and I'm thinking, and kind of hoping Isy (b/c of trip neg similarities), took maybe a 6 week break from gem/carbo. I am wondering how that went for you. Did it help achieve a lasting recovery or did it work for just a short spell?
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And I am very sorry to hear about so many of you having this watery eye side effect. I have not heard of that one and it does not sound nice at all. Livn an Isy, I hope you find a solution soon.
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my eyes water like crazy and I feel like the water gets stuck in my eye and won't drop down my face. Sometimes they burn like crazy... But only when I'm driving...
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Kaayborg, I had a wonderful six week break from gem/carbo but mainly because of Christmas/new year/holidays though my onc is all for giving breaks every now and again to give body a rest. I think it's a great idea as long as things relatively stable. I had to come off it eventually because of progression in bones, bit it did work well for my liver. Even a weeks delay to your chemo will mean your platelets recover without compromising the treatment. Hope you manage to stay on it long time I found it an easy chemo to take.
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lvinaz,
Cyberknife is a targeted radiation treatment, usually done 5 days in a row. I just had it done for my pituitary gland tumor. It is painless, you just lay on a table and the camera moves around you making clicking noises. It is state of the art and a precise radiation therapy. I live in AZ also! Who is you Rad Onc? I went to Dr Youseff at Barrow's Insitute at St Joe's. I also have a liver spot that I might do Cyberknife to.
God bless,
Kathy
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lsy, i am currently on javelin? That's possibly spelled wrong. I have tried 4 different scripts nothing works. May go to eye dr.
Kathy I am in the boonies in Maricopa. My doc is at ironwood in chandler. I like him he starts positive and is very nice great bedside manner. I guess Summer is here, 118 on Sat? Awww 😭
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Wanted to share. Xeloda is doing its job. CA 15-3 went down from 46 to 32-in the normal range at last!
CA went from 12.7 to 8.6 close to normal
Babs
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Babs, Excellent !
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Great news Babs! I will find out how Xeloda is going for me when I get scanned in a couple of weeks. Meanwhile bloods have all been good so fingers crossed I get good results too!
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Babs, great news! I am happy for you!
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Babs wonderful news 👍🏼👍🏼👍🏼👍🏼👍🏼
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yah, Babs, love hearing good news! Happy dance, indeed!!
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Thank you all
Bab
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Rejoicing with you, Babs! Go Xeloda! Go normal! Go YOU!
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Congratulations, Babs!
You've worked long and hard for this!
Hope you're out celebrating.
btw, thanks for your post on how you live well as a young, engaged woman with advanced cancer. It touched my heart.
warm wishes, Stephanie
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Thank you Stephanie! I wish I were young!!! I'll be 67 this year but I don't want BC to take over my life. Whatever time I have on this earth I wish to enjoy. My Mom was 42 when she died of BC and she always lived life to the fullest! I still miss her EVERY day but I have so many great memories. Thank god!!! And I want to leave those I love with great memories too- hopefully not for a long time!!!
Babs
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Hi Babs6287,
My bad, I was mixing you up with Becs who is also a wonder woman.
And I so agree, life is greedy for more life, even when the going is hard.
I too celebrate a milestone birthday soon and was recently looking at my bald and skinny photos from 20 years ago. Amazing what can and does happen for us. Life IS what happens when we're busy making other plans. May we en-joy what time we do have and en-rich others' lives too.
Babs, using your mother's short, but invaluable, life as a gauge, you've managed 25 more years - how awesome is that!
Congratulations again!
warmest wishes, Stephanie
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Thanks Stephanie!
Babs
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ahhhhhhh! the wait. Tomorrow will be having third round of navelbine, herceptin and perjeta and Dr will be scheduling scan to see how's working (I was diagnosed with liver Mets and ~3 involved lymph nodes)
Scans aren't even scheduled and I'm already anxious!!!!! Woke up at 2:30am last night...and today trying to stay awake at work with coffee. ..ayayay I may need to consider the advice of many ladies in this site and consider anxiety meds!!!
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gramen,
my MO scheduled my scan after the 3rd round of Taxotere, several weeks later. Closer to chemo #4. That way it had time to work.
Anti anxiety meds are nice to have on hand. They take the edge off, if our mind is going overtime, or to the dark side.
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Heloinone, good to know! now I won't be shocked when it's scheduled for month later!!!
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Mine are scheduled every three months, one coming up in a week. Super scanxiety! I think I need to follow the med advice as well just for periodic "freak outs".
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I also usually get scans every 3 months but this time we stretched it to 4 months since my TMs are falling and they've been reliable thus far.
Babs
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great news Babs! You and my mom were diagnosed around the same time and it's nice to see you (among everyone) with improvements.
Xeloda didn't work well for my mom unfortunately and liver mets are now extensive. She qualifies for a trial with Dana Farber and will be starting on Sapacitabine (oral chemo drug) days 1-7 twice daily than seliciclib (cdk inhibitor) for days 8,9,10 than week off. Beginning in a couple of weeks.
Fingers crossed she can join the improvement and ideally NED club soon.
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Daughter Lov-hoping& praying that the trial does the trick for your Mom and brings her to NED. Keep me posted on her progress.
Babs.
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Thank you Babs! Will do.
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I'm new to post but love to read and find others with similar dx. and their stories. I know I'm not alone in this journey. I've been fighting br cancer for 15 years. I'm blessed to be able to share as many others. In 2007 had mets to bones and 2013 liver. We've tried various chemo drugs including Ibrance, and now I'm starting Gemzar/carbo Monday. Taxol/xeloda was my last regimen & it worked, NED, but 3 months later & I now have 8 new small liver tumors and the vertebral lesions are active again. So I guess im looking for any info from actual patient testimonies. My hair was finally coming in... Don't know if losing it again for the 4th time. And just wondering about SE this time. Happy and blessed no matter what. I'm still here and moving ahead. God is gracious!
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advanced metastatic breast cancer
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Aghhhhh, welcome to Breastcancer.org. Sorry you're dealing with mets again, but glad you've found this group to share your feelings and experiences and learn from all these wonderful ladies here.
Good luck with new treatment. Please, let us know how you're doing!
Best,
The Mods
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Aghhh, first I really like your username. Second, I can speak positively toward gem/carbo. I have been on it a year and it is working very well for me. 10 cm liver tumors have been reduced to half or less in size and are currently staying stable (or so I hope - latest scan results due in today). No hair loss! Yay! I feel very well on gem/carbo as far as side effects go. I'm fatigued but functional on days 3-5, and am also a bit moody on those days, which drives me the most nuts. I've had trouble with white counts and have added Neulasta and later Neupogen to help with those. Currently platelets are really struggling and I've missed several treatments. We're looking to drop gemzar to help as it is perhaps the carbo that is most effective since I'm triple negative. It is encouraging to read how well you have been doing since dx is 2007. So glad to have you posting here. Let us know how everything goes with gem/carbo.
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Hi. I'm new on this forum and posting on my mom's behalf. Recently diagnosed with bone and liver Mets. Multiple lesions in liver with largest 11cm. Had 3 doses of Taxotere. But i feel it's not working. Liver has enlarged a lot and she doesn't eat much with nausea and wierd stomach sensations. Going for evaluation tmrw. Really worried.
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Viktorb, I felt similarly when I was diagnosed. I took 5 mg of oxycodone (10 mg made me dizzy, nauseous, and very sleepy) to help with pain and pressure from swollen abdomen until chemo quickly reduced inflammation and I felt good as new. I think it was after my first cycle of gem/carbo (2 treatments and 1 week of recovery) that I felt suddenly better and have felt great since. I hope you get good information at the evaluation. If taxotere doesn't work, there are many other things to try. I had taxol with my initial stage 1 dx and I don't think it worked at all given I had loads of cancer in my liver just 7 months later. Let us know how the eval goes. Thinking of you and your mom.
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Greetings! !!! I could use some encouragement :-( last week our kitchen/living room flooded (stupid washer) and we had to take the hardwood floors out so the slab dries and now my hubby is almost done putting them back/replacing the damaged sections. ...
so that means a lot of take out/ eating out for almost a week and you know how it goes, even though I try to make good choices it is really hard....
And I guess I'm in such a slacker mode that I just ate a banana nut bread and coffee while waiting for my weekly infusion :-(
Geezzzzzz
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Gramen, doesn't anybody know that when you have breast cancer your kitchen isn't allowed to flood? Grrr! As for the food, I hate getting stuck eating out so much also. I think it's okay to give yourself a break, though. You'll get back on track. You will! You will!
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Thanks kaayborg! Is funny how this illness changes our perspective 180 degrees. Other than the food little meltdown, because I don't want to feed this nasty c, im very proud of how the house mess doesn't bother me that much anymore!
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Aghhh, I also did really well on gem/carbo with no side effects to speak of. I was bald when started due to abraxane but hair soon came back thick and fast, and really curly! I had loads of energy, did a couple of holidays and wish I could have stayed on it for ever but although it was doing great things for my liver, after six months it was moving into bones so have since moved onto Xeloda. Feeling much more fatigued and sore feet mean I'm not as active so putting on weight. Grrrr! Hope you go well on it, let us know
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Viktorb, I first presented at docs with discomfort, swelling in liver area and very weird gut behaviour. A few doses of anti inflammatories (Brufen?) put that right before I even started on chemo, so you might like to give that a try. Like kaayburg I also found low dose OxyContin to be a godsend and still do. All the best to you and your mum
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Thanks Kaayborg and Isy. Encouraging words. Our preferred radiologist was on leave today. Now have to wait till tmrw to get the results and new regimen. I find it really hard to convince my mom to take painkillers. She absolutely hates taking painkillers unless very bad. If the chemo works how long before one sees decrease in liver size?
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Hi everyone. Babs, Artist you guys know me. I did not get to read the previous posts. I needed and wanted so much to be BCO but I got a substitute full time job and to be honest the stress got to me.
It's been a rough night. Yesterday we got the Pet/CT and Brain Mri for Dani back. So that everyone could follow, in brief, she is my daughter, a vivacious young mom. She has had Mets to the bones but yesterday the results came back, according to this Radiologist there is one spot in the liver 1.5cm, also the mesenteric thingy that has been growing on the left side of the abdomen, is getting bigger every time we do the scans. Some lesions on the skull got a few mms bigger. And the whole skeleton is still acting up, but not really getting bigger just not really smaller. So they call that part stable, so he thinks some of the stuff she is taking is working. Hmmm hard to think.
Ladies, I will be speaking to doc in the morning, If you see this, what's your opinion on "one small lesion", does it make a difference if it's small, or once it invaded the liver it's a different "monster". Doc told me last nt, oh, it's so small, maybe they will just radiate it. But should a biopsy be done? I really don't know how I am going to tell her, she deals with what she has to, but she was so hopeful. She does not want the details. In her everyday life she is a force to reckon, but this is just too hard (that's where I come in, she relies on me, looking out for her, doing research and getting her to a good place).
The lesions on the skull, were supposedly stable after some Gammaknife, but now it started growing again. Yes, not by much, but growing. He is considering Proton therapy for this. (to some of them)
She is now on Ibrance/Letrozole, Tykerb/Herceptin. ER+PR+(less than 1%), and HER2+ (FISH +++) Her status of HER2 changed from the original HER2- to HER2+ on biopsy a year ago. Could it have changed again??
Maybe he is thinking of adding Immunotherapy to it.
She has been on everything already, besides some very new ones. WHAT is going on?? She will be devastated, I really don't know how to tell her.
All info and opinion on this is so appreciated.
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BTW her AST/ALT are not high, at least not on the last BT, the next one is next wk, is that what liver enzymes is? I am trying to stay ahead of the doc, to be able to ask him the right questions. Thank you so much
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HI momallthetime,
I hear your concern and worry for Dani...your love too. Count me among her/your cheerleaders!
Want you to know there's considerable variation in how liver tumors are assessed and treated. I've never had a biopsy or local treatment other than my indwelling drain for associated ascites (diagnosed with liver mets in January 2014, ascites since January 2015 and indwelling drain since August 2015). Also, my liver function blood tests were normal until last autumn when I went onto hospice and stopped getting blood tests.
I know that local/topical treatment via radiation, surgery or other means, can be done for a single or few mets to the liver (aka oligometastatic disease), but it sounds like Dani's disease is all over, not just a single spot in her liver. This website may give you some ideas? http://www.beatlivertumors.org
Oh yes, liver involvement was a game changer for me (I've had pleural mets dx. February 2008 and lung mets dx. July 1999). The liver feels much more systemic as my ability to metabolize toxins and nutrients decreases.
As you will soon see, each of us has a unique experience and it's impossible to predict for another just how it will go.
I'd put the trust in Dani's doctor(s) and seek second opinions based on her unique experience, rather than trying to follow in our footsteps.
Momallthetime, sending warmest healing wishes, Stephanie
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Stephanie, thx so much. But you not in Hospice anymore right? Also, that's what I am trying to avoid. The idea that it got to the liver, being in the bones for 3 yrs, it's bothersome.
There is so much to ask and find out. Thx for the support. Stephanie,The right tests would be ast/alt? anything else?
Babs thank you for caring.
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Hi Momallthetime,
Oh, I am in hospice for 7 months now. Still waiting to die, but enjoying the slow ride out. I feel like I'm on the milk train, moving slow and stopping at every station along the way. I try to report back on my dying path via the Dying and Death topic, since I've a unique vantage point. I apologize, if I or my experience scares you!
Remember, I've had liver mets for at least 29 months now - so it's not an instant death sentence!!!
And many with liver mets have gone on far longer than that...I hope others weigh in about which blood tests to get. And which treatment options worked for them.
healing regards, Stephanie
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Oh I know, Mom had it. It's a slap to the face. I (we) knew the other shoe is gonna drop sometime, you just never want it to be so. Thx so much for the input.
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Anyone ever get ascites AFTER starting chemotherapy? My wife developed ascites at the end of her first cycle of xeloda. She has completed 3 cycles, getting good response in both tumour markers and as shown in the MRI. It seems like the response to treatment is triggering the congestion of her liver. It is only getting worse, as the cancer gets smaller. She might take up the onc's offer to take two weeks off xeloda and see what happens. There seems to be a slight trend between her cycles of xeloda and the rate of fluid accumulation. I fear that the xeloda, or some interaction between the cancer (dieing off) and xeloda is producing this venal occlusive disorder. They are puzzing over her latest MRI, and talking about narrowing of small veins, blood clots, scarring, pretty much everything and the kitchen sink, which makes me wonder if they really can pinpoint what is happening or if they are just guessing. But it seems 90% clear that treatment, not disease brought this on.
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Mom. AST/ALT is liver enzyme levels. It is good they are not high as that means something is inflaming her liver. So sorry for all of the complicated symptoms Dani is dealing with. She is lucky to have you on her corner. Try and do a few things to take are of yourself too though. Jeez, gramen sorry about the floors. That bites. But you are right how everything is put into perspective and we don't sweat the "small stuff" as much anymore. kaayborg, that is awesome to hear how well your tx is working for you, besides the platelets issue. Hope the change up turns it around. I too have been pretty lazy about meals and getting take out. I hope having the summer off will get me motivated to get going on cooking and exercise. It will, it will! LOL! Aghhh, your spirit and attitude make me smile and uplift me. Stephanie, you are quite a character, I love it.
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Hi everyone. Got the preliminary test results ystrdy. Ultrasound showed partial resolution of the main tumor(11 liver). But still liver dotted with multiple lesions of 1-2 cm. Minor ascites is there and liver is still enlarged. Liver enzymes (SGOT level has gone up from 90 to 130. SGPT is normal. Wbc count has shooted up to 25000. Doc said chemo is working although bloating and other symptoms persist. As it is a progressive disease, we can only try to control it. But deferred the 4th chemo cycle for few days as wbc count is very high. He will do a CT scan just to be sure if Taxotere is working. Nevertheless he is planning to proceed with 6 cycles to extract the maximum benefit from it before switching to a different drug. Anybody got a high wbc count after chemo? It's puzzling me.
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Victorb, I had my "5th" infusion of Taxotere last week. It really shut down the liver buggers. My WBC has been high, but I have gotten a Neulasta shot after each infusion. I have one more infusion, then onto the next tx.
While Tatxotere has done a fantastic job, my spine is popping up with Cancer in numerous vertebra. Also ribs.
Hoping we all get some quality time after all we go through. Do you have horrific fatigue?
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Hi Holeinone. Yup there is severe fatigue. Added up with bloating and weakness. That's what I am puzzled about. Even without any Neulasta, the count is very high. Now awaiting CT results. Hope the symptoms subside. my best wishes and regards with you. Hope ur bone Mets subside and we can all put these bad days behind..
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Victorb, that is odd, no Neulasta & high WBC. You are so right, weakness & unbelievable fatigue. I spent 3 days this week in bed, bone pain. It could be the Neulasta & Zometa. Since the bone mets are spreading like dandelions, I got an infusion of Zometa. Feeling like Humpty Dumpty. My thumb nails are very sore, looks like I hit them with a hammer. Was at a BBQ tonight. Close, good friends. "What are planning to do / go after chemo". They ask. Ah, well I need back surgery & then possible radiation on my spine. Scared as shit by then the liver buggers will come marching in. Been a tough week, sounding like Debbie Downer. Tomorrow is another day. Beautiful moon out, look for nature to cure the blues
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Sorry Holeinone, Hope your week gets on the upswing...
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Thanks Artist, appreciate the support. I think next week will be a better week.
Wonderful to be able to come here, be honest & open when life gets hard due to all we go through.
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Well, scans were not great. Have slight progression in liver tumors. So I have to change meds again. I am not a happy camper. I feel like I am blazing through meds too fast. She is taking me off of Faslodex already which I had high hopes for and putting me on Anastrozole with ibrance added back in. So now I am the Debbie Downer! Yes Holeinone, this is the first place I come to vent and get advice and hopefully offer support and next time good news.....
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Artist. Ugh, I was really hoping for a great report. Why not Aromasin since it is different from letrozole/Femara and anastrazole/Exemestane, which are both nonsteroidal aromatase inhibitors? And afinitor can be added to it. Do you think it is time for a second opinion from a major cancer center?
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Thanks for the info Shetland. Yes, in fact she has recommended that I do so in the next few weeks. I was just wondering why she did not try to isolate whether it was the Femara or Ibrance that was causing the liver enzyme problem. Besides that issue, the combo gave me good scans. So at least I believe I could of tried returning to this combo with Ibrance at a lower dose to see what happened. Instead she immediately switched me to Faslodex alone which has now failed on it's own. If my scans had been stable we would of added ibrance at 100 mg with the Faslodex. But not to be. Trying to keep up on all of this is beyond exhausting. I am starting to doubt whether I should return to work in the fall and am filling out SSDI just in case. Time to get aggressive with my care.
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Right, you didn't switch off letrozole because of progression. Time to gather all your records and imaging. I like to hand-carry my own copies just in case the second opinion doc didn't receive them as requested. But first get that appointment made. So many changes being contemplated in your life--treatment, job, house. Take care of yourself.
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(((Artist)))
Surrounding you with loving, healing light!
Shine on my friend, Stephanie
PS - Aromasin is a steroidal aromatase inhibitor. Doesn't have an effect like steroids, just works in a different manner than the others. Afinitor, an mTOR inhibitor works in concert with it. The combo is a fairly intense approach that isn't used as early in treatment as Ibrance is now...still less toxic than the oral chemo Xeloda (the usual next, next step) or infused chemo. I bumped the topic/thread for you. In spite of date on it, it's not outdated. https://community.breastcancer.org/forum/8/topics/...
PS2 - Hope Rugo at UCSF has pulled it out for several of my friends with MBC.
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:-( Artistaheart, Heloinone, I'm sorry for the latest results. Please keep our chins up & moving forward. I feel like one of the little siblings looking up to the older ones (in terms of diagnosis time not age!) and learning from you all!
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Thanks you so much my virtual friends. I value all of your input so much and feel I trust your experience more than my own Onc. I would not make it without you all...... Yes Shetland I am indeed feeling overwhelmed but keep plugging away at stuff. I am one determined chickie! Thanks for the link Stephanie, I am going to jump there now. I have been perusing the anastrozole thread and don't see any Stage IV people using this so far???? Anyone out there?
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How do you go about arranging a second opinion? We called M.D. Anderson and they wanted $21,000 just to get started.
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ouch, That's insane. I always wondered, will your insurance pay for 2nd opinions when they are out of our network? I live in a rural state, no big Cancer centers here
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My Onc arranged the first one at their affiliated center 90 minutes away and insurance paid. I hope they do again....
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Artist, so sorry to hear this. I'm of no practical help to you as a trip neg gal with zippo knowledge about hormonal/targeted therapies but I am thinking of you and wishing you the best treatment plan as you seek your second opinion.
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Artist- so sorry. I know how you feel. I went through a few treatments and then Xeloda worked for me-finally! My treatment before Xeloda lasted only 2 months!!!! I'm sure you'll find a treatment that works. Do you go to an MO at a major cancer center? If not, maybe it's time for a second opinion. I switched MO's when I had my progression and my original MO didn't really offer me many options. Take today to be upset and then re-group and find out what other options you have!
Babs
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Hi babs6287. I went through meds like knife through butter last year. Then my onc put me o weekly taxol and the respose has been really good. Lungs show ned, liver tumers shrunk 50pc and bones stable. However, the lsdt two marker results have shown an in rease but scans are good. I have developed a painless, pea sized lump on my abdomen near belly button. I can,t remember whether it was on this thread that someone had what she thought was a spot and it turned out to be a skin met. I,m thinking if it is a skin met could it be the reason for increase in TMs.? I find it difficult to go over the thread again as I have mets in eyes. Has anyone got any onfo on skin mets from BC.
It seems we get a treatment that works and suddenly the rug is pulled from under us and we start again.
I wish all starting new tx the best of luck. Good results for the others andpain free days for everyone.
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Ugh Artist, so sorry to hear your news, it is so frustrating when this stuff happens. I just had my scans and meet with the onc to go over them. We were dx right around the same time, I was 07/08/15 so we have been following the same-ish path. Here's to hoping Ibrance is better to you the 2nd time around!! Hugs to all you ladies!!
Alissa
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Thanks so much kaayborg. I'm felling better today after jumping on here and getting all sorts of valuable feedback and encouragement. Yes babs, I am regrouping and got an appt. for a second opinion already on Thursday at UC Davis. That is how I felt at my appointment after the scan, that she didn't offer very many options and just seemed "resigned" or something??? I think having two Onc's going will help me bounce back and forth as needed. I liked the 2nd opinion Onc the first time I met her. True mutherflush, it seems as if the rug gets pulled out just as I get going on a roll. Alissa, Wow is that 4 kids? How do you do it and manage this cruddy disease too? I have 3 but they are grown and out. We are parallel in our timing! Are you just on Ibrance or something else too? How's it going for you? Be well all!
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Artista-so happy you got that appointment for a second opinion so quickly Let us know how it goes and what they say
Babs
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Kthleen I was reading what you wrote in the beginning of June, could I ask you how did you decide about doing the cyberknife to the liver? I didn't go far back to read posts, so is this something new with this one spot? How large is it? Did you do a biopsy?
Holeinone you are not a downer, you are living the real life. So sorry for this mess.
Artist I am cheering for you to get the info you need at the new appointment.
Timothy maybe there is a department at the Univ. that could help you get around paying this nonsense amount for a 2nd opinion. It's just not right.
We sent out all documentation to different doctors for a 2nd opinion and now waiting back. Onco called today, still unsure about doing biopsy or not, his plan would be to put Dani on Lynparza(an ovarian cancer drug) with immunotherapy and keep Ibrance and Letrozole and Herceptin. The Letrozole he wanted to change, but when I asked why he did not really know and it seems he will keep it for now. He does not look overly concerned about TWO spots in the liver, but I am, she did not have this 8 wks ago, and after a few years with bone mets she had mets to a major organ. I don't get his "not so worry" tune.
Also, Dani had a blood biopsy done with Guardant360 back in January and NOW he says he looked it over and sees that "the tumor" has a BRCA2 mutation. Hmmm what does that mean? I know she is BRACA1/2 negative, he said it has nothing to do with that, it's the tumor that has the mutation not her. Ever heard of such a thing?? Gonna ask around, it sounds really odd.
And b/c of that he feels the Lynparza would work.
Waiting for 2nd and 3rd opinions docs to get back to us regarding appointment, let's just say she is not doing any of these stuff before we hear from other facilities.
If anybody has input on Dani's status I'd love to hear it.
Stephanie, so incredible how you think of everyone.
Mutherflush hope you get your answer soon. Definitely worth looking into it, maybe even doing a biopsy.
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Momallthetime, I can speak to the tumor mutation vs. a mutation Dani has. This confused me too and I asked my onc about it when I got the results of my liver biopsy. A mutation that Dani has would be a genetic one, part of her DNA that could exist with or without having cancer but is predictive of her cancer risk and does guide treatment of cancer. Tumors can also have their own mutations not linked to genetics. I'm not brca positive, tumor or otherwise but I asked the question because my tumor study turned up a mutation whose name I happened to remember being negative for on my genetics test. So long story short, it is a thing and both help inform treatment options. Another important thing to remember is that tumor mutations can change so it's good to have them retested especially when a previously effective treatment has stopped working. Also, know that having the brca tumor mutation does not put your family at risk for having a mutation as a genetic mutation would.
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So I had a allergic reaction to carboplatin. I've filed away somewhere in the fog that this occurred to someone else on the boards in the last year. She brought a study to show her onc about extending the infusion time to prevent. My pharmacist and doctor are up on this and thus is the plan along with altered premeds. What I'm wondering is how long and well this worked for you? Did you have another reaction? It seems like every bump is indication that I'm just about done with this treatment and of course, I'd rather not be.
On the upside, my platelets did recover and I had treatment. We dropped gemzar this time to hopefully make them happier. Plus, carbo is what they predict is clobbering the tumors best so hopefully no loss. Then surprise, now you get to be allergic to carbo!
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Momallthetime,
I've a passion for researching, talking and writing about this is something very topic. I'm not a medical professional, but am a professional patient. I was born with a genetic mutation (first in family) that produces gastrointestinal polyps from a young age and 93% increased risk of cancer in multiple organs at all ages (Peutz-Jeghers syndrome).
It's not a BRCA mutation, but presents it's own challenges.
What the BRCA folks and I share is an autosomal dominant germline mutation that predisposes us to cancer.
Autosomal mutations are in contrast to gender-linked syndromes.
Dominant mutations have a 50-50 chance of being passed on to each child. This is in contrast to to recessive mutations that don't manifest in offspring, unless both parents have the same mutation.
And germline mutations mean every single cell in the body is affected because the mutation occurred at or shortly after egg-sperm fertilization. This contrasts with somatic mutations - a mutation that occurs in the body some time after the person develops Somatic mutations are frequently caused by environmental factors, such as exposure to ultraviolet radiation or to certain chemicals. Cancer can also cause somatic mutations.
What Dani has is a somatic mutation of a BRCA gene in some part(s) of her tumor. This doesn't mean that she has a germline BRCA germline mutation from her father or you and it can't be passed on to her children because it's not in her germline (eggs).
What it does mean is the cancer developed more and more mutations as it evolved. That's what cancer does - tries to outlive its host while stripping us of nutrients, etc. These are our cells gone bad or rogue. They are naturally occurring mistakes in cell growth, survival (autophagy), growth and migration (angiogenesis), metastasis and more.
If you want to get geeky, here's an abstract of a medical journal article on the Hallmarks of Cancer:
"The hallmarks of cancer comprise six biological capabilities acquired during the multistep development of human tumors. The hallmarks constitute an organizing principle for rationalizing the complexities of neoplastic disease. They include sustaining proliferative signaling, evading growth suppressors, resisting cell death, enabling replicative immortality, inducing angiogenesis, and activating invasion and metastasis. Underlying these hallmarks are genome instability, which generates the genetic diversity that expedites their acquisition, and inflammation, which fosters multiple hallmark functions. Conceptual progress in the last decade has added two emerging hallmarks of potential generality to this list—reprogramming of energy metabolism and evading immune destruction. In addition to cancer cells, tumors exhibit another dimension of complexity: they contain a repertoire of recruited, ostensibly normal cells that contribute to the acquisition of hallmark traits by creating the "tumor microenvironment." Recognition of the widespread applicability of these concepts will increasingly affect the development of new means to treat human cancer. ~ http://www.cell.com/cell/abstract/S0092-8674(11)00127-9?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867411001279%3Fshowall%3Dtrue
Targeted therapies like Lynparza (a PARP-inhibotro) address just one particular somatic mutation or its effects of one portion of a person's cancer. It works by going after a single target, like the mutation that Dani's cancer has developed.
Here's a bco article on the topic:
http://www.breastcancer.org/research-news/experime...
And here's an article on PARP inhibitors in BRCA+ cancer:
Momallthetime - this is a lot of information to digest, but I know you're a researcher as well as strong advocate for Dani. I can feel your loving concern radiating through your every post.
I hope that this is good medicine for her, helping her outlive her prognosis with a good quality of life.
Sending the warmest of healing light, Stephanie
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I posted a "rant" on facebook, telling of the bumbling and stumbling system that lead up to my wife's first, late, diagnosis, and the present treatment dilemma she faces of what appears to be sinusoidal obstructive syndrome in her liver, that only showed up after starting chemo, worsened with each of the 3 cycles, and now the Onc simply wishes to proceed with a fourth cycle. I am worried the treatment will kill her before the disease. They seem to have conveniently forgotten the order in which this occurred, an outwardly appearing healthy woman starts chemo and despite the cancer getting "better", confirmed by both MRI and tumor markers, her liver is becoming more and more damaged. The nurse blamed it on my wife taking an extra week off, despite it having been given the Onc's blessing (as relayed through HER), and not even occurred yet. Frightening ignorance. And she is our interface with the Oncologist.
An old friend who is a Doctor saw the post, and has intervened. He has pulled some strings to get my wife's case brought up tomorrow during the case files discussion, with hope that input from other oncologists will lead to more careful consideration of the problem. We prayed, and I believe our prayers are being answered. As well, tomorrow my wife goes for having a permanent tap installed to allow more frequent draining of her ascites.
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(((Timothy)))
May your prayers and ours be answered!
It sounds like a second opinion is well advised now before proceeding to the next chemotherapy session.
I've had a permanent ascites tap (drain) for ten months and have written of it many times over the past several months.
Ask questions here or on separate bco topic/thread and I'll do my best to answer soon. Am a bit compromised myself right now, so response may be delayed.
Healing blessings for your wife and you both, Stephanie
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Thank you Stephanie, and I am praying for us all.
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Artist ,
I am so sorry , i was hoping you get a good run on faslodex also. But i happen to agree with Shetland, it is time to check and get another opinion. Why would they put you back on ibrance/ femara ? If it was right for you why were you taken off it? Please get another opinion . Keep us posted. My prayers are with you , hugs.
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kaayborg,
I do not believe you developed an allergy against carbo , it is just that carbo cannot be taken for a very long time like other chemos . When i did mine my onc told me the max we can do is 8 sessions. I barely got through the six . It was a very harsh chemo on my blood. I hope you get to stay on it if it is not dangerous for you.
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kaayborg, How disappointing if you have to stop carbo.....i hope they figure out a good next step for you. Try not to stress too much, it does no good for any of us. Easier said than done....
Good to hear from you Woody! I have another opinion at UCD tomorrow. Just nice to know I have a second person at a major center I can sometimes see. My Onc put me on Arimidex/Ibrance now but said that we could return to Femara up the road with NO Ibrance as she thinks the COMBO caused the issues. She originally stopped them both at once when my liver enzymes shot up which have since returned to normal. We still aren't sure which one caused the enzyme issues but will get a blood draw in two weeks to see where I am at with lowered dose of Ibrance. How are you doing Woody? I know you took a break from here for awhile. I hope you did some good stuff with your extra time!
Timothy, I am so sorry you and your wife are going through so much. I hope they get it freakin figured out! How completely stressful and scary.
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It IS good to hear from you, Woody! I do hope you are well. As for me, it is surely an allergy (hives, itchy, flushed like a beet), which is fairly common with carbo after the 6th or 7th infusion. They treat with Benedryl which worked when things got out of control so hopefully will do the same as a preventative. Hate to quit carbo, harsh or not, I feel well on it and it's doing its job.
Timothy and Artist keep us posted. I am thinking of you both and praying you find good info and effective plans.
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Kayyborg, so sorry you are having an issue with Carbo. I am not surprised. My daughter had a minimal time with it only. It was extremely difficult.And your explanation about the brca is just fantastic. Why could he not explain it like this. Just to confirm it says it's only .2%but it does not show any amp, for the ones that showed amp there were some suggestion of the therapies that she then tried and they did not work. So go figure!.
Stephanie, can't believe you put so much effort into this. Thank you so much, love the links, and you make it so easy to understand. I read the stuff, but believe me I gotta reread it. You write so eloquently. It's exactly what you said about being a professional patient. We gotta be informed, and try to ask the right questions. As I told Kayyborg I read it once, but I gotta study it now. And is BRCA really driving her tumor - especially if brca was not mentioned at all in Foundation 1 biopsy of the hip bone, in Jan. 15, but only now by guardant 360 (blood biopsy).
What you guys wrote seems like poetry. And someone else in a dif. thread sent me another link with the same idea, incredible. I call you guys, my peeps, my true friends. So helpful. I am wondering should he have not seen it back in Jan., when the blood biopsy was done. Would that not be able to be used asap. Why wait to get to this point, and only bcs I pushed him to spk with a colleague and review the plan. There are a few others that have the same low %, so maybe he should look into those also.
I am still working on the 2nd/3d opinions. And I still would like to know if the majority of ladies here, did you have a biopsy of the liver tumor done when liver mets were discovered? And any rads?
Timothy rant away. And you have all the right to do so. What was the delay in diagnosing your wife's cancer, if I might ask. This is what we have to do. For me my daughter going through it it's just as if I were going through it, but worse, bcs, she is so young so much to live for, her family, life and I wanna try to stretch this as long as we can. It's really absurd. I am sure it's just a bad dream and someone will wake me up soon. Hope you get good advise asap.
Thank you so much for all your help. Love ya.
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Bev got her drain installed today. They only were able to drain off a litre. Assuming the drain is any good, that's a record low amount for 6 days accumulation. We made a chart of her drainage history, divided by days between drainage, and it definately goes up and down. It's highest accumulation per day, 0.8 litres/day just after her xeloda cycle has ended. It goes down to as low as 0.27 per day at the early days of the beginning of her next cycle. That seems to correlate with time off xeloda. She is just finishing up 2 weeks off xeloda, and her accumuation is down to 0.17 per day, but she also just started on diuretics, so that has to be factored in. In any event, time off does bring relief. Let's hope it is fully reversable at some point in the near future.
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Timothy, just want to say that I admire how involved and dedicated you are to fighting this horrible disease with your wife.
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momallthetime, Yes I had a biopsy immediately when liver mets were discovered. They do that to check if the ER/PR and HER status are the same as the primary tumor which dictates what treatment to try first. I did not have rads as I have several tumors so I don't think it's advisable. Kaayborg, I had my 2nd opinion and she pretty much concurred with my Onc that switching was probably what she would have done too. I like this lady a lot. She has a very calm, intellectual, yet caring manner. Somehow she explains things in a way that instills a bit more feeling of optimism in me. I got there and actually got in EARLIER than my appt! AND she had completely read a huge stack of my records that the first Onc sent!!! I was impressed.....She mentioned a few other lines of treatment before I would have to move to IV chemo which was a relief and also a new combo we might try next. I just like having that 2nd pair of eyes on my case too! So for now it is Arimidex and Ibrance. Are you definitely off of the carbo and if so what is next for you? Hope it's something easy too.....
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Timothy, you are Rock Star ! hang in there, we all know this is a marathon.
Momallthetime, like Artist, I had a liver biopsy immediately after the CAT scan showed mets. Then started chemo 3 days later. The CAT scan said innumerable tumors. The 5 infusions of Taxotere has kicked those stinkin liver buggers to the curb. Bone & spine mets are popping up like pesky dandelions. I have not had a 2nd opinion. I live in a rural state, but there is a Cancer center 4 hours away in another state. I just have not had the energy, desire to figure out if insurance would pay for that. The Taxotere has made me weak & sickly. Maybe I will at some point. I think for the MOs, They try what's worked in the past, but it still is a hit or miss situation. Cancer is unpredictable
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Holeinone, it is definitely a hit or miss situation. if your current treatment kicked those buggers to the curb maybe time to switch to some dandelion killer? Maybe something without the SE's that will allow you to perk up and feel better? I had a second opinion yesterday, have to drive only 90 minutes which is not bad. I also have no idea if insurance is going to cover and hope I don't get a shocking bill. But I just want to get familiar with another doctor in a major center for the down the road. She has a very clear and patient way of explaining things which makes me feel calmer so well worth it to me.
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Artist, very impressive that your 2nd MO was so prepared. The plan for me is to start Flasodex in mid July. My DD asked me if I had considered skipping Taxotere #6. Oy, I thought about it......tough decisions, no clear answer. I feel like damn if do, damn if you don't. Also see a spinal surgeon to have kryroplasty ( sp ) done on T 10. Watching summer go by, holding down my recliner. I usually play in 2 golf leagues & numerous tournaments. Also lots of tennis. I realize those days are behind me, and that's ok. Whenever I get "down", I remind myself how many much younger women are going through this. Breaks my heart to see how many are raising kiddos. I turned 61 last month. I always felt younger than my age, now, not so much
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Artist, so glad to hear about your fabulous 2nd onc. The way you describe her reminds me very much of my own. Lovely! I seriously hope you don't get a bill. I am definitely keeping the carbo so long as it lets me. A little worried that lengthening infusion time and adding Benedryl may not work (or not for long) but mostly feeling good about it. No nurse or pharmacist seemed at all concerned about it. Just worked like a finely oiled machine to get the reaction under control and said next time we'll do it this way and it won't be a problem. I'm trusting them. Would love to hear from someone allergic who's been on this path but it doesn't seem many do carbo for long. I guess I should just count myself lucky. It's been almost a year.
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Hi, Well I finally decided on ablating my one liver tumor 8 days ago without following up on cyberknife, or the proton beam, because this is what my medical center recommended and had available. I woke up from surgery to find the surgeon, who was there to help the IR doc with his camera so he could hold back the gall bladder, telling me he decided to do a laparoscopic resection to make sure he got everything instead of just an ablation. My recovery is doing very well I'm told, only 5 small holes with some abdominal pain still, no pain meds anymore though. I did go to the ER last night because I had a fever for a second night in row so they wanted to check for infection. Everything is just fine, no need to worry.
I plan on continuing on Faslodex and the scans and markers will let me know if and when I have to start Ibrance which was quite effective. I"m very curious as to what happens to the tumor markers if there is no tumor left. Nina
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I have liver mets and the chemo; now Faslodex seem to keep the buggers stabilized. Since shrinkage after initial chemo, no growth or changes to the now reduced tumors. I have hope.
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Bev got her drain installed on Thursday. I did the first home drainage today. We drained less than 500ml. I used a less than exact means of determining this, I weighed the bag when we were finished and it weighed 500 grams. So its probably closer to 400 ml drained. That's fairly low for two days (approx 0.2L/day). I will keep track of the volume to see if it rises again as she gets into another xeloda cycle.
She is starting xeloda again today. Doc says she can do two weeks on and then two weeks off. That's rather unorthodox, but as long as it works thats all that matters.
Unfortunately at the Oncology rounds on Thursday where he brought up Bev's case, the ascites that came on only after starting chemo, no one had any new suggestions. We were rather disappointed. Seeking a second opinion seems to be rather challenging.
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Oh that is disappointing Timothy. We all always hope to walk away from that appt. feeling lighter, more optimistic and sounds like you didn't. It just keeps the stress building until the next time.
Fantastic activern! We all need reasons for hope! I would like to get a good year out of a med but really we all hope to keep going on "the one" indefinitely. kaayorg, I am glad you can keep going and hope you don't have anymore bad reaction. May carbo last and last for you!
Yes Holeinone, Like you I always felt younger than my years and was very active. One of the hardest parts is the limitations we suddenly start facing. Like aging in warp speed. Was not even close to ready for that.
Nina, that's pretty amazing science I must say. I hope I have an opportunity like that someday.
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Hey guys, wanted to check in and let you know how the clinical trial is doing. After I completed two cycles of chemo/study drug or placebo we did a CT scan and tried to biopsy for tissue to send to the drug company. Things are going great! The cancer that was in the lymph nodes in the shoulder resolved! The largest used to be 1.4 and it went down to 7 mm! The lymph nodes with cancer near the tip of the pancreas also reduced in size and mass! And best of all, the cancer in the liver was halved! From about 6 cm to a little over 3 cm!
Needless to say, both my doc and I are very excited. We don't know for sure if I'm getting the study drug or placebo, but with those results, we think it is the study drug.
The trial is for triple negative stage IV and is taking place at Vanderbilt in Nashville. I think they stil have some open slots.
Since there aren't to many things out there for triple negative, I'm hopeful this immunotherapy will be successful and be available on the open market soon
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Mattie fang- so happy for you-those are great results!!!!! Happy Dance Time!!!!!
Babs
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mattie - contratulations on the spectacular response to whatever you are doing. what is the immunotherapy drug that you are (possibly) on. do you have a link to the trial?
>Z<
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Waiting for PET scan. Ugh!
Babs
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hi all. Been on vacation with my horses. Just got latest markers, down 75% to 49.5!!! I'm thrilled!! Had to share.
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LvnAZ, what wonderful news!
So happy for you!
Glad you could celebrate with horse time.
warmly, Stephanie
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mattief so happy for your wonderful news. i know someone at the bones thread that has now triple - could i post ur post there, for her to follow up?
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So Dani's Pet/CT showed these 2 liver spots, should I insist to Onco it should be biopsied or wait for tx to take effect? We are really anxious about it.TiA
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Lvnaz. Great news. Celebrate🎉🎉
Bab
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Lvn, great news! Your horse is gorgeous! Momallthetime, I wonder if they use size to determine if the tumors should be biopsied yet? Babs, I hope you got through the scan OK and treated yourself to a "perk me up". Let us know how it goes. We'll be thinking of you while you do the torture wait.
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Artistathea-went right to Barney's for lunch and a shopping spree!!!!! Now I need to return some of it since I HATE trying on in stores. Going to Fla tomorrow to visit my folks. Should be nice and hot and, my Dad hates AC!!!! At almost 95 years old, he gets cold all the time! Waiting there will be a challenge since they don't know that I "graduated" to stage 4 and that I have mets. Will have to whisper on the phone-which is ok since they're both hard of hearing at this point!
Babs
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Oh hahaha Babs, you are just like me. I hate trying on clothes in the store. I used to return so much stuff I thought they were going to think I was a chronic shoplifter! Sweltering and yelling everything all week huh? Sounds like a challenging time but what a blessing to still have your folks around! I took the ddep plunge and bought a new car yesterday! Then got home and felt some buyers remorse but just a little....I needed something more reliable and updated. My old car was 14. Can't believe all the cool features the new ones have. I just want to drive so I can listen to the new sound system! Hope it not too humid for you down there!
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Artistathea. Happy for your getting a new car! We deserve to treat ourselves (which I have a hard time doing now). This summer is our 45 th anniversary and my DH asked me what I wanted. Silly me said nothing. With all we go thru material things just don't mean the same. He was so disappointed. My friend told me that I need to let him buy me a gift so off to the jeweler when I get back.
So enjoy your new car and all if it's wonderful new features!!!!!!!
Babs
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Scans are in and I'm NED. Sooooo happy. Had to share with you all.
Bab
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Congrats Babs, so happy to hear that!!!
Alissa
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Babs, That is fantastic! Super happy Dance for you! Also, married for 45 years!!!!! Super congrats to that as well! Now you MUST let DH buy you a gift. Just think really hard about something you have always wanted but never splurged on. Think outside of the box. What is something that could add some real pleasure to your life? I am the same way. Used to love buying clothes and shoes, and books. Now I could care less. I have just lost my enthusiasm for spending money on "frivolous" things. Plus we have never been "well to do" to begin with. We work really hard for our money and this diagnosis of course has drained us even more. I've been cleaning out a lot of stuff I've accumulated over the years, downsizing. But the car? I decided since I have no idea how long I will be here, and it COULD be years, why drive around in an old car that I worry about potential mechanical problems? Now when I take even a short road trip I have all the safety and creature comforts that make it 10 times more pleasurable!
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excellent news Babs! I would sooooo love to hear those magic three letters it must feel wonderful. I'm also doing well on Xeloda. Last scans showed shrinkage in liver and bone spots now gone or barely seen! I feel good on it too, just sore feet but hey, years of wearing silly shoes I'm used to that. Hope you celebrate well
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Alissa-thank you
Artist. My happiest times are being with those I love-that's all I really want!!! The other things are fun but after all we've been through it just doesn't matter any more.
Isy my first scans at 2 months showed 40% decrease and now at almost 7 months NED. Never expected such great news but loving those 3 letters
Hoping everyone here gets to hear those 3 letters too
Babs
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Babs, I think the gift thing is more about making the DH feel good. My husband gets very anxious when I say "nothing". He just wants to show me his love so much and to him just the devotion and affection does not seem like enough to him. Not sure why as I have never been that materialistic. I would rather buy a tool than jewelry. When I got that car the other day, he could not stop smiling and kept calling to see if I was "taking a drive?" Of course I was pretty excited too which made him feel VERY happy!
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Babs, big big congrats and a very perky happy dance ! Celebrate it with joy 🍾🍾💃🏻💃🏻
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Livinz , you look great ! And wonderful news keep going. Your horse is gorgeous and i believe he is your best therapy 🌸🌸👍🏼
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Artiist. You're so right about that. When my TMs hit normal DH bought me a small piece of Lalique. He was so excited about it. I did love it but the last thing I needed in a small NYC apt was another decorative thing to put out!!!! But it gave him so much joy to give it to me!!!!!
Babs
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Hi all,
Looks like I'm joining liver mets thread now. I had one small spot on my last cat scan two months ago. I recently had another cat scan (few days ago) due to cancer antigen numbers elevating each month for the past three months, the last month showed really high. Anyways, my liver is normal in size and the blood work info on my liver looks good, but, I have multiple lesions that have increased in size and number and smaller nodules that have developed from prior cat scan. My oncol put me on Megace two weeks ago but had 'the talk' with me Friday about chemo down the line but he didn't know when. He did say there were many options, that some chemos are by pill, others IV, and with some, one wouldn't loose their hair.
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Yeah, Babs, NED is a most wonderful thing to hear, and 7 months to boot, congratulations!
Artist, woo Hoo, you did it! So happy for your new car. Put a lot of miles on that baby!! So glad you can now take road trips and feel safe!
Nature girl, we are so fortunate to have so many options! Sounds like your onc is on top of things. I won't be having a scan for a couple of months but I'm on megace and Ixempra so will be anxious to see what's going on with my mets as well. Hope there's shrinkage everywhere!! I feel better than I thought I would on the Ixempra and love that I only get infusion once a month. I feel free!!
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Naturegirl. I'm sorry you're here but the women here are terrific and such a great source of support and info. I had progression to my liver and the first tx was a clinical trial that didn't work at all. My Mo put me on Xeloda 1/1 and as of yesterday I'm NED. Pretty amazing. Xeloda is a chemo pill. You don't lose your hair with it. Is that what they're considering for you?
Babs
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Babs, LvinAZ, Mattie Fang......Great News, Congrats !
Artist, New car, you are living for the future, I love it.
Nature Girl, welcome to this thread, it's been a great source of knowledge & caring support for the last 4 months.
Timothy, wish I had advice. Good luck with the drain, I hope better days ahead.
Wavy hello to all, I missed a bunch, can't look at the page before.
I am getting Taxatere # 6 right now. I thought I would be too sick or weak, but here I am. Steroids perked me right up. I am starting to warm up to my MO, after almost 3 years. I know it was me, being so overwhelmed. She has been open & and informative. Tomorrow Neulasta, next week Zometa, Ah my life is full...lol.
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Naturegirl, I'm so sorry about that news. It must have been like a punch in the gut. I was dx almost a year ago and am doing extremely well on AI's. Know it won't last forever but hope to get lots of mileage before the big guns come out....Cancer bites!
babs, I had a HUGE yard sale on Saturday and unloaded so many decorative "clutter" items. It felt so good I feel like I could do another! I am filtering it down to my very favorite things so I can enjoy them more instead of them being lost in all the stuff. Did my closet too although I still occasionally can't fight the urge to buy a new dress or great pair of jeans.....
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Drained Bev last night. After 4 days she had accumulated less than 300ml of ascites fluid. That's a record low of .075L/day. In fact less than half of her lowest low (0.17L/day), and less than 1/10th of her largest accumulation rates (0.8L/day). Keeping track with notes on all of this so that we can see if it goes up and down with the xeloda or other factors. She goes back to the Onc on Monday for blood tests to see if she is ready to resume treatment on account of her low neutrophil count. I am happy to report that she is feeling really good, aside from the hand foot syndrome. It's wonderful to see her enjoying life and friendships / family once again. For a couple of weeks all she could do was lie on the couch all day. We have a wedding this summer, our youngest daughter is getting married August 1st.
This board is terrific. So full of hope and good advice / sharing.
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Thanks GatorGal! I'm glad you are feeling better. I haven't heard of Ixempra before and, in combination with Megace but hope it does the trick for you for a long, long, time. As you know, that is what I am now on as of three weeks ago(Megace only), prior to this last cat scan due to my oncol. going on vacation, He did the cart before the horse thing, as he wanted me on something since he dismissed Ibrance/Letrozole three weeks ago and scheduled the cat scans after I began taking Megace. It is some kind of shock to say the least with this liver diagnosis. Last cat scan was two months ago, the day before my mom passed on, and the news was not good, but, nothing near this bad news on the latest cat scan. I am scared to death with many lesions and small new nodules in my liver. I also have additional lesions on left 2nd and 4th ribs, vertebral bodies T5, T12,L2,L3, and the right iliac bone. I'm so disgusted.
Hi babs! Thanks for the warm welcome! Sorry the clinical trial did not work for you but Xeloda sounds like it really is doing well for you. My oncol. did not mention which chemo drug next, but I have a hunch it will be Xeloda. I made it loud and clear to him I did not want to be on anything for which I would loose my hair. Sorry y'all, I do draw the line somewhere. No one knows about my stage 4 diagnosis and that would certainly be a dead giveaway, hair loss, and besides, I don't want to loose my hair. It's enough I lost one breast back in 2007 and could not have reconstruction due to whole radiation I received back in 1991.
Thanks holinone. Hi artist, we meet again! Yes, a terrible gut blow, I just don't think I'll be receiving any more 'good' cat scans as I feel the cancer will go from here to there each time from now on. I probably have it in my brain as well and I will NOT have an MRI for that, went thru that once before and cannot tolerate that. It's just so depressing for me right now. Sorry I'm venting on everyone but I do really appreciate everyone's help. Just a real bummer.
Is anyone following a certain diet with these liver mets? And I'm sure and hint of alcohol is out right? Anyone taking any particular supplements for bc related liver mets? Thanks everyone!
One thing good is the cat scan said my liver is normal in size, and, according to the latest blood work, my liver blood work showed normal.
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Nature gal. Don't give up. I know it's easier said than done. I was pretty down and then low and behold Xeloda brought me to NED. I NEVER thought that would happen to me!!!!
Timothy. Gals your wife is doing better. And what a wonderful time for you all- your daughters wedding. Congrats!!!!
Babs
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hi nature girl, when I was first diagnosed with liver mets almost 6 years ago, I stopped drinking alcohol. I also ate a lot of garlic and onions which is supposed to be good for the liver. I drank warm water and lemon juice first thing in the morning ( it's supposed to help detox the liver) and took milk thistle.
I have been Ned for 5 years now and I no longer take milk thistle or the lemon juice, but I still don't drink alcohol.
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I also drink warm water and lemon every AM. and only have one drink per year-on New Years Eve !
Babs
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Nature gal, welcome. I just started Xeloda last month. 2 weeks on and 1 week off. I admit I skipped yesterday and this morning but I will take it tonight as usual. I needed a tiny break. I will speak to my onc about lowering the dosage for sure.
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My wife has completely given up drinking. She was taking a lot of supplements prior to chemo, but has really backed off for fear of interference or overloading her liver. She is taking milk thistle during her breaks from chemo. She was taking a lot of mushroom extracts prior to chemo to boost her immune system, and it really did work. Her neutrophils went up to 3 point something, whereas previously they had been down around 1.3. But, once again, out of fear of intereference with the chemo, she really cut back. It shows with her low neutrophils once again. She takes curcumin between chemo cycles, and also bromelain.
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Timothy. Check with her MO to see what they recommend or don't want her to take
Bab
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Here's an earlier post I made in this topic/thread https://community.breastcancer.org/forum/8/topics/809420?page=104#post_4693541 it might be helpful for others now. Stephanie
Apr 14, 2016 07:40PM Longtermsurvivor wrote:
Hi All,
Haven't had much to contribute recently, as I'm on a different path with liver mets. Hospice choices differ from treatment choices, but I thought of something that might be helpful for others with compromised liver function - different routes of administration for drugs.
I learned this from MTF transsexuals who were taking estradiol to develop female sex traits. For a couple of years I took estradiol for my ER+ breast cancer in an effort to both treat it directly and to resensitize the tumors to anti-hormonal aromatase inhibitors. Another, longer story.
I learned from these women that allowing the pills to dissolve under my tongue softened their effects on my liver. It's a method of action called first-pass effect. By allowing drugs to enter the blood stream through the mouth, rather the stomach, their first pass through the liver was detoured.
I'm probably not describing this completely accurately, but now that I'm taking liquid morphine for pain, I've been given the same advice - hold the medication under my tongue or inside my cheek until it's absorbed, rather than swallowing it to spare my liver. Also, I can take less of the drug to get a bigger effect.
Here's wikipedia on the first-pass effect:
excerpt: Alternative routes of administration like suppository, intravenous, intramuscular, inhalational aerosol, transdermal and sublingual avoid the first-pass effect because they allow drugs to be absorbed directly into the systemic circulation.
https://en.wikipedia.org/wiki/First_pass_effect
You never know when or how you'll find helpful tips for working with our already stressed-out bodies.
And I'll never know if this actually helps drug absorption or just helps me feel better about it.
Blessings and good healing regards for the entire bco world, including this special liver mets community ~ Stephanie
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naturegirl, I am sorry you joined our club and I hope you and your onc soon find the right med for you to kick those mets back. You will find a lot of information on this thread along with wonderful and supporting ladies. You are welcome to come here and vent anytime you like.
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Stephanie
Thanks so much for that explanation about medication and the liver. I take my fentanyl as a spray under my tongue as well as my zofran under the tongue. But I take my Xeloda, Ambien, Citalopram, and Oxycontin as regular swallowing pills.
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Christina, you're welcome!
Before changing your treatment delivery method, be sure to check with your healthcare providers.
You might want to taste too as some meds are foul. Or enteric coated.
warm healing regards, Stephanie
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thanks cjanet, good luck with your new med and please keep us posted.
I would like to know if anyone is following a certain diet who has liver mets? I'd like to know what y'all eat and don't eat, according to first hand info, y'all. I'm also thinking I may reduce my vitamin supps. Anyone taking any certain vitamins with liver mets or has discontinud due to liver mets? Any info would be helpful. I can get quite serious about my diet and follow it if it will help me with liver mets.
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Diet is a powerful tool in fighting cancer. The main thing you are looking for is an anti-inflammatory diet as inflammation has been proven to strongly promote cancer growth. Dr. Weil has the classic anti-inflammatory diet. My personal favorite is Anti-Cancer a New Way of Life. The cancer diets share common threads - like low refined carbohydrates, a wide range of vegetables. Pick up a couple books and follow the one that speaks to you.
I am on an aggressive supplement routine that includes vitamins and herbals. I have liver mets and things are improving under the regime I am on. Milk thistle (sylimarin) is the classic supplement to promote liver function. However, if your instinct is to back off on supplements to protect your liver, I would not hesitate to do so. Your instincts are very important in directing the course of stage IV treatment.
I believe in supplementation for cancer treatment, but I do think it is a mistake to pursue complementary cancer therapies without the oversight of a complementary or integrative MD. Supplements are medication, just not under prescription.
>Z<
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I didn't stop taking anything due to my liver but I did stop taking Vitamin B, chromium and a multivitamin due to their potential to help the cancer cells recover. There have been some small studies showing that these *may* help the cancer cells. Not worth the risk. I also used to take SAM-e for a combo of depression, joint pain and liver function - it helps all of these and I had good results. However, there are some mixed small studies about SAM-e and breast cancer too - it seems to help cancer regenerate on hormone therapy but make some chemos more effective (because it helps the cancer regenerate/become more aggressive, making the cells more susceptible to chemo.) Although I don't specifically avoid anything due to my liver, I do think twice before taking other medications/supplements and ask how will this impact my liver, will it be hard on it, do I need to take this, is it overburdening my liver to take with other medications, etc.
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JFL - A thoughtful and wise approach. I'd be interested in reference to the studies you mention.
>Z<
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Hi Everyone. Jumping back in. Just starting with this page.
Artist, that is so great that you had such a successful yard sale. How wonderful to have less clutter and more cash. Congrats on the car and the good second opinion appointment. I have to say I shamelessly purchase the new dress or jeans if I find something just right. I'm all for anything that can help me feel prettier and younger in the face of these cancer drugs making me feel tired and old.
Naturegirl, don't give up hope. I have to think that normal liver enzymes are a good thing. I second what Babs says. The right drug could really zap those tumors. Xeloda worked for her and Taxol worked for me. I agree with avoiding alcohol since it is hard on the liver. Also I prefer aspirin to tylenol/acetaminophen/paracetamol if I really need something for a headache (which isn't often), because the tylenol insert has liver cautions. I am generally a minimalist with OTC medicines. Which made me shake my head to find myself on five different drugs every taxol infusion day.
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18 months ago liver mets popped up and I had to change my treatment. I went on a trial (GDC-0032 + letrozole) and the mets went quiet. They're not even showing on the scans anymore (if the rest of the mets/tumours would just follow suit!:) ) I kind of lost my taste for alcohol...which might just be me listening to my body and my liver saying nope. Since I'm on a trial I have to really limit supplements. I switched from predominantly oral painkillers to a fentanyl patch (although I still use hydromorphone as a breakthrough). Never discount lots of water to flush the liver when you can't have things like milk thistle!
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zarovka, thanks for the information. I just pulled up & read Dr. Weil's anti-inflammatory diet. I'm glad to hear things are improving for you on your supplement and herbal regimen. I had been taking three 500 mil. high potency vitamin Cs daily but decided to cut back to two and rather than take the two together, take one in the morning and the other in the evening.I also have nodules etc. in my lungs so I thought the Vit C would help that. I was also taking Calcium/vit D vitamins for which I am going to cut back on as well. I want to try to protect my liver and if it has to absorb the Megace(is what my oncol has me on at this time) then that is what my liver has to contend with. Luckily, I do not take pain relievers daily, but every now and then, I take an ibuprofen(400 mil) but I think that may have to change as well. Will talk to my oncol. on that. Yes, I want to revamp what I'm putting in my mouth, both in supplements and in food with the idea of helping my liver. Now I did read recently that cappage and broccoli can be hard on the liver. and, not to drink caffeine or soft drinks and of course stay away from alcohol. I may look into the milk thistle thing, is it a liquid? I'll ask my oncol. as well about that. Thanks zarovka
JFL, thanks for your information as well. I too used to take a multi-vit but quit that many years ago. Yes, one has to think twice and now consider their liver before she swallows food and/or vitimins.
Thanks ShetlandPony on your input too. I incorporated a baby aspirin in my regimen daily as the Megace, or a potential side effect in taking Megace is blood clotting. I asked my oncol. first and he said he thought that was a good idea for me.
MsTee, thanks for your input. That is great the mets are not showing on your scans due to a trial you were on! Guess you are having lots of pain since you use fentanyl patch?
Others, please join in and tell us what you eat and what you stay away from since you have liver mets, as well as supplements, taking or discontinuing use. Thanks everyone!
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MsTee - Would you share the trial you are in? Is it a Phase I/II? What drugs is it in combination with? How are the side effects?
I am so glad that things are going well for you. I have some liver mets I would like to see disappear. There are many interesting breast cancer clinical trials involving the PI3 Kinase Inhibitor Taselisib (GDC-0032). They appear to all be early stage. They may be of use to people on this forum now or in the future.
>Z<
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I just try and use comon sense about anything and everything that I put in my mouth. Not that I don't have my weak moments when i go for the dessert.....Plus both of my Oncs have said that since my liver is not yet compromised as far as function, an occasional glass of wine will not hurt. I had one the other night while on vacation with my family. Not used to it and slept like a log. I try hard to incorporate fruits and vege's into my diet every chance I get, although what is the reasoning with the cabbage and broccoli??? I am not a big meat eater especially processed ones like bacon or lunch meats. I try and avoid refined carbs as much as possible. I should avoid caffeine more although I do love my coffee and chocolate. I have occasional soft drinks for indigestion but try and do sparkling spring water rather than say Pepsi.......Reading all of your posts I have begun to consider a few supplements to add...It makes me very hopeful to read about all the new trials going on as well.
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I wonder if taselisib might be an easier alternative to afinitor (a.k.a. everolimus, which is given with aromasin). They both address the PI3K pathway, right?
I won't give up broccoli and cabbage, because they are super cancer fighters.
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yes, naturegirl2, I have a lot of bone pain from my mets. I have a low-level patch, but it's still serious pain management. I've had rads, which helped, but not enough
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Zarovka, it's like you read minds.
I'm in a phase 1 trial for GDC-0032 in combo with Letrozole. I'm coming up on 18 months. It has some issues but doesn't everything? Overall, pretty tolerable, just digestive issues, mostly. Rapid bowel transit, bad stomach...not unbearable I just had to pause for rads because I've had some lymph node growth (to an existing tumour), but no spreading since I started the trial. I restart in a couple days. -
Shetlandpony - I've not used affinitor yet. What makes it not easy? The biggest challenges I've had with the GDC-0032 have been digestive: rapid transit, diarrhea and difficulty eating as much raw veg as I like. Happy to answer any questions or speak to specifics?
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Afinitor (everolimus) is a class of PI3 Kinase Inhibitor, specifically an mTor inhibitor. PI3 Kinase pathways are a component of all cell growth. Everolimus turned out to not be highly targeted to cancer. It broadly attacks normal cells as well as cancer causing dangerous side effects. It was a drug that got fast tracked FDA approval. There are people who feel it does more harm than good and the FDA approval should be withdrawn.
My oncologist is one of them. My oncologist was very skeptical of Ibrance because she got burned prescribing everolimus when it was approved by a similar fast track process. It took her quite a while to warm up to Ibrance and she's still a bit cool to the stuff. All these clinical trials use progression free survival as an endpoint and PFS doesn't translate to long term survival ... but that is another rant.
There is a huge amount of ongoing research into inhibiting PI3 pathways because it is still a promising target. The PI3 pathways are one of the pathways that become deregulated in cancer cells, causing uncontrolled growth. The PI3 pathways are diverse and complex, so the problems with everolimus don't mean that PI3 Kinase inhibition is a bad idea. Taselisib is one of the new PI3 kinase inhibitors in the pipeline. I am so glad to hear from someone who is taking it and doing well. It is amazing to be stable for that long! Please let us know how it goes.
The PI3 pathway may be one of the ways cancer gets around CDK 4/6 inhibitors (Ibrance). The "ibs" may be a tool to prevent or reverse resistance to Ibrance.
>Z<
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My onc was thinking of aromasin plus afinitor for me as my first treatment after taxol, but then Ibrance came along. Afinitor sounds more scary to me, but I have not researched it in depth. On this BCO web site, some possible serious side effects listed for afinitor are severe lung and breathing problems, serious infections, and kidney failure. The common side effects listed are mouth sores, infection, rash, fatigue, diarrhea, and decreased appetite. The issue of whether a drug that extends progression free survival can also be shown to extend overall survival is actually more complex and nuanced than might be expected. See the thread "Better PFS but not better OS?"
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scan day for me today. First one since being off Xeloda for 4 weeks for my vacation to Ireland. Probably should have waited for another day to do this since I only got back last night from my trip. Very jet lagged. Wish me luc
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lefty, in your pocket for excellent results. I am the tall one, playing the tin whistle......lol...
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Leftfootforward, how exhausting. Luck of the Irish to you. In your pocket, too. I'm the one dancing to the tin whistle.
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Hi all. Scan tomorrow. Am nervous but an expecting good results since tms went down to 49 from 198. Two more chemos and then we talk about liver embolization and hopefully maintenance drug. I asked my onc not long ago about achieving NED, he says only about 1% achieve this but reading the posts here and on other discussions it seems more than 1%. I hope to get there. Hope everyone feels good and stay positive. Yes it's hard and I sometimes find myself thinking about dying in a year or two but I'm going to fight and kick butt in the meantime. I have not changed my diet too much try to eat more veggies dr says some alcohol won't hurt but I don't drink really anymore or take aspirin or anything that makes the liver work hard. I am going to start making the Rick Simpson oil soon, hoping that gets me to ned.
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It's more than 1%. I'm still here and going strong 91/2 years after being diagnosed with liver and bone mets. Good luck!
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thats awesome!! 😉 I figured it had to be more then that.
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Leftffot and LvinAZ-I'm right there with you while you get your scans. Hoping for great results!
Babs
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Leftffot and LvinAZ - hoping for great scans.
lvinAZ - patients who are NED and patients who have stable tumors have statistically the same long term survival rate. tumors can go dormant or necrotic and not do much. the scans see them, but they are dead/dormant cancer cells that are not metastasizing. micro metastasis, which can't been seen by scans, seems to drive the disease.
that said, i've reviewed the statistics at length and, mentally, i want to be NED.
>Z<
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thanks everyone.
Thanks to electronic records I know tonight that my scans were clean. There was no evidence of metastatic cancer found.,
It's a huge relief.,
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That's fantastic Leftfoot! Wow, celebration time.......Happy 4th also. Thinking of you too Lvin, best news on the scans. I am sure we all know what you mean Z about the mental benefit of being NED....I try and remain hopeful for upcoming research and my hopefully excellent response to SOME Tx. However, the second day in on my vacation I had a very bad private meltdown after someone close to me described something they saw as a Nurse's technician in an ICU unit. I don't think they even realized what they were saying but it hit me HARD. After the meltdown I recovered for my families sake but it has been stuck in my brain regardless.
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LvinAZ, good for you! You sound stronger.
Leftfootforward, YES!
Artist, I'm sorry you had that happen, especially on vacation. Universe, are you listening? Artist needs a break!
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Congrats Leftfoot, so happy to hear your good news!!!
Alissa
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Yes! Congratulations! That must have been the sweetest music to your ears.
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artist- hugs. Yes world artist beds a break.
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artist - you might try some kind of mental clearing ritual, like projecting that mental image on a piece of paper and burning it, with a lot of kindness for the person in the ICU. if you think about it, you likely have your own tricks and resources to deliberately clear darkness.
i am afraid. dealing with this cancer, there are so many avenues for terror to make its home in my mind. i take a moment with my aunt every week to find all this stuff and we let it go. in your case, you know what got into your head. but it's amazing what accumulates and you don't even know.
sending light and support your way.
leftfootforward - yay. great news cheers us all up.
>KNC<
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lefty, great news ! nothing better than that.
Artist, sorry. Our minds have been working over time, to get us through this. Mentally & emotionally I feel much more vunerable.I hope the rest of your holiday is all "FUN".
My tumor markers went up last week by 5 or 7 points. Please, someone tell me no worries....
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LFF. Great news. Sooooo happy for you👌👌
Artist. We all have those moments where we go to that dark place. Hoping for some good news from you soon !!!!
Holeinone I don't think that small a rise in your TMs is something to worry about.
Babs
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holeinone- my markets fluctuate like that a lot. I wouldn't worry. Lots of things effect the levels other than cancer. Try not to let it bother you. I have taught myself not to worry unless they continue to rise on multiple blood draws. Easier said than done. Hang in ther
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onc and I decided today to stay on Xelida but not add the targeted therapy back in at this time. I will stay this route until sonethibg changes. I'm ok with that.
Here is to us all hanging in there.
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Thanks so much all you wonderful ladies for your compassion and understanding. I did recover the next day to enjoy the rest of my vacation. I know these moments come and go and they will continue to do so. As Z says, many small things build up, and then that one "thing" just sets it in motion. Being down there with my girls reminds me of how far away they are and we only see them maybe 3 times a year now. So I was feeling a little sad already. Luckily I am pretty good about bouncing back quickly. As Holeinone says, we are so much more mentally/emotionally vulnerable now.
Anyway, we are back home now. I went and had an XRay on my wrist and it is not broken, only a very bad sprain. I am mad at myself for being so klutzy because I have 10 weeks off for summer which is when I ride my bike, play my guitar and make jewelry. All of those things are completely hampered now. Oh well, I'll find something else to enjoy my time. I'm feeling better so thanks again everyone. Holeinone, my TM's, when they go up they skyrocket by several hundred so I think you are good, I wouldn't worry either. Best to everyone, hope you are all enjoying summer!
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Artist, so glad you were able to recover and enjoy the rest of your vacation, so sorry about your wrist, though! I just had my second Ixempra infusion yesterday. When speaking with my oncologist I mentioned my left leg was bothering me quite a bit so he sent me after chemo for a scan. Called last night to tell me the tumor in my iliac bone was growing and recommended a round of radiation (5-10 treatments). I've never had radiation so am a little apprehensive. Will see the radiation oncologist Monday morning, I haven't seen the ct scan report yet but he didn't mention the liver mets so I'm assuming they are stable. Sure hope this Ixempra kicks them to the curb.
Holeinone, my onc doesn't put much stock in the tumor markers. He rarely orders them and says they just aren't a good reflection of what is going on for everyone, they definitely aren't for me. LFF, sticking with the xeloda sounds like a good plan. I wish I could have gotten some time out of it. All we can do is hang in there and hope we have a little bit of luck with each treatment!
Other than that, I'm just so sad about what is happening in our country with all these shootings and I pray for sanity. I'm not a gun person myself and understand those who enjoy hunting and shooting for sport but sure don't see why anyone needs these ar type guns. Hoping these riots don't last all summer and we can restore some order in our cities.
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well scan shows need of liver and lung. Liver has shrunk and is leaking fluid so dr concerned with that. And just try vent, my bf kicked me out so I may be moving Back to Ohio. Hate to leave my dr but.. very emotional night and morning.
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((LvinAZ44))
((Dallas))
>Z<
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LivnAZ, do you mean NED for liver and lung? I'm sorry things are hard right now, and I really hope everything will work out the best for you. If you do decide to go to Ohio, your horse is in there, right? And your family? You can find a good doctor there if you need to.
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hugs livin
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lvinAZ, I'm confused by your post, too. If you are NED liver and lung that is great news. What is wrong with your boyfriend? Where in Ohio would you go? Changing doctors is a pain, especially if you like the one you have. Sending hugs and hoping your Bf straightens up (if you want him to ... LOL).
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Gatorgal, That is great that the liver mets weren't worth a mention! Stable is a lovely word! You have been through a lot and I have high hopes that your current treatment lasts a very long time. I am with you on all of this violence around our country and the world. I worry so much for my children. Lvin, I HOPE that you meant NED which would be fantastic! Sorry about your living situation but maybe the change will be more positive than you expect? Unfortunately I had yet another blow today as the Ibrance is messing up my live enzymes again so have to try the 75 mg. If that doesn't work I am off that as well. Seems like I am blowing through Tx pretty quick. Trying to keep a stiff upper lip here but sure wish I could cruise along for a good stretch without any drama....
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Artist I know it gets discouraging at times but hopefully the lower dosage will be the key for you!!!!
Babs
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Thanks babs! I am trying so hard to roll with the punches but some days...... U Know! I always come here to vent and feel the love!
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artist this is truly our safe place!! When I blew through 2 treatments in under a year I was so discouraged and down so I know how you feel. I'm hoping the lower dosage works🙏🙏🙏🙏
Bab
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The reasons j keep fighting.
This is Kylemor Abbey in the background. We had a great 3 week vacation in Ireland.
One foot in front of another. Keep fighting.
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Leftfootforward,
Beautiful
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i asked the Dr if he would now consider my scan n e a d. He said yes. I really like him and his staff I hate to change docs now. Shetland, yes my horse is there and there is another one my sister wants to sell but can ride him country pleasure which I love. Hugs to all
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LvinAZ44 - The transition sounds hard but it has all the signs of a new beginning. I expect we'll be hearing from a happy, healthy, horseback riding LvinOH06 in 6 months. Congratulations on NED.
>Z<
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I hope so too babs. Plus I keep waiting and hoping to hear of new things that can keep us going. I try to think "one day at a time". leftfoot, Beautiful family picture there! What a wonderful vacation. I am Irish and my grandparents and parents always talked very fondly of their "home" so I would love to see Ireland some day!
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Okay people, I have more questions. I'd like to know how long you have had liver mets from BC, which drug/drugs are you taking due to liver mets, if they are helping and how long, thus far, have they helped, and, if you have lost your hair due to meds from liver mets. Sorry for all the questions but this is the place to ask.
Thanking y'all in advance.
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Naturegal. I've had liver nets which were diagnosed in Ictober 2015. I've been on 2 treatments that didn't work. I started Xeloda in January 2016 which brought me to NED. I haven't lost my hair. Some thinning on Ubrance but that's all
LivingAz NED is fabulous. Glad you've joined me there. I only wish everyone was with us!!!! With NED you can make any transition. Seems you're better off without a bf who would desert you now.
LFF great picture. Thanks for sharing
Babs
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nature gal- I was diagnosed with live mets in late November of 2012. I was also diagnosed with brain mets at the time. Was placed on Xeloda and tykerb ( for brain mets). Have been on xeloda ever since., tykerb was changed to herceptin in June 2015 as I developed a single liver tumor. I had a partial liver resection in July of 2015 to take care of it. I was taken off herceptin in March 2016 due to heart issues. So only on Xeloda since then.
I have kept my hair throughout., other than then one tumor ( which appears to have been mutant) I have been NED since starting Xeloda.
Plan is to stay on Xeloda until something changes.
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naturegirl2...I landed in ER in Nov. I found out my liver was covered in tumors. The doctors gave me that "look". I started on chemo, AC, and it helped! Scans show my liver shrunk and so did the tumors. I received my lifetime dose of AC. I did lose all my hair.
Got a $ report from Foundation One that stated the newly approved drug Ibrance is targeted for me. I started on it @125mg and landed back in the hospital. Too much for my body
I started on 75 mg on 6/24. So far it's tolerable, and my hair is growing back....hope this info helps -
Naturegirl, my liver mets were innumerable. It was scary how protruded my gut was & how hard the liver felt. I just finished 6 doses of Taxotere, which showed good results after the 4 treatment. Lots of spine & bone mets popping up.
I did lose my hair, really looking forward to have it grow back. Mo'snext plan is for me to get the Faslodex Shots, once a month & Zometa.
Retz, who are the Foundation One? I was told here to look into Ibrance. Seems lots of ladies are receiving it.
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Holeinone...my onco dr told us about "Foundation One". They need a piece of your tumor on a slide/ dna and they found how my cancer mutataed and the 33 pg report said that Ibrance is the targeted drug for me. Google, Foundation One, they do non profit it's a 2 pg application and they might pay for it
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LivnAZ, that's amazingly wonderful news that your scan showed NEAD!
Naturegirl2, to answer your query: Liver mets found about two years ago, taxol wiped them out in three months and also took my hair; now I am maintaining on Ibrance + letrozole and have short hair.
Artist, so it looks like Ibrance may be the prime suspect for your high liver enzymes, right? I hope the lower dosage will be doable. Don't forget there are those who get many years out of a hormone treatment alone.
Zarovka, you have such a fresh way of looking at things! (e.g. A new beginning, a cleansing ritual.)
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Retz, for what target gene alteration was Ibrance noted on your Foundation One report?
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Thanks Shetland, I sure am hoping to find one that I get many years out of. I have so many things I want to do! I hope the lowered dose does it because yes Ibrance looks like the culprit. Shetland, How is the decluttering going? Have you been able to get a plan of attack going? Our stuff has been building up for so long, between the yard, garage and house, it seems like it breeds in the closets! But we have been tackling it one little piece at time.
naturegirl, I was Dx almost 1 year ago with a couple of liver mets. Did the Femara/Ibrance combo first, and my scans showed improvement, but my liver enzymes became too elevated. So I switched to Faslodex only. That failed, so now am on Arimidex and Ibrance at a lowered dose 100 mg. But again my enzymes shot up so now am going to 75 mg. Have another scan in August to see how Arimidex is doing. Onc says I can return to Femara if need be.
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naturegirl - I was diagnosed in 1/16 with ERPR+ 5-6 small (<2cm) mets to the liver and possible mets to sternum. I started on Ibrance and letrozol in 2/16. In 3/16 I did 3 weeks of alpha lipoic acid IVs and started a complementary therapy protocol. My tumors had shrunk by half from this regime in the pet scan I had in early 4/16. Next scan is later this month. No hair loss on this regime, but side effects are life changing. no estrogen leaves me weak and the ibrance does make me tired, and has some other weird consequences.
>Z<
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Back from vacation and I am bleary eyed from all the reading to catch up with you all! So much good news, though! I'll not be able to comment on all as I would like but... Yay, Babs and Leftfoot and Mattifang! So great to hear! Livin, I do hope you mean NED and your horse is indeed, beautiful! So sorry about the falling out. I do hope what is best works out for you, Ohio or wherever. If you were in Columbus I could recommend the perfect doctor for you. Artist, great about the car, but hating the enzyme thing. You do always find the bright side. I was just thinking this about you when you spoke about your wrist and usual summer activities begone. You'll just find something else to do. I do hope the lower dose continues to work well and the something else drug is a ways out yet. I feel just the same about my chemo being reduced and reduced and now gemzar is out altogether. Hoping for the best on Tuesday with just the carbo. Zarovka and Shetland - NED feels like such a pipe dream to me given the amt. of cancer in my liver and its aggressiveness that I thank you so much for sharing the info that stable may be just as good. I'm gonna go ahead and believe that. I just can't stand reading those median survival stats though. I'll just have to keep believing I'm above average..way, way above and beyond! Welcome, naturegirl! I'm with Artist about the diet. I do common sense, healthy eating, sleeping and exercise. Like Zarovka, I read The Anti-Cancer book applied many of his suggestions particularly those about food but I'm not super rigid about anything. I do plan to check out the Dr. Weil thing Z mentions. Anti-inflammatory foods are important I think so I keep all the cruciferous veggies as Shetland mentioned.
I purposely stayed offline during vacation but I did miss you all and snuck in a read about halfway. I left cancer behind for a while, mostly. Of course, thoughts came here and there and I had a few drip drops of tears at a few sad thoughts that popped right in the brain without my permission. The worst was my gazing foundly at a mom at the beach and her 4 sweet young girls. They were such a beautiful family and for some reason I imagined her so close with them throughout their growing up and getting married and having their own families and her just being there for them always and then I began to feel robbed and I was just so jealous because I am sure that mom didn't have cancer but then again how would I know what she has. You know the stupid thoughts. Anyway, all in all it was a good time but I am glad to be back home. I love home. Chemo Tues. Wish me luck with the carbo and no allergic reaction. Best to all!
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Welcome back, Kaayborg. May your carbo go well. I've been reading about immunotherapy and it seems like you are a candidate for immunotherapy. Here is one list of clinical trials. And here is another. May Carboplatin be easy and work for a long time, but Immunotherapy is something to start researching. Immunotherapy has been accepted as promising for breast cancer, particularly TN HER+ and heavily treated cancers. You want to wait as long as possible to try immunotherapy because it's highly experimental, but I'm watching it for down the road, if needed.
>Z<
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Artist, thanks for asking. Decluttering is not happening yet, but your success is encouraging and inspiring! I have recognized that I have to choose one thing at a time, so for the next few months I will spend my time and energy on my dance groups. Then when things slow down there, I will turn to the decluttering. I plan to opt out of the big extended family Christmas gift exchange, so I can use the time and energy for decluttering instead.
About the weak and tired that Zarovka mentions, do you guys ever think something like this because I do: Wow, I am doing so many healthy things that if I were a "normal" person my age, I would be in super shape and feeling great. But as it is I can barely maintain.
Kaayborg, welcome home. I understand about trying to leave cancer behind on vacation. If only we could leave our fatigue at home too. My vacation had some good parts, but overall did not live up to expectations because of several things that happened. It made me feel like spending money on a vacation is too risky. During mine I got lonely during the night and went on BCO a bit too, in spite of my prior resolution to stay off. I really get what you say about the family on the beach. I sometimes cry when I see beautiful little children and think I will probably not know my grandchildren, and that my kid will not have a mom for support. Then, somehow, hope reasserts itself. Just in case you haven't read it, see below for The Median Isn't The Message by Stephen Jay Gould.
http://www.phoenix5.org/articles/GouldMessage.html
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Shetland, I had not read that article and I love it! Thanks. Z - my doctor wants me to do an immunotherapy trial next. She says earlier is better for effectiveness but feels it would be a mistake to leave my currently effective chemo for it. I have high hopes for the trial from what I have read but patiently wait for it wanting to get the most out of carbo first. I'll be trying for a PDL1/abraxane combo. I read that for some tnbc patients this is game-changing treatment having gotten 5+ years out of it and counting. There is a trial at OSU now accepting 2nd line patients.
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babs, thanks for your response. That is super good news for you, NED. Since I was diagnosed with Stage 4 back in Nov. 2012, I was never NED from that day on no matter what meds they prescribed. It must feel good! Congrats. So encouraging!
leftfoot, wow, fantastic, another NED! Way to go girls! Glad y'all did not loose your hair either!
babs and leftfoot, any SE's from Xeloda?
Retz, that is great AC shrunk your liver tumors. Never heard of AC. Hope Ibrance does well for you.
Holeinine, that must have really been scary for you. Glad your meds helped you. Thanks for your input.
Shetland, thanks for your input as well. Great your meds wiped out your liver mets in 3 months, sorry you lost your hair. Good luck with Ibrance.
Hi artisthea, did you have side effects from Arimidex, did you loose your hair? Good luck to you as well with your reduced amt of Ibrance.
Thanks all for everyone's responses. It's been very helpful to me. I await my oncol. appt. that is this Wed. Showdown for sure. Megace, my prescribed med for 5 weeks, just is not cutting it for me. I have been taking 400 mil Ibuprofen every 6 hours as well to try to keep the pain down, my poor liver, how much can it take? My oncol. knows I will not take any med that I will loose my hair, sorry, it's the way I feel and I put my foot down at that point.
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naturegirl, Like Z I get very tired on Ibrance, even the lowered dose. Also my nasal passages get plugged up much like a bad allergy attack. So at night I end up breathing through my mouth while sleeping, get a very dry mouth and pressure headaches. I did notice the first time I did Ibrance the headaches subsided after cycle 2. As far as Arimidex, I did not lose any hair and no SE's that I can tell except a little achier joints, knees, ankles, hips.
kaayborg, Nice to see you back. I'm glad that all in all your vacation was a good time. I went for a week too and had mostly a nice time, but like you I love home. I am a classic homebody. I can spend all day just tinkering around my house and be happy. I know exactly how you felt gazing at the mom and her girls as I find myself doing the same. Looking at people living their lives looking so happy and carefree. I too assume they have no traumas going on, they will be there for their children and grandchildren and I feel so jealous and sad. Then I feel even more isolated and lonely. This is all so hard. I can't stand to look at stats either as it brings me right down. I mostly try to believe I will be above average and that new treatments will quickly continue to be developed and they will get better and better! Because really the only other choice is to live in a black hole which would be a waste. We are all wishing you a great Tuesday with your next Tx and no allergic reactions and you keep on it for a long long stretch!
Shetland, I think choosing the dancing is a way better choice than worrying about getting your house in order. Just to get out and move and be with friends and feel the exhilaration of dancing sounds heavenly to me! Remember the old poem about how the cobwebs will wait until you do the things that really matter? I think you are awesome for pursuing your passion. We also have opted out of big Christmas exchanges. Mainly because, lets face it, none of us needs more "stuff" or the stress of picking out more "stuff" for someone else. We just get together and party. And yes I do think about what great shape I would be in if only.......Last July I was riding my bike 15 miles a day in the summer, I skied last winter. We lose soooo much......Nice link too, thanks Shetland! I need that stuff.
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Yes, and I don't know when the ability to dance might be snatched from me, so I am going for it. A nice home to putter in sounds heavenly and matters to me, too, so I look forward to getting closer to that come winter. Then my garden. I hope. Then I will have everything I want.
By the way, I understand dry mouth can be bad for your teeth. During chemo my nurse recommended Biotene dry mouth oral rinse. I still use it occasionally. I use their "PBF" kind because that one has no parabens.
Kaayborg, that sounds like a good plan. Is your onc pretty sure there will be such a trial available when you are ready, then?
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Shetland, my onc actually said that immunotherapies are close to market. My optimistic thinking is if carbo fails soon, I should be able to get into the trial at OSU or a larger trial. If carbo lasts long, then maybe the treatment will be standard care. But basically, it's as much guess work as anything else. Ultimately, I completely agree that we don't stop what works.
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Yes. This forum is the Lake Wobegon of breast cancer. Like the children of Lake Wobegon, we are all above average.
I ran, well jogged, slowly, one mile this morning. And it was kinda all downhill. I am far from my half marathon days, but still it was quite a way to start week 2 of cycle 6 on Ibrance. Kudos to all for your amazing accomplishments as we dance and walk and fight our way through these treatments.
Keep as healthy as you can because there are so many options for us coming down the pipeline. (I've been reading, again.)
>Z<
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You are one energetic lady Z! I did go on a nice little hike to the lake with my DH and dog. Probably only a half mile and I was breathless by the time we got back to our cars but it sure lifted my mood.....
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I bicycle rode this weekend for the first time in over 40 years!!!! Didn't know what gearswere for!!! My heart was pounding. Before bc I was working out 4-5 times per week. Now only a little in a study at Mskcc. I really need to work out again. Hopefully I'll start soon unless I find another excuse not to!!
Babs
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I train with a trainer 3x per week. Doesn't help with my weight but I am stronger. In Ireland many days I had hiked/ walked over 5 miles according to my Apple Watch. Glad I took a Xeloda holiday as that certainly helped. I will admit I couldn't keep up with my kids but at least I was still out with them. It is very hard to be active on this regimen.
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I'm starting to run after being encouraged to do more cardio by my onc (walked, did yoga, and rode my bike short distances before). I'm on the couch to 5K progression, though I don't up the intensity every week but rather on my own schedule when I feel that it's become a bit too easy and that my heart rate no longer meets the rigorous level. Currently I run 3 min walk 1.5 min, run 5 min walk 2.5 minutes, then repeat. I thought I would hate running but it turns out I like it a lot and it truly does give me more energy. I too think that if I didn't have treatments knocking me down a bit, I would be an energetic wonder. I do regret that I didn't do this years ago. I feel so great! Not sure what to do once cold sets in. I love it b/c I'm outside. Started in the spring.
Anyway, I had chemo today but platelets were discouraging. Only 80 after a three week break and only half the carbo cycle. No way I'll pass next Tues but they still want to try for it. If not we'll try for treatments on days 1 and 15 instead of 8. I doubt that's gonna pan out either. I also need to slow the infusion even more as I had another allergic reaction, though I caught the symptoms earlier and it was much easier to control. Feeling in limbo but do agree that we must just keep trying it and see what happens.
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kaayborg - you are one tough lady to face down that infusion allergy drama weekly. it is a good plan to hang in there and keep trying, but it's got to be hard.
i am starting to feel a bit lazy after listening to all of you guys talk about all the exercise you are getting. time to get to the gym ...
>Z<
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My wife's ascites has really gone down. We are now only draining off 100 ml per four days. The Doctor thinks its entirely due to the diuretics, but I am optimistic that a fluid accumulation that has gone down from 5 liters to 100ml (50x change) is due to more than just the diuretics. The Doctor has as of yesterday, put Bev on blood thinners, a daily injection, to try to improve blood flow through her liver. And, he is talking about having a shunt installed. I'm skeptical that is needed. From what I read, a TIPS procedure should be a last resort, when nothing else works. It seems to me the problem is either nearly fully resolved, or treated with the diuretics. I hope they think this through fully before proceeding. I think he is acting based on her status a month ago, and not right now. As someone advised, trust your intuition. And our intuition is questioning this.
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Timothy, that sounds like good news to me. Are you able to get a second opinion about the shunt? I believe I remember you mentioned difficulty with this before but can't remember why. I think you are right to question and trust your intuition. A second expert opinion helps too. It made all the difference to me when I questioned a plastic surgeon's care. The second opinion did much to confirm my intuitions were indeed correct.
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Hi Timothy,
That sounds like such good news!
I'm so happy that your wife's annoying ascites symptom has been eased and hope she'll be released from it as treatment proves effective.
BTW, it's not just intuition but logic that says - why go chasing a trouble that was there then, but isn't here now.
There's plenty to attend to in real time and there's no time like the present to enjoy the now.
warmest of hugs for both of you, Stephanie
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Hi Artist,
I too deal with dry mouth (aka xerostomia).
This recent Smart Patients post had some great tips -
https://www.smartpatients.com/conversations/22125-...
(free registration required)
I'm going to try marinating meat before cooking it and also more soups, stews and moist foods. Unfortunately, my giant liver is pressing my tiny tummy, so I can't fit in much bulk. Nutrient dense food is a must...though watermelon is very, very good too.
Artist, hoping you find some mouth friendly solutions - be sure to share them when you do.
warmest healing wishes for all, Stephanie
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babs, Good for you for getting back on that bike! You sound like me. I seem to always find something else to do to avoid getting outside and moving. At least I move around in the house vacuuming, laundry ect. But that is not the same at all. My wrist is feeling better so am going to ask the DH to get my bike down off the garage ceiling tonight and give that a try tomorrow. Thanks for the inspiration.
Leftfoot, Hiking and walking in the emerald hills of Ireland sounds like heaven to me. And trust me, NONE of us could keep up with our kids! Just being able to go along is good enough...
kaayborg, I wish so much that you can catch a damn break. I'm hoping that as your body adjust to the Carbo maybe the allergic reaction and low counts will adjust as well. None of us ever wants to quite something that is working. Again, I am in awe that you are getting out and running. I am going outside as soon as I a done here. You ladies are all the inspiration I need!
Timothy, That is such great news. I know just a week or so ago your beloved wife was having a very rough time. I am so glad she is feeling better. I would definitely follow your intuition and "logic" as Stephanie says and gets a second opinion. I too have heard that a shunt is something you want to avoid as long as possible.
Stephanie, Thanks so much for the link! I will read it in a sec here. The dry mouth is getting better because my nasal passages are clearing on my week off of Ibrance. (The key is to blow often to clear out any gunk.....TMI) I feel like I have a constant low grade cold on this med. Also the drug itself causes dehydration, including my nasals, so I have guzzling water and ice tea (with bitters! :>) I also have a dry mouth rinse I have started using again. I am not much of a meat fan but when I do, marinating huh? I will give that a try. And yes! Watermelon has been a major part of my diet lately. Sooooo good. I am paying much more attention to nutrient dense meals as well. I have a pretty nutritious smoothie almost every morning to start off right. It reminds me to keep it going for the rest of the day. The hard part is when the DH is home on the weekends and wants steak, potatoes, ice cream, pizza ect ect. I have promised myself to use the summer to learn lots of new healthy recipes that he will like that will wean him off of all the junk, thereby a better influence on me.
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Artist, your angst on my behalf is touching. It surely would be nice to a catch a break. How about a big one for all of us? I am strangely okay about the whole thing though. Probably not so realistic but I've got this idea in my head that carbo is just going to keep me stable even if I only can get it once a month or at reduced dosage. I'm just feeling so stupidly positive. Why bother with reality or likelihoods? What happens seems to be anyone's guess. So? How was the bike ride? I'm so glad your wrist is up to it.
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kaayborg, Most days I think I'm OK with it. I definitely live in a state of "push it out of my mind" when I can for now. Appreciate today and feeling well enough. I agree wholeheartedly, why bother with the "what ifs" blah blah blah........ It only serves to ruin my day, week, mental outlook. Of course I have my moments of very DARK clouds. But I also believe anything can happen, including being a super exceptional responder, science bringing in newer meds everyday, who knows? I just had a young 30's neighbor down the street that was tragically killed yesterday while rock climbing so it just goes to show life is a total crapshoot! My bike ride was good. My wrist is still weak so we only went around the neighborhood, but it is pretty hilly and about 4 miles. It felt so good to get my lungs full of fresh air. Have to say I was huffing and puffing a bit. I need to do it several times a week! We went a saw an epic concert last night, Sting and Peter Gabriel. It was awesome! Live music is "my thing".
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Artist, I'm with you 100%. So glad you had such an awesome night!
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Hi, just learned on Wednesday I have liver mets. A few larger lesions but mostly diffuse activity per pet/ct. Liver MRI and hopefully biopsy next week. Waiting on schedule but will know for sure by noon on Monday as gemzar/carbo chemo scheduled at 3:00. Biopsy is making me nervous. Can you tell me what to expect?
A couple names I recognize Artist Of Lake Tahoe and Naturegirl from the Faslodex/Ibrance thread. I'm sorry to see you on this thread too. You're advice in the past has been so helpful.
Thanks, shelby
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Shelby, sorry for your new challenge. My liver biopsy was the easiest procedure I have had. It's fairly quick & I had no pain from that. My liver was screaming, I had innumerable mets, my liver was very swollen & hard. Taxotere has got it controlled, which is great, but it has spread to bones, spine & I think my lungs.....Oy...
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Shelby my liver biopsy was really easy. In my case they had to go through my lung due to the mets location. The what ifs were scary but it ended up being so nothing!!!!!
Artist. Yes my bike ride also made me huff and puff. It made me realize how out of shape I am. Once it's little cooler I plan to rectify that. It's just too hot and humid now
Babs
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Shelby, I'm so sorry you have had to join us. This is a great group to come to for support. I had a liver biopsy in March, and I did not think it was too difficult Hoping you have an easy time of it as well.
Hugs, Melanie
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Shelby, count me as another with an easy liver biopsy. I don't think you have much to worry about there. I'll also add that I have tolerated gem/carbo very well (though it is hard on counts) and it has worked great on my liver mets. I hope the same for you.
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Shelby, That stinks that you have to be here now.......Same with me, the biopsy wasn't bad at all. I had one moment of slight discomfort then it was over.
babs, Me too on the out of shape. My leg muscles did good but the aerobic side is lacking for sure. Went again today though and even did a few inclines that were harder on my wrist than my lungs. Felt really good after although it was pretty hot here too. Definitely have to aim for the morning before it heats up.
Holeinone, I'm sorry.....you are having a hell of a time. I hope those meds kick in and kick butt.
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Same here, my liver biopsy was easy and just sore afterwards. Good luck and keep us posted!
Alissa
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Thanks for the info on the liver biopsy. I think I might be joining y'all.....blood work too high, liver pain and just had the ultrasound this morning that showed a lot of lesions and one for sure with vascular activity. Wondering when I'll get "the call".....
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oof barbe. hang in there. as always, once they can complete the scans and biopsies and you have a treatment plan, things get easier. you know the drill. mentally, this is the hard part.
my liver biopsy was so easy that i kinda ignored the fact that i had had minor surgery and some powerful drugs to help me space out. take it easy a bit the week after. we have all kinds of stuff going on and we may not heal as fast as we used to. the only thing on the surface was a band aid covering a pin prick, but it is deep wound. take care.
wonderful to hear about everyone huffing and puffing up hills on their bikes. it's hard to get out there with everything we are dealing with, but so healing. go ladies! keep it up.
>Z<
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Last week we drained my wife's ascite's and only got 100 ml after 4 days. Tonight we drained her, and after 7 days, there was virtually no fluid. Only enough to fill the line and just a teaspoon in the bag. That's a huge change from 5L in 7 days at her peak. It's been going down fairly steadily now for over a month. I am in disbelief that the diuretics alone could account for such a drastic change, 5L going down to virtually nothing. The Doctor doesn't think her liver could have healed in that length of time, but I think its possible that it is healing. She feels so much better, has much less abdominal swelling, and now no ascites. I think this corresponds with her tumor markers falling so much. Thanks be to God.
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Timothy, Great news! Happy dance to you & your wife.....
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Timothy that's wonderful. Yes as hole in one said its happy dance time for you and your wife!
Babs
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Barbe, sorry to hear that you may have liver progression.
Just learned yesterday that my liver is within 3-4" of my pubic bone and ileac crest, when it used to be tucked up under my rib cage like a normal-sized liver.
Progression is always scary.
Good to hear from so many that liver biopsies weren't difficult for them.
In spite of 2.5+ years with liver mets, I've never had a liver biopsy, since it wouldn't have changed my treatment plan or approach.
Barbe, sending loving kindness and healing light as you wander into new and scary territory, Stephanie
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Thanks guys, I appreciate any prayers. Timothy, fab news on the ascities for your wife! I'm already on a diuretic (full pill of Hydrochlorothyazide) for high blood pressure. Most people have to break the pill in half, but I've been on a full pill for years. My abdomen is swollen like I'm pregnant and it makes me breathless....
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Yes sorry barbe to hear about the progression. But Z is right things will get easier, dare I say routine? Timothy, wonderful news! It is always so great to hear of someone struggling to catch a break. Yes Z, getting out and moving does wonders for my psych and over all wellness. After a week off of the ibrance my liver enzymes are on the way back down. So it is definitely the culprit. On the flip side my TM's rose again......Get another scan on August only two months after the last one. Here we go on the roller coaster again.
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The liver specialist is still pressing my wife to get a shunt installed. I wish I had been part of the telephone conversation, but he told her that it would reduce the damage to her liver and allow it to heal. I'm no Doctor, but from what I have read about a tips procedure, they bypass the liver to relieve portal hypertension which causes ascites and potential (esophogeal) bleeding. I haven't read anything that says it helps the liver recover. Anyone know anything about this? If that's the case and its reversible, that would speak in favor of it. We are trying to get a consultation with him, although he doesn't do the procedure, and the radiologist that does, doesn't do consults. Talk about confounding.
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Timothy, I am so happy to hear this wonderful news. I wish I had advice for you about the shunt but I've no idea about any of this. Best wishes in figuring out the consultation. So frustrating that is so difficult to obtain! I think I would want to ask about whether or not there are risks to waiting to get the shunt until it seems more necessary and weigh them against potential benefits to getting it right now.
As for me, I actually got chemo today and had no allergic reaction! That means I had a full treatment cycle for the first time in probably 3 months I'm guessing! Platelets were technically too low for treatment (require 75, I was 68), so I need to get blood work next week to make sure they don't get hit too hard. My infusion also took 4 hours with 16 steps! My total visit was from 8:15 - 3:45. Ugghhh on that for the new norm but I can't complain. It worked! I'm feeling well and hanging on to my first line of treatment, nearing a year and hopefully well beyond!
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I know this isn't the alternative medicine forum, but I've read that papaya leaf extract boosts platelet count in some people, and does it rather quickly. I would be loath to use it combined with any treatment for fear of some interaction. But using it while off chemo might be something to at least ask about. Good to hear your treatment went session went well. There are so many obstacles and issues dealing with these treatments. I sure don't need to tell you that as you already know, but it weighs heavily.
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kaayborg, That's great! I guess your body is adjusting...here is to WELL beyond! Gosh, 7 1/2 hours! Did you bring a good book and snacks?
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Timothy, I just read about that a few nights ago as I was feeling desperate about it all. I never know what to think of alternative therapies. So wish we knew more about them. Your mentioning it again does make me think I should at least ask my onc about it.
Artist, it wasn't too bad...slept, read a little, played games with the girls but I'm gonna be sucking up the sick days fast once school is in. I was taking half days before. We'll figure something out I suppose. Can't not work or go into unpaid status and lose insurance. Hubby has been the stay at home parent and we're working on finding career for him but it'll take time. Eek!
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Hi Timothy,
I'm with you on the reluctance to undergo another and possibly inappropriate (or inappropriately timed) medical intervention.
We're very supportive here, but how about getting a knowledgable medical second opinion? Try finding someone from a different medical specialty - a hepatologist, gastroenterologist or palliative care specialist - someone who can step back and look at the big picture and also knows how to have a healthy liver.
I continue to coddle my liver, though it's quite large and ascites continue at a liter a day. The drain line is clogging and requires daily flushes, before giving up the fluid now. Never a dull moment!
Timothy, wishing you both many healthy and peaceful moments!
warmest healing regards, Stephanie
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen, Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday particularly for the skull Mets.
Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .Really wanted Xeloda now. But...
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone.
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Hi Momallthetime,
Sending warm, healing hugs for Dani and you.
I too am experiencing liver progression, but am at a different stage of life than Dani and finally made it to hospice after beginning my breast cancer journey at 34.
She's still got much to live for and I know that everyone is working hard to ensure her life on earth.
Back in June, Dani's team looked for a BRCA somatic mutation in her tumors to see if Dani's cancer might respond to PARP inhibitors.
I explained in my response then that a germline genetic mutation is different than a somatic mutation of tumor cells. The former affects her offspring and maybe her other blood relations. A somatic mutation is about the tumor and possible treatment options.
https://community.breastcancer.org/forum/8/topics/...
It sounds like a germline genetic test for TP53 is being suggested in the off-chance of explaining Dani's early and aggressive MBC. The test results won't provide any targeted treatment options (they aren't there for TP53 mutations), but if she has a TP53 germline genetic mutation, other blood-related family members may also be at risk for Li-Fraumeni syndrome.
Hopefully the geneticist is also a genetic counselor and can sit your family down and explain the meaning of the test before doing it!
I hope too that s/he has a full family medical tree of Dani's blood family and can counsel you first.
This is a time consuming process, but a positive germline genetic mutation changes the lives of all of the entire blood family, not only the patient.
Personally, I think it's irresponsible to offer germline genetic testing to patients without complete counseling that includes conversation, a blood family medical tree and exploration of related topics. Germline testing can be a wild shot in the dark that may may injure unsuspecting and innocent others.
This might be on your list of things to attend to, but probably isn't at the top of the list for keeping Dani alive, well and receiving the best cancer treatments.
Healing wishes for you, Mom, as you navigate with a migraine.
warmly, Stephanie
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Timothy, maybe they want to put the stent in while she is not in a crisis? Maybe it's safer to do when the organ is not compromised so much by inflammation and disease. You are in my thoughts....
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I wanted to introduce myself as I've been lurking in this thread since I was diagnosed a few weeks ago. I just starting this journey, but have found comfort reading your discussions. It's empowering to see others living their lives, dealing with the issues as they come along,and to know I'll be strong enough to do the same.
My diagnosis was a bit of a fluke, before I recognized any symptoms. But now that I know, I can see the first signs that my liver is under stress. A little asymmetrical puffiness on my right side, a side ache anytime I over exert myself, and a sensitivity to uncomfortable clothing around my waist. Really not much. My onc commented that we'll wait and see, hoping that I'll have a positive response to treatment that will ease back the symptoms I'm experiencing.
I am curious if there are lifestyle/nutritional changes that I might look at specific to supporting my liver?
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kaayborg, I thought I had worries about working! I work for a school too and carry our most excellent benefits. When I can't work anymore I will lose a decent salary and benefits for both my girls and Dh. We have definitely upped our lifestyle as the money went up. So now we are trying to slowly downsize and prepare but on top of everything else it's slow going. I am sooooo glad I've built up my sick days all these years. But the office running without me would get ugly very fast so I am not sure how this is all going to shake out. However, my Dh is working so WOW, I don't know how you do it! That is quite a load for someone who is dealing with all of this too. How many kids do you have? Are you a teacher? I hope you don't get many SE's from the carbo and are able to just just sail along this school year. Best wishes for hubby's career hunt.
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Longterm so sorry for the progression. It must really bother you. Is there something they could help you to alleviate that feeling? Who helps you with the drainage? Re: Dani, Thank you so much for the reminder, I reread it. Love your input. The truth is it was a Genetic Counselor, and she did explain but the more you read the more you understand. I tell you the truth, it's scary that's for sure. As you said, there is no target therapy for the P53 but if they even have a small suspicion the way we are looking at it, it's only responsible to go for it. Unhappily. But not to do it, then she and I, we are gonna be wondering the whole time. Dani has 2 sisters, and 2 little girls, I don't think she has much of a choice. When do we say no? And they also wanna check for PALB2 that was not around a few yrs back when she was checked for BRCA1/2.
Artist with the enzymes going down, is it worth it to continue on Ibrance? Is it not irritating your liver? If Ibrance is the culprit, what's the plan?
Barbe so sorry for the way you are feeling now. Are you having the ascites sucked out? What's the plan?
Timothy I don't know the details of how you deal with the docs, but if you are doing the research and you think you would know to speak with docs more directly, would be a good idea for them to have your number and speak to you? Would that work for your wife? It all depends on how you guys like to tread on these issues. I know docs don't like to spk twice to family, that's why I am mentioning this. Also, from experience, do you have a Health Proxy, a Power of Attorney? Both. Even if you are a husband, and officially next of kin, things could get very messy very fast when you get underpaid overworked professionals with ego issues. I just read Hospital Stay Handbook, by Jari Holland Buck. It's all there. She did everything for her hubby, was with him 24hrs at the Hospital, but you get one wacko and she was almost barred from being in his room.
Kayyborg so glad for you that you had less SE. How many kids do you have? It's beyond hard to have to worry about Money. This is beyond difficult. I wish the best of luck to resolve this asap.
Shelby wish you the best. They didn't decide what they gonna do for the liver for Dani, my daughter, maybe after scans tom and after Rads Onco visit on Friday. Onco said they might not know much by doing biopsy that would change treatment now. So she would be on Navelbine and Herceptin. But so many here are on Xeloda. She was on it, 2 yrs ago on it's own. But maybe Onco wants to keep it for reserve. I mentioned it, but she prefers this tx now.
Sherri sorry you have to join, but this is a wonderful set of the best people, so we will all help you through.
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Momall. Sounds like the new once was very thorough !!! Glad to hear that!!! Rushing to meet someone now but just wanted to see what happened with Dani
Bab
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Arstist, I am a teacher...first and second graders. Next year is a first grade year so it'll be back to the training basics but the reward is I keep them for another year as second graders and things fall into place quickly and smoothly. Unfortunately, the way it works with our contract is that maternity leave comes out of sick leave so having had 3 children in the last 12 years, I don't have as many sick days banked as I would if I were a man (only this illness illuminated this inequity...had no complaints about it before). They're not exhausted but one year of treatment uses more than the 15 days I earn in a year, so once my surplus is gone, I'll be running short. I can use up to 45 donated days as well so hopefully it will all pan out. I am careful to use as sparingly as possible. I'd prefer to keep the half days. My daughters are 12, 10 and 7. Pretty adorable if I do say so myself!
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Kaayborg, your girls are precious!!! Thank you for sharing the pic!
Melanie
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Kaayborg- your girls are just adorable! Cherish every minute you have with them!!!!
Babs
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A BEAUTIFUL family, sweetie!!! They must really give you joy.
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Sherri - welcome to our group. I have to check BCO every day just to hear to people chatter on about how they are dealing with the cancer, the treatments, the side effects and the fear and get strength from it. My life is otherwise pretty normal and cancer free. In fact, very few people except my husband and kids know i have cancer. It's been very helpful to deal with my cancer here and keep it out of the rest of my life.
Anti-cancer A New Way of Life is my choice for diet and lifestyle changes that will improve my odds. Many people like Radical Remission which I believe goes beyond diet and lifestyle but I got what I needed from David Servan-Schreiber and this forum. Most ladies here are trying to live Radical Remission and the discussion here feels more grounded in (a very tough) reality.
I see you are triple negative. The TN ladies may have caught some breaks in terms of potential treatment options, finally. Lots of hope. Check out the triple negative thread and ask your oncs about clinical trials. There is a lot of change in TNBC treatment coming along which means that getting second opinions and seeing doctors who specialize in TNBC will be very important for you. Doctors vary in opinion particularly as things are changing.
>Z<
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Anyone out there dealing with ascites? I have to have 2+ liters pumped out or I feel full to bursting. Any tips? Herbs, abdominal binders, exercises, sleep positions? I go back in for a second Doxil next week.
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HI Dancing Veggie,
Let's see, practical tips for living well with ascites.
Mine began in January 2015 and by August were bad enough to have a drain line inserted into my belly.
An average of 1 liter is removed each day, but I still get the swelling, fullness, discomfort, reflux, reduced appetite that trouble many with ascites.
Here are a few practical tips:
* No tight clothing or binders! Wear drawstring hip hugger pants or elastic waist pants and skirts. That liter weighs 2.2# and I can gain and lose an inch of waistline daily. Now is not the time for vanity and a small waistline! Wear tops that skim your belly, rather than bind it.
* Eat small meals and wait at least 4 hours after eating before bedtime. Avoid foods that lead to reflux - oranges, coffee, tea, spicy food.
* Drink plenty of fluids, especially around drain times. Replenish with electrolytes like coconut water & broth.
* Good mouth care - the dry mouth after many months of draining is terrible - so I drink water frequently, rinse with glycerine and marshmallow tea. Some people swear by biotene, but it didn't work for me. sometimes holding a bit of coconut oil in my mouth helps. I avoid salty food, most food, after 4 PM.
* Sleep on back or side, not belly.
* I hold my belly with my hands and rub gently in the direction my colon runs - lower left up to liver area, across upper belly to upper right and then down right side.
* Exercises like gentle walking, yoga and stretching help. Anything that compresses the belly like the yoga poses of forward bends and child's pose don't help, nor does vigorous exercise that jostles the belly.
* Stand up slowly after draining and watch your blood pressure - mine drops very low, while heart rate races. Don't fall down.
Dancing Veggie, hope you find something useful in here. Please take what you like and leave the rest. Try it out for yourself, don't take my word on it.
May Doxil be your friend, ally and healing savior from ascites. Ascites suck vital energy, as does draining.
Fingers crossed you find something that stops that sucker!
warmest healing wishes, Stephanie
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Oh my gosh kaayborg, they are pretty adorable all right! You have been triple blessed for sure! Funny, looking at your cute little picture just made me think of you as a Primary grade teacher. Again, I do not know how you do it. I watch the teachers at my school every day and think that the job never ends. Not at night when you go home and grade papers, go to meetings, on and on...and still be an awesome Mom to 3 girls. My hat is off to you! I am very careful not to use my sick days either. I also have some in the sick bank but we all know how quickly they can be sucked up. Soem days I think I would love to go out on SSDI so I can do all the things I never have time for. But deep down I know we can't afford it and I would really miss all the interaction i get at my job. Keeps my mind off of all of this...so 3 more weeks and back I go! Longterm, All of your experience and advice is sooooo invaluable, I can't say it enough. You too Z. I am ordering that book today. The one I was reading last night was too negative and focused on "the grim statistics". Really dragged me down. I wish I had kept my diagnosis to myself more......
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Guys thank you so much for your support.
I must comment on your picture Kaayborg, oh my gosh, they are just so precious!! Love it! Zar also has little ones, and I see with Dani it's just so hard! How much can you ask of someone? You doing great.
I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person.I can't even…. Anyway she told her to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) anyway to make sure about the therapy. Off she went on Friday.
Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)
Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time. And uptake on the right Hilum. Are we talking lung here?? And nothing much on the node that doc felt! Something there but they are not sure what.
Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.
They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.
I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!
I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.
AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!
Everyone thank you.
P.S – Warning, I am posting the same info in the threads I belong to, so be prepared for doubles. -
Momall. Wow! And two incidents with the cab!!!! Just too much but at least that made you laugh. I'm sending you a pm now
Babs
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Momallthetime, no words of wisdom or advice to share, just gentle hugs during this challenging time.
healing regards, Stephanie
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Drained Bev's ascites drain just before a visit to the liver specialist. Once again, only a tablespoon of fluid. Her stomach is looking so much flatter as well. Liver specialist is no longer pushing for the liver shunt to be installed. Fantastic! God is answering our prayers. Doc says we will look at the MRI after 3 months on the blood thinners and see if it shows improvement. He doesn't think any kid of testing right now is warranted as its too soon to show improvement. I take that as meaning too soon to visualize or discern an improvement. The changes would no doubt be subtle.
Momallthetime, you are in my prayers.
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Thank you beyond words for everyone's caring. It's so humbling.
The best way to know what's going on in the liver would it be through MRI? Also Onco only wants to treat it systemically, as with Navelbine and Herceptin. She does not think biopsy is necessary, how true is that? I would love to hear an opinion from you guys here.
TIA
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That's great Timothy, a respite! I also wonder about an MRI for liver mets. Does it show more subtle things than a PET?
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So my pain hasn't been from my liver, the raised numbers could be from a virus or a reaction to the fact that the tumour in my kidney has doubled in size. On to other scans and tests. Thank you for allowing me to walk with you for a short time. You are all in my prayers.
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Wowow Barbe, good luck. Are they doing it soon? Did they not see it in BT?
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What is BT? I had a bone scan yesterday (they move fast here when you're stage IV) as something had shown up on the last one on my right rib. What we thought was liver could be the uptake area that showed up in January. I see my Urologist in August for an update on that pesky little kidney tumour.
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My liver mets are stable, thank goodness, but have a 3" tumor on my iliac bone. Ct scan report says the bone is destroyed. Not sure what that means. Will have to wait and talk to my oncologist. Started radiation on that three days ago. The tumor is causing a lot of pain. My oncologist decided to stop my chemo and pit me on arimidex, last time I was on it was 8 years ago. Supposedly after a long break from Ai's they can be effective again. It's worth a try. I'm hoping it works. I can use a break from chemo. Keeping all liver mets tears in my prayers. Hope we all get good news from scans and relief from pain
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Me too GatorGal! I'm sorry you have this new issue to deal with. Is that tumor new since your last scans as 3" seems large for such a short time span.... sorry you are feeling so much pain with this. I think you will feel relief fairly soon from the rads. I've heard too than returning to the AI's is very feasible. Many women on here have done so. Enjoy your break from chemo. I'm praying it works too and you get a break. You are in my prayers too!
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Barbe i meant blood test.
Today's visit with Onco was "heavy". Onco and I were having "the convo", hmm, yeah like I am not ready to tell my little girl. We have to think about it. She is not happy with all the lesions in the liver, it's specs all over. IN 4 freaking weeks. Just exploded from 2 discreet ones! She hopes the Navelbine/Herceptin takes hold. All the bones showed progression. Brain MRI was not much better. So at this point we can only pray that TX should take hold. Is Rads advisable only when it's in a smaller area? More concise? They are not looking to radiate now.
i do wonder what's a good way foodwise to rid this "things" out of the body.
GN everyone,
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Momallthetime,
Do not give up hope. I had a liver "explosion" on aromasin/faslodex/ibrance combo. I went from mini metastasis throughout my liver that were inactive, to my left lobe described as "nearly entirely comprised of metastatic tissue" and very large, innumerable tumors on my right lobe, in a 3-month time span between scans. I had 7cm tumors where there was no evidence of disease previously. Since then, I had my first 3-month scan after switching to Xeloda and my liver mets have substantially shrunk and are inactive again (no increased metabolic uptake on a PET scan). The good news about aggressive cancer is that it generally responds very well and very quickly to treatment, particularly chemo which targets fast growing cells. Quick tumor growth, quick tumor death. That has been my story since diagnosis. Hoping the new chemo regimen will get everything under control very soon.
As for scans, I have had PET/CTs and CTs. I have found the PET/CTs to be more reliable for me on liver mets because they show where the tumors are inactive or active. I haven't had an MRI on my liver.
With regard to biopsy, it is probably not necessary given that she has already been diagnosed with metastatic BC unless they are concerned that her cancer mutated into a different form (such as from ER/PR or HER2 positive to negative or vice versa). In that case, it is important to know to tailor the treatment accordingly. There are other reasons to get a biopsy but it is not always indicated. I haven't had my liver mets or bone mets biopsied and have had mets in both areas since mets diagnosis.
There are targeted treatments for liver mets (radio frequency ablation, liver resection, radiation, etc.), which are usually only indicated if someone has a few lesions but not for more wide-spread liver involvement. I don't hear of radiation being commonly used on the liver, though.
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Timothy, YEEHA for the good news.
Gatorgal, sorry for your progression. Same story here, liver looks stable. Bone mets in every vertebrae, some ribs. The PET scan reported scary stuff in my lungs. My MO blew that off, said it was the chemo. She seems to not want to disclose all the bad stuff to me. Hang in there.
Momallthetime, my inummeble liver mets responded very well with Taxatere. I had 6 infusions, 3 weeks apart. My liver was swollen, hard & painful. Hope your Dani can handle the treatment, and you all receive better news soon. I always tell people, glad it's me, and not one of my adult kids.
Hello to all, Barbe, happy for you. See you on other threads, or hang with us.
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Momallthetime, I echo JFL and Holeinone. Controlled inummerable liver mets here as well.
Timothy, so incredibly excited to hear the fantastic news!
GatorGal, prayers for controlled pain and soon. Liking the idea that past tx can be effective again. Hope the chemo break treats you well.
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JFL thank you so much for giving me the details it's important. I asked for Xeloda she does not wanna give it to her now. I asked if she could get something more aggressive than Navelbine, they told me it's aggressive but it's well tolerated. I think they will do another scan in 4 or wks, if it's not good I'll ask for a taxol or something.
She did have a biopsy 1 1/2 ago when it started spreading in the bones like a bonfire, it showed that her status did change to HER2+ everyone was so excited bcs they thought she would be helped with all the new targeted HER2+ tx, but it failed her. Constant progression. She did not have a break for yrs. She's now 32. And the last 2 mos it went to the liver. She did get in the skull for 2 yrs already. had Gamma done and radiation to the skull. And now it's growing very much there again.
I was hoping for ablation. We got messed up with the prior Onco dragging his feet also. I think. Now...she does not know yet. And i will have to talk to her about doing Rads to the frontal part of the skull, which will leave her with a large bald patch and no hair regrowth. She thought she does not have to do it, but it's not looking good. And so it goes...
But now doc does not see a reason for biopsy, I was also thinking maybe there is a new mutation. They don't think so. they think it's the process from this monster. But, I may still ask again, bcs what if now she is Triple Negative? We'll see.
She was trying to "go there" with the convo, I spoke a bit about it, but it's surreal.
Holeinone I know what you mean, thanks. I asked God to make an exchange. I am just in my mid 50's but I did live more, and she has these little girls, they are so attached to her, I can't even....
Gatorgal hope you feel better soon.
Guys, thank you soooo much, it's so good to come here, and be able to discuss these things with you, you get it. And learn from you so much.
Warm hugs,
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Momatt so sorry for all you and Dani are going through. As moms we always want to take the bad for us to spare our children. I know how hard this is for you but hopefully the new txt will kick Danis mets to the curb! When does Dani start?
Timothy that's wonderful!!!
Gator gal hoping the break from chemo and back onto ai s gives you great results
Babs
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HI momallthetime,
My heart goes out to Dani and you!
What a scary time for everyone and each of you is approaching it from your own directions.
I began this breast cancer journey at age 34 and quickly progressed. Now that I've been at it for 25 years - I'm old enough to be a mother to the young woman I was in 1991.
What a dear one she was, so invested in living; so sure there were paths to cure that I just needed to find; certain that even thinking of death would cause it.
Much has happened and while I've tenderness for the younger me, I see things on differently now.
Mom, it sounds like Dani's health care givers are on the ball, considering all the options, willing to weed some out, wanting to broaden the conversation to include the unwanted "what-if nothing else works?" topic.
Can you trust them to know the cancer and treatment territories?
Can you lean into their expertise?
Can you expand your perspective to include all possibilities, so you can then focus on your best-case scenario?
You've often written that you've felt you've had to carry the hard news for Dani. That makes sense. You are her mom! You've been watching out for her her whole life long! And her cancer journey is arduous, unrelenting, heart-rending.
Surely, you can look at the possible dangers ahead and consider strategies with her treatment team, even if you don't want the possible outcome?
Please take what you like and leave the rest.
I'm really speaking to my younger self - asking her to open her eyes, mind and heart to all possibilities, so she could then focus on her best case scenario.
Sending much love for you and everyone, Stephanie
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Mom, I also just wanted to say that Dani is lucky to have you. I have been dealing with BC for a decade, since I was 30, and my Mom couldn't tell you much detail about my diagnosis, treatments and prognosis. My Mom recently asked if it was good that the cancer was in my liver because the liver rids the body of toxins (and in her reasoning, cancer). She was thinking my body was sweeping all the cancer to my liver for removal. She just doesn't get how cancer works.
It makes me sad sometimes. She is a wonderful, loving Mom but just doesn't have that interest in understanding the situation in detail. It is hard for me to understand because if I were a parent with a child with cancer, I try to be more like you - trying to understand everything and do everything I can to help.
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ShetlandPony:
Jul 9, 2016 09:33PM ShetlandPony wrote:
"Retz, for what target gene alteration was Ibrance noted on your Foundation One report?"
I finally printed out some of the report so I could answer your ?
Genomic Alterations Detected: CCND1 amplification - equivocal
FDA approved therapies: Palbociclib
Gene and Alteration: CCND1 encodes cyclin D1, a binding partner of the kinases CDK4 and CDK6 that
regulate Rb activity and cell cycle progression. Amplification of CCND1 may lead to excessive
proliferation 39,40. CCND1 amplification has been positively correlated with overexpression of cyclin D141.
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As I approach another scan in two weeks it is very comforting to here that even with progression there is still hope for effective Tx for liver mets. Thanks JFL, Hole and kaayborg. I need reminding so often. Holeinone, I have to agree I am very glad it is not one of my daughters at least. I coould not handle seeing a younger daughter have to deal with this. Momallthetime, the extra burden of that has to be almost unbearable. I'm so sorry for all you are going through.
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artist, I had my first Flasodex shots 12 days ago. I have extreme edema in my feet, ankles, calfs & thighs. If I stay in bed all day, and keep them elevated, not as bad. Can't stay in bed all day, every day. I see my MO tomorrow. She might be grumpy with me for not coming in sooner. I just keep thinking it would go away on its own. Any suggestions ? Have you experienced the with Flasodex?
Kayborg, beautiful photo of your 3 DD. I love the braids. What fun & good ages right now
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Hi everyone,
I haven't posted for awhile, as I've been trying to live a bit and stay distracted while I'm on this easy Tamoxifen protocol. After several months of Xeloda and a relatively stable scan, my onc took me off the chemo and put me on Tamoxifen, as I'd never tried, even at early stage. I've been a bit nervous these months, partly because Tamox is so easy that it's hard to believe it would do anything. After my successful three years on FAslodex, and my several months of Xeloda, I feel like I'm taking a sugar pill. Not only have my peeling hands and feet completely healed, I have great energy!
So I went into my scan last week figuring I'd have progression, as my tumor markers are going up, but hoping I could delay another round of chemo until after my daughter's wedding in September. Just got my results from the Lab, as I always do before I see the doc, and I'm kind of happy! The largest liver lesion has reduced in size by 4-5 mm, and my bones in the area are stable. There are a couple of other smaller liver lesions- less than a cm, that have increased slightly in size. But nothing seems wildly out of control. So, while not perfect, it seems ok to me, for now.
I think when I see the doc tomorrow he will let me stay on the Tamoxifen for another three months, at least. I'd be surprised if he wants me back on chemo yet, because he's big into quality of life and nothing seems out of control. So, Yay for me! I don't think I'll have to go to my daughter's wedding in the middle of chemo! At least that's what I'm counting on. He may be more concerned about my markers than I am, but we'll see. I'll share what he says tomorrow.
So glad to hear so many here are doing well.
Hugs to all.
Sandilee
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Great news, Sandilee! So glad you've been feeling well and are seeing good results. Enjoy your daughter's wedding!
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Holeinone, the Faslodex does the same to me. Swelling from the thighs down, as well as my abdomen. My onc gave me a script for a diuretic to take after each injection. I haven't tried it yet.My next injection is Friday.
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Mel26,
Thank-you for the response. I wondered about diuretics. Last time my feet swelled, she had me get an ultra sound, looking for blood clots.
Should of got in there a week ago, tired of all the appts.
Sandilee, great news ! I will be lots more fun, if you are not being poisioned at the same time
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Holeinone, I never did get any of those symptoms on Faslodex. the worst thing I ever got was that my sciatica nerve got hit once and my whole side from hip to ankle had a painful twinging nerve. I could hardly walk. Otherwise that med was a walk in the park for me. I was sorry to have to switch. What you are experiencing sounds miserable. I hope diuretics like Mel says, does the trick. I know what you mean about your Onc getting grumpy. Sometimes it seems damned if you do, damned if you don't.....LOL! And we all get sooooo tired of appointments.
Sandilee, that is great news! Seeing the bigger tumors shrink is always good news. Very exciting about your daughter's wedding! I long for that day as well as a few grandkids. I hope it is a beautiful day for all!
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hi everyone. Last month zarovka created a new thread in the stage 4 forums titled how many are we 2016. Z is attempting to count the number of metsters posting or lurking on our stage 4 threads. We are both thinking that possibly folks have missed that thread because they are only responding to threads marked as their favorites. If you don't mind bumping over to that thread if you have not already done so it would be much appreciated.
Thank you so very much, Mary Anne
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Hi ladies,
I haven't been on here in a while, but I quickly failed Xeloda after 3 cycles, I showed progression in my liver and lungs (a lot) and now I started Gemzar/Carboplatin. I go for a second opinion tomorrow and also Sloan Kettering September 1st. I do home the Gemzar/Carboplatin will slow down this cancer, right now not really sure. Anyone have any good stories about this chemo? Also hoping to get into a clinical trial next if able at MSKCC- maybe immunotherapy? I've done Foundation One testing already. Oh- question- how do I get the liver biopsy slides to Memorial Sloan Kettering? They asked for them and I haven't a clue how to get them there from where my biopsy was done (my local hospital). Thanks!!
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Hi cjanet, I knew I hadn't seen your name in awhile. I'm so sorry to hear about your rapid progresssion and that the Xeloda failed you. Such a stressful time I know. I'm afraid I haven't had experience with these drugs yet but just wanted to lend my support and say I'm thinking about you. I'm saying a prayer that the next round Carbo/Gem is the perfect combo for you and it kicks this cancers butt. Hang in there and please keep checking in so we know how you are doing....hugs
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Hi cjJanet,
Sorry to hear about your disease progression and that Xeloda failed you (you didn't fail it!).
Let's hope MSKCC has some life-saving and life-enhancing treatments to offer you.
re. requesting medical records. Call your local hospital and ask for the records department. Ask them their procedure for releasing records - is it directly to you, the patient, or to MSKCC? If the former, there may be a hefty cost (think $1+ per page), if to another institution, usually no fee to the patient.
There may be forms to sign in-person or via faxed form.
And you may need to hand carry the records to MSKCC.
Another option is to talk with the nurse-navigator or administrative assistant at MSKCC. They may need you to sign a different form so they can request your records from your local hospital & practitioners. It would be great if they could do the work and save you time and maybe money too.
And it would no doubt be helpful for everyone if you have institution and department names, contact persons' names, phone and fax numbers, so you can get the right folks connected with the right information.
Some of the smaller institutions might not be "in the system" for ordering records.
Remember, patients come from around the world to consult world-class experts - they often come bearing stacks of medical records, x-ray exams, imaging CDs and briefcases full of briefing materials.
It's good you're gathering these now. You don't want to waste your appointment time due to incomplete records. And, hopefully, MSKCC second opinion consults begin before you arrive - that the doctors review your records before your physical exam.
And I hope someone else chimes in, as there seems to be great variation for releasing and requesting medical records.
healing regards, Stephanie
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Great news sandilee! Overall health and quality of life improves outcomes.
I sometimes feel reading this thread that the women here are too tough and too ready to slog it through terrible side effects. Serious side effects means ... serious side effects and not that a drug is working.
>Z<
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CJanet, I am sorry to hear about Xeloda. I hope your new combo stabilizes your cancer progression. I had my biopsy sample from my original mastectomy sent across the country for a second opinion. I contacted my cancer center and they were able to send it for me and with no hassle for me. I believe I just had to sign a request for the records to be sent. Like Stephanie mentioned, I believe I was referred to the records department to handle the transfer.
Sandilee, glad to hear Tamoxifen is working! Do you think you will ever take Xeloda again down the road? (I recall it was working for you but you just had terrible side effects with HFS. I haven't gone back to look at previous pages so if you already posted about this, I missed it.) Although I took Tamoxifen for 4.5 years, I plan to request it again at some point after I have exhausted other hormone therapies. I think there is a test to determine how well one metabolizes Tamoxifen related to the CYP2D6 enzyme.
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cjanet, i am so sorry for your progression , i haven't seen you post in a while. I failed xeloda too and very rapidly. I also did carbo gemzar ( before my status changed to her2+) carbo+gemzar is a good combination i got 20% redcution on my tumors , i did not progress during treatment but i did progress after three months . So if you are doing it now until you check with slaon keattering it may be a good option.
As for the biopsy slides. I simply requested the slides from the hospital where i made them plus all my records , they were given to me and i used them in two dofferent places , one in my country and the other was sent to germany. Usually they are well kept . It is your property not the hospital and it is whithin your right to request them. Of course i am not in the US so i am not sure about the rules. However i am sure of one thing they are your property.
Listen also to Stephanie what she posts is usually correct.
I hope you get a good advise from SK and that your next combo is successful. Keep us informed. Hugs.
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Cjet. Sorry that Xeloda failed you. You can ask the hospital that did the biopsy to send the slides. You'll probably have to sign a release before they'll do that. Just ask them what their protocol is for that. That's what I did before I went to MSKCC Who will you be seeing at MSKCC???? I love my MO there
Babs
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hi liver metsters, I haven't been on this site for a while. My liver mets have been stable for a while, thank goodness. Wish I could say that for other mets! After complaining about a lot of pain in my left leg a scan showed a 3" tumor on my iliac bone. My oncologist has taken me off Ixempra (it was obviously not doing much if that tumor was growing so fast) and has started me on arimidex again. I have been off hormonals for 5 years and my onc is hoping they may work again after the long break. I was hoping the Ixempra was going to be the drug that got me to NED. Oh well, I've been stage IV for 8 years and am just happy to be around to try new things! Plus having a break from chemo after 5 years is not an unwelcome thing.
Have been reading this thread frequently since I have it bookmarked as a favorite. So glad to see it is staying active. Always getting good advice here and of course I love the support you all give to each other. Sandilee, great news. So glad you will be able to enjoy your daughter's wedding.
Xeloda was one of those that failed me as well. I always have such high hopes but we are so fortunate that it seems they always come up with something else to try! Cjanet, Best wishes on getting into a trial!!
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Nice to see you Gator! I'm so glad to hear you remain stable but sorry the Iexmpra failed. I have heard that many Oncs believe that you can return to the AI's which is great. I hope the Arimidex get you to that elusive NED. 8 years and going strong is great. I think your attitude must have something to do with that. Here's to many, many more years and new meds! Scans for me on Tuesday and already starting to feel the nerves.....I will get the results the day before I return to work. Hope i don't have to call in "sick" the first day!
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Artist, will be thinking of you Tuesday and looking for your results! Hope, like you, there will be no need to call in sick your first day back at work! My next scan is sept. 1 so way too soon to worry
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Artist. Sending you positive mojo for Tuesday. Hope all is stable or better for you🙏
Gator- wow being stage IV for 8 years is anazing
Babs
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Hi ladies, sending good vibes your way. Gosh, 5 months in this liver mets rollercoaster. Your stories inject me with hope and motivation.
Last week's scan shows improvement with the navelbine/herceptin/perjeta combo. Funny I read here about the people that read / analyze the scans, someone described them as "lazy". This time they only reported on the largest tumor and said there was also improvement for the other ones but no measurements. This helped me put things into perspective...I have metastatic disease in my liver so why fixate if 3 or 4 spots, 1 or 1.5 cm, etc.
I should be super happy, plus I'm feeling great which is a blessing, but can't help to worry and wonder. Dr said we could stop at 6th round and stay on H/P but when I asked about staying on navelbine a little longer, going for 8 rounds, Dr said that was fine too. Scary why these decisions are pretty much up to me.
Again, thank you for sharing your experiences, it's good to know we are not alone!
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Artist - hang in there. it's good you feel the worry. if you are aware of it you can let it go. let's all ask the Spirit to take Artists worry and let her focus on those kids that need her.
I don't believe there is any way around worrying given what is at stake. I tend to not feel and then pass out during the procedure from subconscious terror. Better to feel it. Best to let the Spirit worry for you. Noone better equipped to deal with it.
Thinking of you.
>Z<
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Hi everyone, I have been on the boards for a little over a year. I was diagnosis stage IV right out of the gate with bone mets, so I have spent a lot of time on the Bone Mets thread. I was recently diagnosed with progression to my liver, so I am joining you here. I have read many of your posts, but I must confess that I haven't yet read all of them. There is a lot of good information here. I admire you all and look forward to learning from you. I know many of you from other threads, too. I had to leave Arimidex behind, and I am sad about that since I had virtually no side effects. Of course, it did fail me, so i guess the lack of SEs is not significant. I am moving on to Faslodex and Ibrance. Woohoo!
Lynne
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Hi everyone, It's been a difficult transition with the knowledge of much progression for Dani. I wanna read all the posts I missed because I wanna keep up with everyone.
But I just looked at the Portal and saw that Dani lost 10lbs in about 4 weeks. She is 5'0 was always very slim, bordering 100. She is now 87lbs. She is on Navelbine and Herceptin. The last Pet/Ct showed innumerable liver mets, I sent a message to Onco calling attention to it, but did not hear back. Should I be very alarmed. She is functioning the same, I noticed a bit of the loss when I look at her. But this info was on the Portal.
Could you tell me what I could do? Thanks so much
Lynne dear, yours was on the bottom, so I saw it first, welcome here, but so sorry we are sharing this.
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So I finally got to everyone. I am mainly now on this thread, and the brain mets one. Dani is being watched for one large lesion on the skull and innumerable "others". So, I am in constant guard, that this systemic tx works, so to get that particular lesion down also.
I am really concerned for her weight loss as I wrote above.
DancingVegg so sorry, it must be really tough to have all that xtra fluid. You get rid of the ascites on your own?
Holeinone I think they are trying the mildest chemo for her bcs of QOL, there is something to it, but I am concerned that maybe she needs something stronger. As I wrote just before, loosing 10lbs in 4 wks, weighing at 87 even for a small frame, it's really scary. I wonder if they are paying attention to it. I am quite freaked out.
Holeinone, if you are the type that likes to know, then why not look at the report yourself. I know many many people, including my sweet daughter, do not wanna deal with all the ugliness. It's too much.
Sandilee cheers for good news, it gives hope to everyone else.
Gramen I think you are the only other person that I know that is on Navelbine/Herceptin. Hope it works for Dani also.
JFL that's exactly how it is with Dani. She never got a break since mets dx. Constant progression. JFL, everyone is talking about Xeloda, and she is on Navelbine.
I know what you mean about no rads, that really makes me upset. And being that when she was dx with mets, she did have a status change, and being that none of the tx work for her, I do think she could have had a status change again. Everything, from the get go, was weird about her C thing. Just getting it at 25 with no history, and the aggressive progression, just awful.
JFL so how old are your kids now? So you had to wait to have the baby and then started tx? Dani's BC was found by her, while nursing her 3mos old. Gyno refused to send her for a mamo, he said she was too young to have BC! Yep, we went on our own to Rads place, payg privately, and the rest is history. I hear this stories over and over.
JFL yeah I know what you mean. People definitely have different relationships. And some ppl just can't deal with it. Part of me still does not believe it. But I really have no choice. She is extremely close with her sisters, and hubby is great, but she can't bring herself to talk about it at all with them. She really thinks that if she does not discuss it, they won't think about it, meanwhile, 24 hrs a day, I could tell you they only think about it. They are not moving away, bcs they wanna be nearby, and they are always available to help with the kids, when I have to be with her. They designed their work and fun around her needs. Actually, she prob knows about it, but there is no talk about it. Hugs to you sweetie, I know it's tough.
Babs thanks sweetie.
Kaayborg aww thank you so much. I see your girls, and I see Dani's. They look a bit like yours, also the 10yr old is much taller then the 8 yr old. You guys make me hope. Onco said it's possible to get rid of the tumor burden she has kinda of, she put the number at 60/70% ONLY! I am the one that asked, it's possible to get rid of it, then she gave me that answer. To tell you the truth she did not look very comfortable.
Artist thx for the support. Coming to this site, has been a true support for me. Who else could understand all the nuances. Here is for the hope that innumerable mets to the liver is just another bump!
Holeinone is it not from the liver not working properly? I know it happens sometimes. If you do take diuretics, keep in mind to be well hydrated.
Cristina so sorry Xeloda did not work. But great that you have this appointment. Who are you seeing over there?
Cristina I have to add if you are still looking for the slides, you could reach the Pathology Dept. and they usually send it directly to the other institution. You have to sign a paper releasing it, and they communicate directly with the other place. What I did, was I went personally to take it, and took responsibility for it, and took it to the other place, but you need to be able to travel back and forth, and it may be difficult for you. The same with the reports, if you sign a release hey send it electronically in no time to the other place. That was my experience. Good luck for you!
Hugs to all of you
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Hi Mom,
What a really difficult spell this is for all of you. How hard to be waiting for good news and keep getting bad news of ineffective treatments and cancer progression.
Like else everyone here, I really hope Dani wins the treatment lottery and gets one that gets her into remission or at least stable for a long time.
I can't address her treatment choices or personal medical situation (I'm not a medical professional, nor have any of us met her, but through you), yet I wonder if her weight loss is due to unwanted treatment effects. So many people lose their appetites, experience taste changes, suffer N&V (nausea & vomiting), get mouth sores, etc.. Cancer treatments can make it hard to eat and easy to lose weight.
It's worth talking about with the oncologist.
Yet, weight loss in advanced cancer can be caused by the disease itself - cachexia, anorexia, and liver failure contribute.
Weight and muscle loss is part of the advanced cancer profile. It's thought that cancer changes the body's metabolism to create what's called cachexia. Sometimes it's paired with anorexia (loss of appetite - not anorexia nervosa which is a psycho-physical syndrome). Sometimes it just happens, no matter how much or what quality of food you eat.
I have many liver mets and my liver has swollen to take over half my belly. In spite of being big around the middle, the rest of my body is becoming skin and bones, the "cancer look", due to cachexia. My body is experiencing muscle wasting and inability to process food, calories, protein, fat, etc. I'm now 100# and am 5'6" - so my BMI is less than Dani's.
Mom, I've done a LOT to keep on this much weight. Am lucky to still have an appetite, to find food appetizing and have healthy food habits. I'm constantly adjusting when, what and how much I eat. I don't eat junk food to put on weight, but I do eat frequent, small meals (even bites) of high protein and high fat food as my body desires. An extra pat of organic butter in soup, half & half instead of milk, organic full fat coconut milk, eggs, toasted pumpkin seeds, high quality organic olive oil. Organically grown and prepared everything (the liver doesn't need any extra toxins to process). Whatever I can take in.
But, here's the thing. It's not okay to force food on someone who can't eat or digest it.
With cachexia and me, no amount of food increases my weight. I'm just trying not to waste away. And I get to control what I eat and when - so I don't make myself sick to my stomach or overtax my poor liver. I know that my cachexia is a cancer-caused, whole body crisis. I am beyond the point of seeking new cancer treatments.
Dani isn't beyond hoping for treatment success. She's still willing to stay the course.
May she find treatment that resolves the causes of her weight loss. May she find nourishing, replenishing food pleasurable. May her body prevail and process food again.
Sending warm hugs for all of you. It sounds like many of Dani's loved ones are being scared alone and that's one of the scariest places to be.
May love melt fear, Stephanie
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Mom, Thank you for the welcome even though you know how much I wish I had no reason to be here. I am sorry to hear that Dani is still not responding to treatment as quickly or as well as we had hoped. As you know, I worry about you as much as I worry about Dani. She is so lucky to have you advocating for her. I just fear that you often do not take the time to take care of yourself. I wish I had an answer about the weight loss, but I do not. I wish I could wave a magic wand and cure all of us, but of course, I cannot. I will pray for you and Dani and also for the rest of your family.
(((Hugs)))
Lynne
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Momall- I would definitely talk to Dani's MO. Maybe Dani can take some supplements? Maybe even ensure. There are healthy foods that have lots of good fat-avocados, almonds,cashews, nut butter ,walnuts, seeds, whole eggs etc. How is she tolerating her treatment? Is she nauseous and that's why she's lost weight? See what her MO says.
Sending you hugs,
Babs
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Lynne I know. you have been through so much. You know really, I should be a skinny pickle. All jokes aside. Some ppl when they go through lack of sleep, lack o appetite, loose some weight, me nada! All for naught. just gotta laugh sometimes. What's your next step, scans treatment changes? How is your hubby? How is he taking this? Helping you out?
Stephanie, thank you so much for your quick and good response. I tell you, she has not had much of an appetite for a long while now, she eats when she wants. But she is scared of eating sugar and white flour this last year, so she is more limited. And she does not like wheat. She tried that. She eats infrequently, only when she is hungry. If I say something about that, she gets very upset. To be perfectly honest, part of it has to do that she does not want to see herself "as sickly" so she does not want to entertain a real way to combat this. your recipes of foods seem to make a lot of sense to me, but she rebels. I could ask for doc to approach her next week and suggest a nutritionist next week. But they cannot use words as "in your case" she will ram them down!
am afraid it's cachexia because she had this lack of food delight for awhile now, and only now she had this drastic weight change.
Babs, she is not nauseous. Well I sent an email to MO, no answer! I am gonna call tomorrow. The foods sound just right, I gotta get it across to her. Thanks.
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Lynne, I am so sorry you have to join us here but nice to see you! Really read up on the Faslodex thread for tips on the shots. They weren't so bad for me at all.
Thanks gatorgal! If the news is bad I hope I am over the meltdown by the next day. I am having my first meeting with my new principal that day and already hate to spring the news on her that her secretary has cancer...
Thanks Z, I think the Spirit is working as so far I am doing OK. The worst part for me is the next day, waiting in the room for results and when she walks in, is she smiling or looking morose? I HATE that part beyond belief. Then if it is bad news the tears come from both me and DH. But I am trying to hang tough and remain positive even if it is progression...
gramen, that is good news! You'll take it right?! I agree that is is very disconcerting to be the one in the driver's seat regarding such a complicated disease. I definitely wish there were more definitive answers.
Thanks babs!
Hang in there Mom. You are certainly traveling a tough road. I hope the meds start kicking in too and that maybe her body will adjust to everyting and get her appetite back. Most of my family including my sisters would rather skirt the topic as well and keep things light. I am glad i have this site to "talk" about things for sure!
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Mom, someone has probably already recommended this but when I started losing weight, due to liver pushing against other organs, I started drinking the high calorie, high protein ensures, two a day, which was 700 calories. I also made a smoothie for breakfast with an ensure and added fruit and ice cream. Had little puddings several times a day. Oncologist prescribed megace which increased my appetite. I went from 110 to 124 in about 4 weeks. I was in a panic, as it sounds you are, about the weight loss and just tried to eat little things all day long. As Stephanie said, I was worried about wasting away, and I'm so thankful for the turn around. My dh was constantly asking if I wanted anything and that did kind of tick me off. LOL! I know his intentions were the very best but I was doing the best I could! What a roller coaster we are on.
This site has really picked up. Wish I could address everyone but know you're all in my thoughts as we all do our best to kick this cancer to the curb
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hi all! Had to share, attended last nite the monthly meeting for my local bc support group for the first time since stage IV diagnosis...yikes. the lady sitting next to me asked me if I was cancer free, "right"?...Im a terrible liar and had to quietly tell her, no, I'm doing chemo right now, crickets....at the end of the meeting another lady comes to ask how my reconstruction surgery had gone, again, I couldn't hide my feelings, told her reconstruction is the last of thing on my mind, I'm doing treatment and stuff...yikes, her face of terror...I start making my way out, one of the group leaders approaches me, I can tell she knows, but again, yikes, that pitty look, big hug, rubbing my back... triple yikes. What a disconnect and sad thing, glad I found BCO!
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Gramen, that was quite an experience you had at the meeting last night. Many people just don't know what to say. I can only imagine what it would be like at the bc support group. I am sure many of the women there are unaware of the possibility of a recurrence or, worse yet, metastases. Until last year, I was naive about mbc. What an education I have had since then. Oh, and that pity look, ugh. We don't need that. I would not lie to people either if they asked questions although I have avoided telling many people about my diagnosis. We will always be here for you, and I promise there will be no pity looks coming your way.
Lynne
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Lynne, . I'm ready for the weekend!
Yesterday was a mentally tough day dealing with humans :-) our admin at work called and said if she could ask about "my cancer" because she's working on the health insurance renewal. She said: "you are in remission right?"and "what stage was it?" I tried my best to keep it together and said I'm not comfortable sharing details if i could talk to the insurance broker directly to see exactly what he needed. He noticed I was hesitant so promised confidentiality, so I went ahead and told him I'm living with stage IV and will be on treatment indefinitely...he said, oh, you will be in my prayers and went on to insurance options
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Wow, gramen, I didn't think that an employer had the right to ask about medical conditions unless it was related to accommodations needed for disabilities. It sounds like you handled it well. I am willing to bet he wished that he hadn't asked. I am sorry you had a bad day. At least you have the weekend coming up. Enjoy
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I keep gravitating to this thread. What a real bunch of extraordinary ladies.
Zar sweetie, what's up with your results? Any advance? You also have to beg and beg, for something that should be so common for these places.
Gatorgal thx for the info. How to convince her to have ensure? She equates it with my mom who was 95.I know it could help. I am waiting for Onco to call back and give me her view. Babs you mentioned the supplements also, so I am asking about that. Like everyone has said over here and in other threads, it's a constant waiting game. Always being courteous to the secr (the gatekeeper!), and then begging for the Queen to respond to you.
Gramen totally get you. That's why Dani does not want anyone to know. With her sibs, they are there if once in awhile she comments on her hair not really growing back, (last chemo was in 2014, and she barely has a pixie look), but otherwise she does not want pitty looks, or rubs in the back! How about just having at least a stage IV gathering? There is no point in mixing the 2 breeds! Much different concerns! Here, here for a peaceful quiet weekend.
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Momallthetime,
Wanted to share I've lost at least 15 lbs since March as well, Drs aren't concerned and I know it has to do with the stress...I'm eating less (stress/anxiety) and when I do I try to better choices...maybe Dani is up for some indulgent but healthy smoothies that won't make her feel guilty? You can sneak in there some healthy fat with yogurt/avocado/cacao/etc...
Also, you are correct, the navelbine/herceptin/perjeta combo isn't very common. Most of the studies were with taxotere/taxol...in my case it was a suggestion from a 2nd opinion consult I had at Dana Farber in Boston, Dr said he would start me with a mild chemo like taxol or even navelbine. When we came back home, the oncologist was ready to start me with taxol/herceptin/perjeta and my partner brought the navelbine (I think he was thinking about hair loss)...Dr was like oh yeah let's do that....I debated and was scared it might not be as aggressive/effective but now I'm starting to understand that quality of life, less toxicity is important as well...
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Hi Mom,
Woke up thinking of you all and realized what a terrible bind you're in. You're charged with being upbeat, positive and reassuring about Dani's situation, while also responsible for surveying current and future dangers from disease, treatment, doctors and family upset. It must be nearly impossible for you to navigate the emotional landscape, never mind the practical issues.
You say that Dani doesn't want to know more about her situation and prefers to focus on manageable details like hair loss, rather than loss of life.
I so get this and yet I do hope that at least part of her wakes up and draws her loved ones together for support.
There is always hope, though it may shift from care to quantity of life to quality of life to quality of connections with loved ones and comfort.
On the practical level, I understand Dani's avoidance of sugar and other "bad for you" foods. Ensure and Boost are commonly suggested for gaining weight, but I won't go there myself. I've tried Orgain and other natural and additive free supplemental foods and appreciated this blog post by a food writer who's since died of metastatic cancer.
Food or Vile Glop?
https://storiesbycarrol.wordpress.com/2015/09/01/food-or-vile-glop/
I suggest such simple things as reducing food odors from cooking (unless they smell good to her); having easy to eat foods available when the mood to eat strikes; serving on small (tiny) plates and bowls; frequent small bites of nutrititious foods, adding nutrient dense foods to the menu.
Mom, I removed the link to Rebecca Katz's recipes, since many would lead to weight loss, not weight gain.
Her cancer cookbooks are excellent! Dollops of yum, tricks for tasty foods, focus on translating "unhealthy choices" into healthier ones and much more can be gained by reading them.
Here are links that tell more about the books.
http://www.rebeccakatz.com/one-bite-at-a-time/
http://www.rebeccakatz.com/the-cancer-fighting-kitchen
Sending warmest healing wishes, Mom, Stephanie
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Hi Gramen,
I'm so sorry that you're being treated as an object of pity and pariah at your cancer support group. Where's the support in that?!
Unfortunately, we with metastatic cancer are the "bad news" to those with earlier stage cancer, but you'd think the facilitator would do better at creating a safe, inclusive group for all.
Of course, that means allowing the possibility of recurrence and "failure" into the group. And many can't handle that as they're struggling to get through treatment to the other end.
I've developed a calm, reassuring, humorous attitude to put others at ease with my "plight".
Funny how it is that the work is on me, but that's how the cancer culture works.
Now that I'm on hospice, I've upped that attitude - hoping to put metastatic folks at ease around dying and death.
Some of it is self protection - I don't like having pity and pariah projected on me (alliteration attack, sorry!).
But I tell you, at the end of the day, I'm happy to come to this forum to meet with others facing similar situations. And D&D is my neighborhood, even if we've very few residents.
Wishing healing for all - physical, emotional, interpersonal, psychic and spiritual healing. Sometimes the body gets remission, yet I believe the spirit can be healed, even as the body wastes away.
Just saying', Stephanie
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Stephanie you always so eloquent. And you truly nailed it. I am navigating, and do it what I Have to do, I just joke with the girls that if i just explode and "become a situation" they should be kind to me and send me to "a good place". A running joke around here. I think you would all do the same. I am telling you, she is so cute, she got speakers put in her home, she was skyping with me and her little ones, and they were rocking, I took video of it (of course!), she's got spunk. I'll tell you. She talks very openly with the sis, BUT nothing about THAT. She asks them to read a book before she reads it, bcs she says everyone is always sick with cancer and dying, she does not want any of it.
I'll reread soon everything and comment.
But I do wanna ask Gatorgal about Megace, it could make one blow up also? I know my mom needed it at the end,but it did not help her, bcs she was so sick. You think I should request it? What do you guys know about Megace? Thanks so much
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Gramen, your experience at the support group is messed up and wrong!
And why is your employer asking about your status?! That is so wrong. Do you work for a really small company, where one employee's medical condition impacts rates?
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JFL,
I have no clue if my condition will affect the company rates :-/ very small company, 23 or 25 employees at most. I tried to search online while they were questioning me yesterday and somewhere I saw something about the risk of not having some expenses covered if I don't disclose my condition so went ahead and told the insurance broker.
He said he was prescreening medical issues, that anything I told him would be confidential and only shared with the insurance underwriters without identifying me.
Sigh. I welcome any guidance/info you can provide. Before starting treatment I consulted an HR lawyer that help me with the request for accommodations so I can take off one afternoon a week to get treatment/go to appts and make up the the time on Sundays. No FMLA since less than 50 employees.
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Gramen, don't let it bother you. He will not be able to share the information you provided or he would be in violation of HIPAA regulations. The laws are in place to protect you, your job, and your privacy. I am sure you will be okay there. The bad thing about what happened is that it made you uncomfortable, and none of us want that to happen to you. Today is a new day. Just concentrate on getting stronger and enjoying your life. There are so many things in this world that are just noise that we should ignore. If we spend time worrying about what "might" happen, we sometimes miss the joy and beauty right in front of us. Relax and enjoy your weekend.
Lynne
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Mom,
My oncologist had prescribed megace a few years ago when I had no appetite. This time I asked him for it because I was losing so much weight. My port was starting to poke through my skin and had the chemo nurses worried. I take one pill twice a day. It has really helped me. I also remember reading where someone on one of the threads was given megace as a cancer fighting drug. I was planning to research that but never got around to it, it has helped my appetite a lot and I have gained about 12 pounds or so in the last month to 6 weeks. I feel a lot better. I'm also on arimidex now so feel I will put on some pounds because of that, I wish you could get Dani to drink the ensure. I was so afraid about the weight loss and looked so gaunt I thought I would waste away. Now I tend to grab an ensure when I head out in the morning and really like it, I'll see what I can find out about megace,
Support groups can be really good but I'm thinking separate groups for those with mets. Earlier stages freak out if they are reminded this could happen to them!
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I can't believe it has been a month since I posted here. I need to not be away so long again.
Stephanie, your "attitude" and desire to put stage iv people more at ease about dying and death is certainly benefiting me. I feel like I am storing up wisdom for the future, and am a bit less fearful in the present.
Gramen, I'm sorry for your experience in the "support" group. Don't even get me started. Ok, I'm already started. I have been to support groups as a person with stage 1, and as a person with stage iv/mets. I have to say I really believe we need a separate group for stage iv/metastatic. In a mixed group, I know I am their worst nightmare come true, and feel I can't share freely. And while I can understand the early stagers and help them because I have been where they are, they are not able to understand and help me very much, even if they are caring people. We have different issues. The early-stage people are mostly just trying to get through treatment, whereas we are living with cancer. I used to go to a stage iv group at a place with lots of support groups, and when the person in charge split up our group and mixed the stages, I tried to get her to see how different our needs were. Brick wall. I ended up leaving and it was a real loss to me. I went there for support and ended up with more trauma. Thank goodness I was able to join the BCO discussion boards.
Momallthetime, I'm sorry things are so hard, and I'm hoping you and Dani and your whole family can find the right things and people to help you.
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Don't really have time to respond now, but I've taken Megace in the past
Here's a bco topic/thread about Megace - my experience included:
https://community.breastcancer.org/forum/8/topics/...
warmest healing wishes, Stephanie
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Just finished reading up since being on vacation in southern Utah for the past week and a half. It was wonderful and I only thought of cancer a few moments throughout, not even every day! Sad to be back and facing reality but also so glad for the opportunity to go, bond with family and enjoy some astoundingly beautiful parts of the US, new to my eyes and soul.
Cjanet, I am so sorry to not be able to immediately respond with my good story about gem/carbo. I've been on it for over a year and while I've had some reductions, delays, had to add first Neulasta, then Neupogen for white counts and eventually dropped the gemzar altogether, it's a tx I am head over heals in love with. The extent of my liver mets had me wondering how many months I might live, not years but I saw sizable and immediate reduction (9-10 cm tumors now to roughly 2-4 cm). Now holding stable. My onc has a current patient (also TNBC) who has been on it for 3 years and counting. Hoping to follow in her footsteps though recent platelet issues do have me wondering. Platelets are why we dropped gemzar recently. So far so good, even with now having developed an allergic reaction to carboplatin. Tues is chemo again and hoping for the best. Please feel free to contact me with any questions. Gem/carbo is the one thing I know my way around pretty well.
Artist, I'll be thinking of you as you get your scan results Tuesday and as you start back to school. Sigh...so hard to say so long to summer. Thursday is my day back, though technically Friday is an unpaid room set-up day.
Yay to Gramen for stable scans!!! And to Gatorgirl for being stable 8 years. Lynne, sorry to hear about your new liver mets but so glad to have you here. This is such a great group of ladies. Momallthetime, I'm thinking of you and Dani as you find answers to the weight loss issue. Nothing more to offer there but seems you've gotten good advice.
Shetland, good to hear from you again! Stephanie, I'm never quite sure what to say in response to your posts but always feel there is something to be said. Shetland's put it perfectly. Thanks for the words, Shetland. I echo.
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hi ladies. I haven't been here in awhile. I see some interesting topics. I am looking a low stress job and bring that I have one or two treatments left I wonder when to tell a potential employer that I can't work on this Fri or that Fri and the day or two after. Do I wait until I'm offered a job? Second I see since weight issues in discussion. I was about 132# when dx, now am floating between 114 and 120. Doc not concerned days chemo will change metabolism. I'm down with that, I was able tto get a cute bikini this year and am in asize 7 jr. Tummy is flat. Crappy way to lose weight but might as well enjoy it. My bf situation stabilized and am still sweating it out in AZ. Markers have gone from 49.5 to 23 now at 17 after 2 treatments. We r now thinking maintenance drug. Hoping it is one that will not keep hair from coming back. Wishing u all well!! Hugs...
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LvinAZ,
What a great report! Sending you good vibes all the way to AZ and wishing things keep getting better.
I have no good advice for what to say to potential employers but suggest calling the living beyond breast cancer hotline (lbbc.org). I've called a few places and they had the most knowledgeable, helpful and caring volunteers.
I know what you mean by melting, I graduated from ASU, hang in there, in a couple months your awesome "winter" will be there.
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gramen, I live in a small town and they do not have a support group for Stage IV only which is why i have never been. I would love to meet a few women in my town who are going through what I am. But will not go exactly for that reason. I feel i will scare and bring down the group. Plus all the super pity looks and back rubbing....NO THANKS!I was surprised too, to hear that they can ask you details about your cancer. i did not think that was allowed. Since they passed the pre-existing medical conditions clause I am not sure what difference it could make?
kaayborg, I am so glad you had a great vacation and were able to not think about your health for awhile. It is soooooo wonderful to be able to shake off that mental burden for even short periods of time. yes, I HATE the end of summer. It went so fast this year as I mostly worked on our house to de-clutter and put it on the market. I am such a homebody, I love being home just tinkering around. Sometimes I contemplate applying for SSDI. But I think for now work keeps my mind engaged in a positive way and I would very much miss the human connections, especially the kids! Good luck with Tuesday as well! Hope the allergies are setting down.
Welcome back Lvin! Good reports there, Yea! That cracked me up about the weight loss comment. I was thinking like that the other day, as I have lost about 15 lbs since Dx and am rather enjoying how my clothes fit better, even for all the "wrong" reasons. The job thing can be awkward for sure. I have a new boss this year and my first meeting with her is Thursday. I have to break the news as well, that her Admin Asst is Stage IV and am a bit nervous....
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Glad you are back ShetlandPony, and great to hear from all of you inspiring women!
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Thanks, Mods!
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Shetland thank you so much. Not even normal to think they mix these two groups, absurd.
Gatorgal thx. It's really so confusing. She is very petite, 5ft, she used to be almost 5'2, but she lost a lot of bone, and she never weighed more than 100 at best, and 93-4 the last few yrs. So for her to gain 12lbs too soon could be much, that's another problem. Believe me I could totally understand about the lost of weight, with all the worries, lack of sleep I don't loose one pound. It's also due to her built so it's so obvious. That's the problem. Pizza guy asked if she was a kid….Going to MO this week, we'll see how much she weighs on Thursday.You are still on Navelbine and other stuff, or just the last one you posted?
Stephanie you are such a fountain of help, thanks sweetie. I checked that thread, but it's very confusing.
Now that we are allowed access to Portals, docs office wants us to check results at the Portal. But it takes, 4 days to get the info. They have no sensitivity. I will have to be a pain in the butt, and try to get the info. Also, I am very anxious about the ALT/AST and Alk Phosph. I don't wanna wait till next Tuesday if she is takg the blood test on this Thursday. I hope they cooperate.
Kaayabor wow so nice you had some down time. With the kids?
All of you ladies are soo wonderful, and thank you so much for being so supportive. I have been extremely anxious with this status now, also with the lesions in the skull. I spoke to an outside RO and he said we should ask for Radioembolization. I will try, but they seem so adamant in doing less. I cannot even get them to do a biopsy. And I know, ONCO does not make decisions on her own, she has group meetings. I do wish they would be more aggressive. I think.
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Mom, they should be able to get AST/ALT and Alk/Phos pretty much the same day....
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mom, I'm only on arimidex now. Tried to update my profile but it didn't work. No chemo for a while. Had a 3" tumor on my iliac bone radiated and will scan sept. 1 to check that status. Feeling good right now being only on arimidex. Would love to be able to stay on hormonals for a while. Side effect: weight gain!
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hi all! Had the liver bx and it really was pretty simple. Didn't hurt at all and wasn't even sore the next day. Had chemo 3 days after. Got my pathology report and my receptor status hasn't changed. Still ER/PR +, her2-. MO and I thought for sure receptor status had changed given how badly Ibrance failed. So will continue with gemzar/carbo every other week until next scan in Oct. Getting chemo tomorrow and have a bachelorette party this weekend. I'm probably just hang with the girls Saturday afternoon at Zephyr Cove. Other than that not much else is going on. oh, I got my welcome to Medicare packet so I'm researching best option... Medicare advantage vs. A medigap policy.
Thank you for the well wishes and advice!
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Thx Artist, I will try to ask. They don't care much to make me happy. I saw that already.
Gatorgal got it, thx
Shelbym i may have missed if ou posted earlier, how many lesions do you have? A lot, few? Did they talk about radiating at all? And glad you over the biopsy. Onco refuses so far to biopsy. Why oh why. To us, they say it's bcs it would not change the treatment.
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Hey ladies, just wanted to check in, its been awhile. I had my PET scan monday, it showed my primary tumor and lymph nodes as stable, but what is weird is the spots in my liver. I have 3 and 2 of the spots got smaller and one got larger?? I see the onco today, so I should get some answers. I just completed one full year on Ibrance and letrazole. I am hoping my results will allow me to stay with this plan. I am going to go back through and catch up, just wanted to say hi first!!!
alissa
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mamatwins I know, I see this all the time in Dani's reports. But let's see what Onco says.
I am preparing myself to Onco's visit tomorrow. I am sorry, but I gotta put it out there. She was giving me such grim prognosis. Why? I know that Dani is very young, and her monster was very aggressive. But I saw in Onco's eyes she really did not see a very good way out. They are doing what they know, i know that. Also, I wanted her to be more aggressive. I am reading about embolization, I am gonna try to push tomorrow. But they seem so resigned to it not being a good prognosis. And I am trying to find more ladies that are on Navelbine/Herceptin. Should I start a new thread?
I think she does not want her to be on a heavy chemo, neither does Dani, BUT she wants to live and have good results! This is a major Hospital Center, I know Onco has hard experience, that's what scares me more. Not happy.
I see so many here doing well after 2 yrs so what gives? Till tomorrow, I could tell myself she will sing a different song tomorrow.
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Mom. I am not sure where you are but it does not sound like you are having a very positive experience with the center you go to. I wonder if you could talk with their administrative team to let them know how it going for you. The last thing you need is more stress trying to navigate everything without people who want to help you and make it as stress free as possible. When I first started out I had a few issues with my Onc and very reluctantly had a conversation with her over her contradicting some information I had researched. She was receptive and it helped our relationship immensely. I say reluctantly as I have had trouble in the past confronting people of perceived authority. Not so much any more since my life depends on it!
Shelby, So glad you got through the biopsy OK. Hope that gem/carb combo works wonders for you. Have a blast with the girls! I plan to start researching SSDA and all that soon, just to be armed when ready.
My insurance denied a PET this time so I had a CT scan for the first time. So results are hard to compare but all in all she said it looks pretty stable. Now I am waiting on blood results for TM's and enzymes. I am praying hard for no changes in Tx. I need to let go and relax and little for a month....
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Mama, that is interesting. I'm hoping you here that mixed bag is as good as stable and your treatment stays the same for a good long while.
Artist, pretty stable, well let's just celebrate that too! Best wishes for the TMs to confirm it.
Momallthetime, keep advocating. I wonder if you might see another doctor in the same center. Sometimes it can just be a personality thing. Some doctors manage to keep more of a positive slant. After all, no one, despite how knowledgeable can predict exactly how this thing is going to land. Why not keep it as full of hope for as long as possible? My onc is great at this, though I also appreciate that she will be honest about the not so lovely end of the spectrum if I dare ask.
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momatt, I have 3 specific lesions 9mm, 11mm and 14 mm. They are close to my gall bladder. But also have diffuse mets. MO explained that it's like a when a paint brush full of paint has had its bristles pulled and paint splatters the wall....
No, we did not discuss XRT as the gem/carb is working. Actually had liver mets in April but radiologist missed it. July scan showed a decreased in size which prompted me and my MO be like " liver what?" He then got a big investigation, pulled all of my scans past 2 years, had them all re-read at another facility. I'm very happy with the outcome now. Have to wait n see what happens with October scan.
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Artist I know, but unfortunately just happens I am helping out someone very close to me, just diagnosed, he is in a different Major Center, and you cannot even imagine what he has to go through. Let's just say that since diagnosed 2 wks ago he has not been able to speak to Onco directly. First thanks for your support. It's so not my personality, I do tend to deal with people very direct, but these ppl hold so much power, that at this time I think the best I could do is really try in a very nice way to work with her. The problem is, that I really feel these docs try to distance themselves from difficult situations.
What was the reason they denied your PET? Too soon? You know, sometimes doctors could and should fight that this is not a cosmetic issue! Aghh so sorry you have to deal with that on top of other things.
Kaayborg in a perfect world, yes. This is a BIG Center, BUT as I have learned, it feels like one is falling the rabbit hole. This Onco was recommended by the MAMA Onco there, but this one specializes in Mets. And just today, I called Mama Onco and asked if we could also have a visit with her, I told the secr I don't wanna step on anyones' toes, but..., and she is like, oh no, now you are a patient of the other doctor, but I should not worry bcs they convene all the time and discuss everyone. Yes, but MAMA ONCO, was old school, and she cared!! Yep, and so it goes. Maybe, maybe this one will warm up. Although I mentioned it to my GYNO, (who happens to be from the same hosp) and I asked, is there anything I could do or say to get them to really care, and him also being older than Dani's onco, said no! Either it's there right off or ….
Before I got to this Onco, I was looking into another onco in the Center, and that secr told me she will see if the doc will accept Dani, because it would be called "transfer of care" and she does not do this. Yep in big old New York. Politics, politics all the way. We are just an afterthought.
Shelby how lucky for you that your Onco went through all this trouble. Freaking Unbeliavable!! My daughter had been 2 yrs ago on carbo/gemzar, it was tough on her. They took her off it. And btw she had progression even on it. I truly think she sets the record for the weirdest wildest C monster. So far, no doctor could make head and tails from it. Thank you for giving me the info on the lesions. She started with 2 lesions. Then in 4 wks, went to numerous. I don't have sizes, the first two, were about 1.5cm each.Let's see what the enzymes and TM will show this time around.
BTW which TM do your doctors take for liver? The TM that she had was CEA, but they stopped, and then only Ca15.3
Anyone did the embolization?? TIA everyone,
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I get CEA, CA27.29 & CA15.3 done monthly now. Ironically it wasn't until March when my TM's actually represented. For the past 2 yrs ( done every 3 months with scans) including my stage IV dx where my TM's were 12 and lower. Completely worthless. That's why my MO says "you're a scanner..." In MArch they jumped to low to mid 40's. I understande those are little numbers in the big picture,but for me it was huge jump. It's also when Ibrance failed quite spectacularly. I had major bone progression and unknown liver mets. MO says more cancer to cause markers to register.
MO is also now doing some kind of blood tumor DNA something to see what may work. I've had the Foundation 1 tumor DNA sequencing done on my rib. 27 mutations but only 1 that had a recommendation for chemo- Ibrance. Ha!
I am very lucky to have this blood guy. I just love him and he listens and gets upset when I'm upset with radiology and when i want to do something we don't argue. One time I had to seriously move some chemo days around not following the day 1,day 8, day 15 treatment plan. I ws going on vaca, which he knew about but the pharmacist at my treatment center didn't. She called my MO to almost tattle and also complained it made things harder on them messing up the notes and cycle #'s blah, blah, blah. My MO very firmly said "Shelby's treatment is for her quality of life, not cure, and if dressing up like Harry Potter in Florida extends her life even 1 day then our job is to help her do that! Get over it! "
So Thank you I am very proud I picked a good one be on my team. That's what I said when I went to my first appt. I told him I was designing Shelby's Team and explained how I communicate, the type of patient/dr relationship that I felt I responded best too and hoped they could work with a patient who believes she is the boss of her healthcare and decisions made . I said 50% of my fight is having this kind of relationship with my doctor. I told this to all of my doctors.... rad onc, cardio-thoracic surgeon, plastics and general surgeon, primary care, my dentist and ophthalmologist, gyno and, physical therapist. Lucky for me they all agree. Our 5 yr cancer dx date is coming up and all of my doctors are still the same. I've only had a second opinion once at MO's urging and the office even set it up. 😊
Good luck with the new MO!
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Shelby yeah on our fist visit I told Onco how i had to be the driver with ex Onco and how taxing that was, and she said no, here you are gonna be a passenger with me. I will GENTLY remind her of it today. Waiting 4/5 days for Portal info, it's not normal for people that like to be in touch of what's going on.
CEA was in "normal" margin and meanwhile she has extensive mets in the bones, liver and skull. So how is that even possible? I think that may be the reason they did not repeat it the last time. Her numbers were always low also, on all tm's, and even when all the time is showed progression on scans, it wasn't crazy on Tm's. So That's one thing I am not get very upset about.
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Shelby, your onc rocks! What a great response to the pharmacist. Like Shelby and Momall, I told my onc how I preferred us to work together early on. I didn't really think about having that conversation (smart of you to start off that way), but it did happen. Of course she saw right away that I was very educated and involved, so at one point she said, "You're in charge" or something like that. I told her, "No, I don't want to be in charge, I don't want to be responsible for the decision-making. You are the one with the education and experience. I do need to understand everything, and why you recommend what you do." Also, she told me she respects my intuition because it has been right in the past, and she often asks what I think when she is considering things. So I am happy with the way we work together, and impressed with how well she tuned in to what I need from her. She is not at all bothered by my in-depth questions, and she answers them with confidence. Momall, I hope Dani's current onc will very quickly learn how to best help you and Dani.
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