Starting Chemo January 2015

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  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    JazzercizeGirl, good to hear from you. Glad the tests, so far, are good and hopefully the Echo will be equally good. You and I have the same problem, that ONE positive node. That very minute little node was the reason I was happy to do chemo. Now, I am afraid the MO will insist on radiation, even with a BMX, because of that ONE €*#{£! node. Got my fingers crossed for you.

    Mommacat, my eyes popped when I read that steroids mask cancer cells in blood. And my heart broke when I read about your DMIL and DFIL. I am so sorry. I had a PET scan before chemo started; but only to see if a mass in my right lung was cancerous...it wasn't...phew! But I was so relieved to find that I was NED. Whenever I read about someone wanting a PET scan for reassurance I wish the MO and insurance companies would understand how important that scan is to us. A MUGA is like an echocardiogram, but they inject a radioactive dye and the movie of your beating heart is not distorted by a swollen breast, or in my case, the wand being passed directly over the scar tissue. EF means Ejection Fraction, which is the percentage of blood pumped out of your heart. Adriamycin and Herceptin are known to lower your EF. Although rare, adriamycin causes damage which is permanent and progressive. Lowering EF on Herceptin is usually reversible by just temporarily stopping its use.

    Wendy, what a mess! I just want to crawl through my iPad and make you some chicken soup or something. What can be done for the PPE? Muscle spasms in the back are dreadful. Hopefully, that was the only time you get those SE's.

    Everyone have a good day today, please! I will stay close to the throne room as my lovely Cardio Dr. prescribed a diuretic. Never took one before, but I am hoping to be five pounds lighter by this evening!

    XXOXXO



  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Marjorie, you posted while I was typing. You are so strong, but don't ditch the winter coat yet. Let me send you some of our 70 degree temperatures. Don't be jealous...we've got 100% chance of rain for today and mostly rain for at least another week. That's what our Spring is always like...flood watches and soggy gardens.

  • PMR53
    PMR53 Member Posts: 452
    edited March 2015

    Hi all! Just checking in. I have my last chemo on Monday. The cumulative SE are building. I feel 100 years old. Ache all over. I am dreading Monday but also glad it will be last cycle of TCHP. I will have Surgery in 5 to 6 weeks. Forget who asked but I had a PET SCAN before chemo and SNB. It was a relief to know it was negative.

    Think of this group everyday. Sometimes just getting through the day wears me out. Looking forward to Spring. Just ordered some seeds from Burpees.

    Have a wonderful day!! Stay strong!

    Patty


  • Brandi999
    Brandi999 Member Posts: 143
    edited March 2015

    RV6gal, I had hand and foot syndrome. I'm adding a pic of one of my toes a few weeks after the pain subsided. Avoid walking as much as possible and I put that really thick Aquaphor on my feet 24/7 with socks. It can get really bad. No hot showers or baths with your feet in them. I did take baths but had my feet hanging out. I said it felt like deep blisters and found out that's because it was!

    PS... They did not let me do a smaller dose of steroids but they said next time I can do a half dose.

    The blister actually goes all the way around

    image

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    Yikes Brandi! Weeks after the pain subsided means I still have a way to go. I can see some whiteness in mine but it is mostly still red and warm. That is helpful information though and I appreciate it. Yup, have to be very careful with the bath/shower water. Thanks for the update on the steroids too. I'll let you know what they will let me do. Has the hand and foot issue resolved completely for you now?

    Sweethope, thanks for your sweet offer. It made me feel better!! The good thing about this PPE is that I have really had to ask for help from my DH and kids and that is a good thing for me. As far as I have learnt about this PPE so far only time, icing and moisturizing is all that can be done. I'm very lucky it is only on my feet! I've been super careful with my hands and I'm not sure why I forgot about my feet! Duh!!

    Marjorie, I'm right there with you on the positive optimistic tangent. To me there is no other way! I will get through this challenge too. I also feel like the time is going pretty quickly when you look back. Hallalujah!! Hope you didn't "burnt" at work today!!

    Patty, the days can be tough for sure but glad you are looking forward to spring and planning your seeds. That's the important stuff!

    On a funny note, a good friend of mine that I usually meet for breakfast and shopping almost every Saturday just emailed me to see if I was up to it this Saturday. I told her I was up for breakfast but couldn't shop as I was walking on my tippy toes! She emailed me back saying:

    "sure that would work - you can pretend to be a ballerina hahahha"

    I laughed so hard and sent her the following answer:

    "ha ha ha ha.... well I shall come with my "too too" large butt and try to be light on my toes...LOL"

    I totally love the way she supports me with humour.

    Hope everyone can have a good laugh today!!


    Wendy




  • jlstacey
    jlstacey Member Posts: 277
    edited March 2015

    I thought I would share this with you all. The nurse at chemo today told me to start putting vitamin E and Tea Tree Oil on my nails and cuticles in preparation for Taxol. I am two weeks out from my first treatment- just finished AC today. She said the had a patient get a terrible fungus and the tea tree and vitamin sGould help prevent that. I started B6 today too.

    My nausea never truly went away after the last round so it started in worse than normal about an hour after chemo today. I'm in bed with a bowl trying to breathe through it.

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Hi Ladies, I had my ECHO and I had my meds increased, but everything is pretty stable right now. The heart function has not decreased further, so a good thing. I have the next ECHO in 3 months. I am on hold for the next chemo until the MO consults with the Cardiologist for any additional treatment. And I have to have a ECHO after every chemo round to watch for any more damage from chemo. I still have the shortness of breath and the cough, but it is getting better with the heart damage controlled. So good news! Just not too sure where that leaves me for further treatments.

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    Beachbum, congratulations on the great news about your heart function results.I hope they can come up with a good solution shortly about chemo. Waiting is the chits. I'm sure you will feel better once a plan is in place!

    Wendy

  • TeriMP
    TeriMP Member Posts: 89
    edited March 2015

    that is wonderful new beachbum!!

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Hi RV6gal and TeriMP, Thank You! I am kinda good right now after all of the chemo, surgery, and rads, I am kinda liking the break. It just sounds so good to have nothing on my schedule for next week. I hope to keep chemo away as long as possible. :) In other words I want to go swimming this summer and not have my hair fall out or off if I get hit by a wave! My hair is over a inch long so I thought I would have a short do for the summer. Big sigh...........

    Good news Ladies, we are almost halfway through March already. Moving forward, one day at a time! You got this, just have to cross the finish line. I'm waiting for you.......yep we are never alone here. :)

  • JazzerciseGirl
    JazzerciseGirl Member Posts: 15
    edited March 2015

    I had my Echo yesterday and am playing our waiting game for the results...... Thankfully, my shortness of breath has lessened from earlier this week. And my pulse has also come down from 120 to 80. (Baseline before chemo was 60.) Maybe because I've decreased my activity to almost nothing!

    This experience is teaching us so much, isn't it? I've had days were I too felt like an old woman who could barely walk due to weakness, fatigue and pain. As I sat suffering yesterday dealing with constipation, the pain from inflamed skin and hemorrhoids, and the indignity of all this, I began to better understand that this would ultimately help me be a better nurse/caregiver/human being. "You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it." Harper Lee, To Kill a Mockingbird.

    I'm not working now, but I stay in touch with my nursing coworkers who are incredibly supportive. A few of us are celebrating the birthday of our secretary on Sunday and they are coming to me since they know it's not always easy for me to get out. I just adore them for this. I can't do much theses days, but I can still eat cake!

    Jlstacey, you've been on my mind and I hope your nausea has subsided. Are you able to take fluids?

    I hope everyone has a good day today. Hugs to you all.

  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Good morning everyone.

    Beachbum, that is wonderful news that your EF is stable. With Rads over, and a break from tx's, you should feel like a new woman. Now if the weather will cooperate, you should have a great weekend.

    JazzercizeGirl, I am keeping my fingers crossed that your Echo shows a good, strong, healthy heart.

    Brandi, Your poor piggy-toe! Wendy, Is that what your's looks like?

    The diuretic took five pounds off me yesterday. I'm still waiting for the call about Muga appt. Today I do bloodwork and get screened for lymphodema. And it is pouring down rain.

  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited March 2015

    Hi everyone,

    I have been following all of you closely every day.

    Marjo, thanks for the optimism reminder. You are a trooper! Stay warm.

    Jlstacey, I am so sorry your nausea is so bad. I have struggled with it terribly as well. Sometimes I just break down and cry about it. Nothing seems to make it go away until the day when it magically lifts. AC #3 it took seven and I had my fourth and last infusion of AC Wednesday and then nausea just starting to build today. But the good news is this was the last one!

    Sweethope, keep us posted on your test results. Praying and sending all good thoughts your way. Stay dry in those Nola downpours. I actually miss those rainstorms. Last time I was on the street car in New Orleans we got stuck by Lee Circle for a half an hour in a blinding rain. Those cars aren't leak proof either! What a day.

    Patty so glad you checked in! Good job on ordering seeds what a fun thing to look forward to :)

    Wendy glad you are keeping up with your Saturday breakfasts with your buddy. I will confess that I have been hibernating or hanging out in my cave as Marjo puts it for a little too long. I think I need to get out. I may walk over to my best friends place today and look at the pretty flower boxes she planted yesterday this afternoon. Time to get out of these PJs.

    Beachbum, thank goodness the EC is stable. Praying for you and continue to appreciate all of your contributions, strength and hope you offer here.

    Brandi, your poor feet! I want to share a couple things in apost to follow about neuropathy prevention since many of us are entering taxol DD treatment .


    Love to you all. Kristin


  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited March 2015

    okay ladies this may be old news to some of you but I have been researching how to deal with Taxol neuropathy and nail issues.

    Some things I have read about that are supposed to help

    B complex vitamin

    B6 vitamin about 50 mg

    three times a day glutamine regimen as we have discussed

    Cold packs placed on a towel to rest entire bottoms of feet on during taxol infusion as well as cold packs wrapped around toes. This can prevent the PPE, neuropathy and nail loss in the feet/toenails.

    Frozen peas to keep fingernails iced during entire taxol infusion.

    Daily treatment of all nails with Teatree oil to prevent fungal infections lifting of nails and to provide an antiseptic treatment to prevent bacterial infection. Vitamin E oil was also recommended in a few places...

    Two products for recommended the first was nail envy by OPI to keep the nails strong. The second which I would probably recommend over nail envy is horsepower nail fertilizer by Butter of London. It has no toluene or other nasty chemmies to worry about. I like their products a lot. Natural nail stuff that actually works.

    It seems this neuropathy stuff can be a big deal. If the temp discomfort of icing fingers and nails during treatment prevents it then it's worth it. Check out other threads on here if you have time there are so many women who swear by doing this and they had no neuropathy after 12 DD taxol treatments. Perhaps the cold packs to the feet will prevent PPE as well.

    Other tips to prevent PPE were to avoid the hot showers , to be careful with working with hands, and certain tools that stress the hands, and lots speed walking or exercises that are rough on the feet, etc. ugh. That is my main form of exercise...

    Other recommendations were to avoid warmer water with hands even with glove use because the gloves can trap the warmth around the hands and increase risk of PPE.

    Ok sorry to ramble on, but if we can avoid a permanent adverse effect like neuropathy or the painful condition that Brandi and Wendy are experiencingit is worth considering these preventative strategies.

    Love you all Kristin

  • jlstacey
    jlstacey Member Posts: 277
    edited March 2015

    thank you for the summary Kristen!

  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited March 2015

    how is your nausea Stacey? Mine is hitting hard today. Discouraged. I know it is temporary.

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    The colorpurple - I am so sorry that you are not feeling well today. Have you tried the meds? Maybe some cold Jell-O or fruit? My go to was always popsicles. They cooled my throat and stomach and helped alot. Maybe yogurt, it's cool and pretty easy on the tummy.

    If you have neuropathy try rubbing Vick's on your toes and covering them with soft socks. I have meds for it, but the Vick's does help. Sally's sell Foot Therapy, a nice warm water soak that makes the feet feel good. I think it is under $5 bucks for the box, and it has 3 packets of the mineral bath. I soak my feet in it with warm water, and it's a little guilty pleasure of mine. I would sit and rub my feet and ankles in it. But feels great. That with a little ice pack on my neck feels good.

    Stacey - how are you doing today?

    I take Biotin for my hair growth and it seems to help a lot and it is cheap. But we all know, it just takes time. My hair is over an inch long, it came back after the first Taxol, so good news for all the AC/T ladies. Something to look forward to!!

    Patty I hope you are feeling better today!

    SweetHope - how are you doing? I feel much better knowing that I am stable on the heart problem. And I looked at my blood work and the levels have dropped my risk of heart failure by 2/3, happy dance to that one. So feeling better. So I am waiting to see what the MO has to say about chemo now.

    Marjo - I hope you can avoid all the germs on the commute every day. How are you doing?

    RV6gal - how are all of the extremities getting along?

    Jazzercise - how are you doing? Any word on the ECHO? Thankfully my Cardiologist saw me right after it so I left with the report in hand. I always schedule them back to back to save the dreadful wait.

    If I missed anything, and my chemo brain probably did, I apologize. I wish you all a comfortable weekend! Cheryl

  • jlstacey
    jlstacey Member Posts: 277
    edited March 2015

    thecolorpurple, my nausea has come and gone. I'm working on a fruit bar right now- this might be dinner. I've had a little dizziness from this AC. Has anyone else experienced that? How long does your nausea usually last? I'm trying to count down days- maybe only a week more then the nause will be all gone.

    I'm curious- what numbers do they look at on your blood work for heart problems

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    jlstacey - I had AC and was a bit dizzy if I didn't hydrate enough. I added Jell-O and popsicles when I could. Maybe more cold water or liquid? I always drank a small glass of grape juice also, it actually tasted like something. I always took my nausea meds starting the morning after chemo and took them straight through for 4 to 5 days so I could eat. It did get easier to eat on Taxol, some bright light. Hope that helps.

  • Brandi999
    Brandi999 Member Posts: 143
    edited March 2015

    Sweethope, so glad to hear of your test!

    RV6gal, I have more blisters showing up. My big toe is totally white now too. It's deep blisters that already healed and are pushing to the surface. I just have to wait for the new skin to build up because they really got deep. I'm refraining from posting another pic of my toes. LOL

    Anyone else getting dizzy on the Taxol? At first I thought it was from taking Xanax but even on the nights I take no meds I wake up feeling dizzy and slightly drunk.

    I'm really looking forward to not having a sandpaper head anymore.

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    Beachbum, I completely understand you wanting a break right now from chemo. You have been at this for awhile now. That is fantastic news about a 2/3 reduced risk of heart failure. Hope you are recovering well from the radiation also!My feet are feeling better today but still very tender.

    Jazzercisegirl, I hope you get your Echo results soon.I think that is wonderful that your co-workers are including you in the birthday celebration by coming to you.It is so good to have those normal life things going on.That's the part of the stuff we deal with that I dislike.In addition to suffering various indignities, I don't have many everyday normal things to talk about with people other than my health.When I do get the chance, I love not thinking about me.

    Sweethope,wow 5 lbs of fluid gone.That's good!Hope you don't have long to wait for that MUGA. My feet are not yet looking like Brandi.Not sure yet exactly how this will all play out.

    Kristin, I have had to cancel more Saturdays than I thought.That's the other crappy thing about this chemo.You just don't know from day to day how you are going to feel so it is tough to make plans.I tell my friends that I am willing to do stuff but they have to check with me on the day.They have understood that so I don't feel guilty if I can't go.That helps a lot. That was a great list you provided also about neuropathy.I obviously can't emphasize enough about avoiding warm/hot water on your hands and feet.

    Jlstacey,I so wish you could find something that would help with the nausea.That really seems to impact you.Hopefully you can hydrate a bit more to help with the dizziness.

    Brandi, I was hoping you were going to say the problem had resolved but I sort of felt that wouldn't be the case. Bah!!! I can see how deep this PPE is on my feet and it makes total sense that the blisters need to work their way through. I have a feeling this will continue to be a problem for quite some time unfortunately. On the dizziness issue, I'm wondering if the taxane chemos like Taxol and Taxotere dry you out even more.I have continued to drink about 10 to 12 cups of water a day but I have noticed that I still feel dry.Not sure what the solution is but thought that could be contributing to the dizziness you are feeling?

    I don't want to freak everyone out but I will post a picture of my feet for now so you can see the damage.It doesn't look too bad yet!!

  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Hi, Everyone! Hope you all are ready to enjoy a warm, Spring weekend.

    Beachbum, I love, love, love your bloodwork results. Happy dance indeed!

    Kristin, Thank you for the good info. Are you able to keep up with your studies?

    Jlstacey, they can't see any EF changes on the bloodwork you have done when they check your WBC. They do a follow up Echocardiogram and different blood work if MO suspects a problem.

    I now have lymphodema. Geez, when will this end. I will start PT and be fitted for a sleeve and glove. How do I wear those in this steamy South? My Muga is not 'til Tuesday. The office staff dropped the ball and did not schedule it, so I had to do it myself this afternoon. I'm waiting for Radiology to schedule a talk with me, 'cause now with the Lymphodema and heart location under tumor, I definitely don't want Rads. But a BMX now is out of the question because it cuts off more lymph paths and on both sides. Any suggestions? I'm ready to dig a hole and crawl in until someone comes up with some good news. I am so screwed.

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015
    image

    The damage is on the heels where it shows sort of white and the pads of my feet (both red and white patches) and part of the big toes (still just red). The foot on the right above has it running up the side (red patch) as well.

  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Yikes! Wendy! Is the white fluid like a blister? Will it be reabsorbed or will it work up to the surface? I am so, so sorry you and Brandi are going through this.

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    Sweethope, I am sorry you are dealing with all of these complications. A simple thing of scheduling a MUGA shouldn't be a difficult thing for the office staff to follow through on. Very disappointing.

    I can see the LE would be a huge concern with a BMX but do they have to take so many lymph nodes if they do? Maybe RADS could give you the least long term effects? What about just going on to hormone therapy?

    Sending you a big hug!

    Wendy

  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    On my feet it is not a blister yet but I suspect it could blister if I'm not careful! I think they are going to be tender for a long time!

  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Wendy, from what I learned at the screening, the lymph system for the breast runs like numerous rivers from the belly button up and across each breast then down each arm. Since a BMX takes all the breast tissue, it would cut off the rivers and remove all the lymph nodes which are embedded in the breast tissue.

    I definitely want the hormone therapy. If the Muga is favorable, I would like to finish Chemo.

    I hope your feet don't keep you awake. Hugs right back to ya!


  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Brandi, Wendy, and SweetHope, I am so so sorry for all these crappy side effects! After hearing about the issues with feet, toes, hearts, nodes, breasts, hormones, and chemo I just want to scream! It is a never ending crap storm for sure. It is so hard to navigate this jungle, and hopefully find the one big thing that may work for us, without leaving us in a hot mess. It is exhausting! I am still chasing the runny nose and neuropathy. And the weight gain, that is making me crazy. I have to say we are a tough bunch, and we just keep on going through it all. I hope that you all have a pleasant weekend. Then we will give it a go another day.

  • Brandi999
    Brandi999 Member Posts: 143
    edited March 2015

    Sweethope and RV6gal and all of us... I'm SO glad we have each other. How could we even deal with all of this without each other who actually get it? UGH! I just want to hug you all.

    RV6gal, I'm just going to be honest here because that's all I know how to be. Your feet look a lot worse than mine did. Keep them slathered in Aquaphor and don't walk unless you absolutely have to. I can pretty much guarantee that there are blisters under there that will come out like mine eventually. That looks very painful! The good news is that by the time they look like mine, there's no pain. I cut the skin off my big toe and underneath was healthy pink skin and it didn't hurt at all. It was totally healed. I had to cut it off because it was partially off and making a snag. I can't handle skin or nail snags. That's my weird thing. Snags freak me out, as well as snaggy material. The skin on the pic is still nice and smooth so I'm leaving it alone until it decides to come off on its own.

  • SweetHope
    SweetHope Member Posts: 439
    edited March 2015

    Brandi, I know! I come running to you all with my crappy news. My family listens but doesn't get it.

    Beachbum, Ditto! And I keep beating myself up about this weight gain, too. I gladly take the steroid shots because I know their benefit. But after seven shots in four months, and this ravenous appetite, I sure hope I can get rid of these pounds.

    Wendy, Can your MO postpone a chemo treatment to give your feet recovery time?

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