August 2013 Chemo Sisters
Comments
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Lindsey 32,
I will be at MD Anderson in Houston, Sept. 3rd, 4th, and 5th. Too bad, it would have been nice to connect with someone I met here face to face.
I loved the non-toxic markers, what a great idea! My children are older, coming in and out from college and jobs, one of them came home with Strep throat, the other had the flu, and my husband just got over some GI bug. Keep masks by the front door, and wash your hands all the time! We will get through this!
I also will have surgery after I am through with the chemo. One day at a time. I think you are doing great!
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Thanks, lighthouselady, for the information about neulasta. You're right - I'm on AC every three weeks so I guess that's why I hadn't been told about it.
Bellamomma, will you be at MD Anderson in downtown Houston? I'm going to the MDA in the Woodlands - just was there Friday and am not scheduled to be back till Sept. 14.
Rayna, you're our source! Sounds like tastebuds will be gone from day 6 to about 13 and that's when the hair will start to fall out. I've already got my sister (from Memphis - about a 10 hour drive) on alert to come down when my head starts to tingle. My husband is almost bald and although he offered to shave his head, I'm thinking my sister will be alot more sympathetic company!
Since I'm having chemo before surgery, I don't have the decision quandry alot of you have. However - here's a thought for the day that's helped me already:
Sometimes finding God's will is more plodding than plotting. One step at a time. Don't worry about what lies dimly in the distance. Do what lies clearly at hand.
love y'all!
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Rayna,
Hope your doing well! My bilirubin was up for a week, it settled down and I didn't miss a treatment. Yay!
Appreciate hearing from you! I know you are going through this chemo. journey with its ups and downs, but you always have such a positive spirit.
We will make it through this!
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ForMyGrandD,
I have switched to Tom's deodorant. Everything I am using on my body now is very mild. Aveeno baby wash/shampoo. Enjoy reading your posts. We will get through this together!
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SaltyDog,
Yes, I will be at MD Anderson in Houston in the Mays Building from Sept. 3-5th. Wish we could connect, but I understand, it sounds like it still is quite away from where you are receiving your treatment.
Hope your day is great, with no SE!
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Saltyjack - my MO never mentioned Neulasta to me either. I asked him about it after reading about it here and after a third opinion at UCSF told me they would have me on Neulasta too (even with AC every three weeks). He said he just didn't like the idea of extra shots and surgeries (he also nixed the idea of a port unless I showed a reason why veins weren't fine) unless they were deemed necessary. So I guess I will find out next week (tx #2) if my blood cell counts are fine without that extra boost. I think perhaps some MOs are more conservative in treatment than others and that may be why yours did not offer a pre-emptive Neulasta shot.
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I just Googled home remedies for thrush: equal parts water and hydrogen peroxide, swish in mouth 1 minute 3 times a day; also use salt water rinse, eat cold popcycles, use soft toothbrush, don't use mouthwashe (upsets the flora in mouth) I just used one before I read that! I will call my doctor (24-hour line) tomorrow if it's worse to get fungal medication. It "ain't" over 'till it's over, is it?
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thank you all fr the birthday greetings. You have written so much inthe last 4 days I can't keep up. ; )
I had my 3rd of 4 ACs! Yay! Also doc says nodes are shrinking! thank GOD!!!!!
V
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SaltyJack: Wonderful words about God's plodding vs. plotting! I am so one day at a time about this whole cancer roller coaster, it's my way of life. Though I will admit to have lots of stuff in hand before I need it (ie Biotene, Colace, wig etc.)!
Saw a movie w very few people in the theater. Kinda tired now so maybe I'll sleep welll tonight.
Good night all! -
Hooray V! Way to go girl!
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The PET Scan came back clear!!!! YAY!!, so right now I will focus on one breast!! Looking forward to celebrating with my family who are up from Mississippi.
Have a great Labor Day Weekend Ladies
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Oh, Tonya - I know just how you feel. I had a PET scan, MRI, ultrasound and EKG on Tuesday and had all the results when I met with the surgeon on Wednesday....exept the PET. I waited as long as I could then finally called the MO late Thursday (the results were supposed to be in by that morning at the latest). Pretty crazy, isn't it? A month ago the idea of having breast cancer was the most devasting thing I could think of. Thursday afternoon when the nurse told me that the PET was clear and I only had cancer in my breast and lymph nodes, I was ecstatic!
Funny old world....the new normal. Happy Labor Day, all!
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Cougar~~Typically if you get AC every 3 weeks as opposed to dose dense, you don't need Neulasta. You have an extra week for your blood counts to regroup.
Paula -
Its so true SaltyJack, I was completely fine in June, then all of sudden BAM!!! It's crazy, it really makes you think of all the things you take for granted in this world. I try not to yell as much, be as crazy about the house being clean, etc...those are such stupid things to be upset about once something like this happens. Now I talk alittle softer, hug and kiss the kids as much as I can, and my husband and I are so much closer too. It's crazy!!!
It looks like we are getting the same Chemo tx too, I hope your doing well with it. I have my 2nd tx on Wed 9/4, the MO gave me a different nauseau med to take so hopefully it works better then the last.
Have a great weekend.
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Hi Bonski,
It looks like you and I are the only ones on FEC-T so far. It is interesting that we are doing them in the opposite order which is useful for both of us, because we can let each other know what the treatment is like that we are heading into.
So far I'm day 12 of my first FEC. My SEs have been being spaced out and fatigued days 2-5 and constipated until day 5. Other than that I've only felt occasionally nauseous but not enough to need extra medication and I've had a burning stomach pain about 3 times after eating fruit. The odd shakey feeling in my thighs that you couldn't really count as pain. A bit of acne developing - just to make you feel extra attractive! So pretty good. My hair hasn't started to shed yet.
I'll be interested to know how you are going.
My sister and lots of relatives are English and when I go to stay there, they always complain about not understanding me! I once had the experience of asking for something in a shop and they looked utterly blank...the English language has such a big family! -
I'm interested in all the scans quite a few of you have. When I asked the BS how did they know I didn't have cancer anywhere else he said they didn't, but scans wouldn't be likely to show anything at this stage because any roaming cancer cells would be too small to spot. My tumour was also in the inner, lower quadrant (apparently rarest and most dangerous place) so I asked him how they knew it had not gone to the lymph nodes that run down the middle of the chest and again he said it would be rare but they didn't know for sure. It doesn't make me feel hugely relaxed.
I guess this is the down side ( or upside) of a public health system. Down side because maybe they would find something on me, and upside because maybe a lot of people get tests that don't actually prove much (not trying to put a downer on things or upset anyone - but how much money do they make for each test they run ?) -
Debdylan: I feel bad that you have such a difficult decision to make. I not have neuropathy as such but I do have limited use of my right leg due to a bulging disc in my back that I got right before I started chemo, I have feeling only in my big toe and absolutely no strength in this leg so I was concerned about neuropathy and hoped that if it happened it would happen to this right leg so at least I still had good use of my left leg. With more that you tell me, I think if it was me that I would maybe choose not to have the chemo but this is only my suggestion. Someone asked about your doctors, do you trust them and if so what are they recommending?
I pray you will come upon a sound decision so you can put this behind you.
Love, Rayna
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My main tumor was in the inner, lower quadrant, too. My BS does a breast MRI as standard procedure, and mine showed another tiny "satellite" mass and a questionable lymph node. That resulted in another ultrasound and PET scan. I feel much more confident having these scans, as my mammogram only showed "subtle findings". 4cm tumor is a bit more than subtle!!!!
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Bellamomma: I noticed above that you said you had a blood clot in your arm, can you tell me what happened, did your whole arm swell quickly and what they did about it.. I know that these drugs can cause blood clots and I just noticed that my right leg is swollen, the calf, I have no shin bone anymore and of course I automatically think "I wonder if its a blood clot" and that scares me, I don't know if it should or not but I've always heard about people with blood clots going to their heart or lungs. The doctor told me that we would notice long before that happened.
Does anyone else have fluid retention and swollen calves?
Thanks in advance for the info. and to anyone else who might have something to say.
Oh by the way I just had a bath and I put a very mild facial mask on my face and thought why not do my bald head as well, so I did and then put some Hempz lotion on and does it ever feel wonderful.
Love, Rayna
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Mankotostate: You're right, water tastes horrible for the first two weeks, I find. I tried to explain what it tastes like to my husband and I think it tastes oily or greasy. How about you?
Bellamomma: Thank you for your comment, I love everyone on this board and don't know what I would do without it. There are a few of us having surgery after the chemo. I figure mine (if everything goes according to plan) should be around Oct. 30 - Nov.1. So I was thinking with 6 weeks for pathology wouldn't it be a wonderful Xmas present to hear that I am NED (No Evidence of Disease), my son thought it would be a good idea to get a whole bunch of Fire Works and as soon as I've heard that I have beaten this we will get all our friends and family to come over and have a Bar B Que and then set off the fireworks.
SaltyJack - Aren't sisters awesome, mine had hair down to the middle of her back (same as me) and when I shaved my head she made an appointment with her hairdresser and had it cut off to just below her ears (and she loves her long hair)when she got home her husband saw what she had done so he shaved his head. My husband and 2 sons all shaved their heads the day I shaved mine. Wonderful support I have, I feel bad for anyone who is going this alone, that would be so hard. Bellamomma and Gavinsgrandma and I are all having surgery after chemo as well (sorry if I forgot anyone)
Debdylan: from my experience I know I wouldn't have been able to work because of the extreme fatique and because I do bookwork I couldn't have because of chemo brain, I couldn't concentrate on anything. I do books out of my house for my husbands company so I am lucky to be able to work when I feel able. I have heard of a lot of women who have worked right through their entire chemo, everyone is so different. I guess if you had a job where you could play it by ear and work days when you felt up to it and then take off days when you didn't feel up to it would be awesome. I hope your decision making has taken a little break from your brain for the night. Oh great if it was, I just made you think of it. LOL
Praying that everyone has a wonderful weekend and a great nights sleep, for those who are wandering around their houses while everyone else is asleep, I pray tonight is the night sleeps finds you.
Love, Rayna
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HVV Happy Birthday, so glad your nodes are shrinking thats wonderful news and you only have 1 more A/C to do. That was all a great Birthday present wasn't it.
Tonya: Congrats on the results of your Petscan, isn't the waiting just unbearable. Have a great weekend visiting with your family.
Saltyjack: Congrats on your scans being so positive, I know the waiting is sooo hard, I think at times it was one of the hardest parts of all of this. When do you think your surgery will be? What kind of surgery are you having?
Cougar: My onco never mentioned the Neulasta shot either until I ended up in the hospital for 4 days with low Nutraphils, then for my second infusion I got the shot, actually brought it home and gave it to myself.
Gashgold: I was concerned about them not doing other tests as well, I want a complete body scan done so I know for sure. LOL I think they rely mostly on the Sentinel Nodes to know it hasn't gone to the lymphatic sysem. I read it has two ways to spread the lymphatic system and the blood. maybe after my chemo and surgery they will do other tests, I kind of hope so.
Bonski, Welcome and I'm glad you found us, sorry you had to though. These women are awesome and I hope you will find as much comfort from this thread as I do.
Well, that took 2 hours, we are one huge, wonderful group, aren't we ladies. Warriors, all of us!!!
Goodnight, Love, Rayna
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Lighthouse - just wondering if I understood you correctly..are you saying the mammogram only vaguely detected a 4 cm tumor? That's scary! I read somewhere though its harder for mammograms to pick up some tumors in younger women because of greater breast density. ( still to figure out how they change density).
Rayna -I did take note of your recommendation to go to the doctor about the port problem but am pleased to report that today is a marked improvement anyway . The bruising is still very obvious though 12 days later. The oncology district nurse( nurse who visits your home for free to check port, take stitches out and take bloods!) said mine did look particularly bad , maybe it was because I was thin...( at that point I was trying not to laugh as she is the first person to call me thin in many years...pity it had to be illness).
Rayna, so one leg swollen. Doesn't sound good although it may not be a clot, I'd still check it out.
debdylan- I've only missed one day work so far (only 12 days in though) and that was because of the port not the chemo. But my job is not terribly physical...if I were to judge it by whether I could dig the garden over for spring, I couldn't have done that for the first 6 days, maybe could have done it for an hour or two each day since.
I guess if its semi physical like....waiting tables... You'd probably cope but you'd be exhausted. In the end you can't really know because some of us are having far worse SEs than others and there is no way of telling who will get the short straw. -
Hello ladies,
Someone has kindly pointed out that I shouldn't tell people to demand scans and I do agree with her to a point. This is just my opinion, I am not a Dr, if I tell you to jump off a roof, would u? Please ask your drs what is right for you as an individual. I said demand scans because I didn't know I had the option. When I looked back at my journal notes from my previous breast cancer battle, I saw that they were going to do scans, but nothing was scheduled, I changed onc in between cause mine opened up his own practice so maybe that was the missing picture.
Who knows, but the fact that my new onc is asking me how do I know if I really was all clear after chemo, surgery, and radiation when I had no scans done? I was in shock, I didn't know! Once stage 2 triple negative, now Stage 4 of unknown origin with mets to brain, bones, lung, appendix, left neck, left shoulder, pretty much everywhere! They're still working on pathology! How crazy is this! I thought I was in the all clear! Living a happy healthy life with my 2 young girls (10 & 7yrs old) and husband! Why? Why? Why wasn't I given scans, what happened to close monitoring for the first 5 yrs, I didn't make it to 1yr? Why why why!!!!!! This is so frustrating!!!!!
I'm sorry to the new folks if I am freaking you out, but I want to believe I'm a minority and this doesn't happen to most of us. It just seems unfair! I did everything they told me to do, ate right, exercised, got blood tests done like clockwork, all normal. How can they be normal when I am Stage 4 with mets. I guess blood tests aren't very accurate either!
I apologize, for my rantings and ravings, but where else can I do this. My family is devastated right now and I have to act strong in front of them so I'll let myself go here. My elderly parents have to see their only baby daughter go through this not once but twice! If one of my children got this disease, I don't think I could bare watching them struggle and just die! I feel like such a burden on my family! They are all so supportive, but at what cost?
I will beat this no matter what! But I really really hate FCA! Where's the damn cure already, enough people have suffered and been lost! Stop taking mothers!!!!!! What will our babies do without us? -
Naan, I've lost my post to you three times. I'm trying.
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Naan, I feel your deep hurt, frustration, and pain. I am claiming a healing for you through the name of Jesus Christ today. You can beat this and God can heal you. All he wants in return is for us to praise him and tell others about the miracles he performs. I truly believe that with all of my being. Where 2 or more gather in his name, believing, there will he be also. We can gather across cyberspace. We're doing that right now. I have been praying a lot for you, but I'm going to pray more fervently. In the name of Jesus, you can be healed. With TNBC, as I also have, we have to ask for extra tests and scans because I don't think doctors know enough about it themselves . I had to fight to get chemo, and after I did, my MO said thlat he's glad I came back after seeing the specialist. My specialist called him and told him the treatment she recommended: TC 4x 3 weeks apart. You need to demand every last test you can get to get ahead of TN. It's a whole new ballgame. I'm with you and will be that second person agreeing that you will be cured. You are the 1st, I am the second, so let's do this. Sharon
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Julie, in my country on our public health system you can't demand scans. There is only so much money so they allocate to whom they think has the greatest risk I guess. So I wasn't given a choice. I won't be getting scans unless I have other symptoms even though I do have lymph node involvement. And you were triple negative, so yes why didn't you get scans...?
What close monitoring did they say you would get?
You have a right to be really angry. I was really angry when I thought they'd misdiagnosed an earlier lump and I thought they were going to tell me I was stage 4. I can only imagine how angry you must be. And you are right, there is nothing fair about it.
Rant and rave as much as you like, Julie, I just wish we could all hold you in a big hug while you do. Well, maybe we sort of can, electronically...
I wish we could also hold your girls and parents too. I guess the best we can do is in our prayers. It must have been so hard to tell your parents. It took me weeks to tell my mother my diagnosis. My younger sister has already had serious health issues ( brain haemmorhage at 40) I just couldn't face giving her another worry. In the end i got my husband to speak to her husband. For you, being an only daughter, heartbreakingly difficult.
Blessings to you, Julie. Night (10.30pm Sunday) -
Hi girls honestly i am feeling very well now, i had my firts treatment on friday afternoon. My last steroids i took them likd three hours ago. Do you think that after their effects are gone as this is my last intake for this infusion of the steroids i shoul now start feeling bad .?
Thanks for your wisd advices !! -
How long does the bone pain last from the neulasta shot? I awoke this morning with every bone in my body hurting. I am going to take Claratin.
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Naan~~ I'm so very sorry for all you are going through. I won't even pretend to act like I understand what you're feeling, because I haven't a clue.
I do promise to pray for you though. God still does miracles today.
Blessings
Paula -
rayna~~I did develope a blood clot in my thigh area several days after my final AC. I had no pain at all in that area. The pain was all in my calf & foot, and my leg was pretty swollen.
I didn't believe it was a clot. Usually on days 7-8 after AC I urinated so often getting rid of the steroids, so when I didn't do that this time, I thought it was swelling from steroid buildup.
The nurse at my cancer center (when I called) told me I needed to get it checked, so I googled blood clot. They said, if you flex your foot and it causes more pain, its probably a blood clot. I flexed my foot and OH BOY!!!! PAIN!!!!
I went to the ER and knew 15 minutes from arriving that it was a blood clot.
My onc believed it was caused by chemo, so I gave myself 2 Lovenox injections daily for 4 months.
Blessings
Paula
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