Change the chemo mix?

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FloridaLady
FloridaLady Member Posts: 2,155
edited June 2014 in Triple-Negative Breast Cancer

Saw my doc today, and told him that the Carbo has really advancing my preexisting neuropathy really fast.  He said, he wanted to do one more...Hey! not me.  He said, he had to do one more with Gemzar & Avastin and than we need to do a PET scan before we can change out the Carbo.  We will keep Gemzar, Avastin and add in Xeolda.  All I can think of is, bad neuropathy of the hands and feet and now add in the side effects of Xeolda. The big one... hands & feet syndrome.  I need to work!!!! And I live alone; I need to be able to drive !!!  I can hardly drive now!

I can't believe it, he wanted to discuss doing rads again on both sides of my chest wall. No thank you...I had my first recurrence of IBC one week after finishing a very aggressive rads protocol.  This did not help me the first time, what has changed?  I know he is trying to keep me from moving to bone or organ mets with out doing a lot more chemo because of my neuropathy.  But this?????

Ok...I'm done venting for now.  He said, I have stayed one step ahead of TN research.  Now with the neuropathy this bad...he is limited on we he can do.

Flalady

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  • CalGal
    CalGal Member Posts: 469
    edited July 2008

    FlaLady -

    Sorry to hear your neuropothy is bad and threatening your functioning/independence.  I don't know, but I've read a number of posts that suggest B-6 and L-Glutamine for Neuropothy.   You know I'm a big fan of the hypothermia products (see www.elastogel.com, then go to cancer products).   I've used these products while on Taxotere & Carboplatin, Carboplatin and now Avastin, Abraxane, Zometa & Gemzar and no neuropothy!!Smile

    I know not everyone gets neuropothy or nail-lifting, but my mom suffered with both.  

    As for one more Carbo or not ... sounds like that's a difficult decision.  As a trip neg, I'm concerned with using up my treatment options, so want to maximize them.  

    As for the rads, would they be doing them on the exact same area?  Aren't there some hazards of that  (2nd series of rad'tn) on the same location?

    Hope you find a good option.

    CalGal 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2008

    CalGal,

    I was given a dose of a new chemo Aroplatinum that was 3 times the finally dose approved while a MD Anderson.  I was completely crippled from my wrist down and from my knee's down for six months.  I was so bad I had "palsy hands".  I could not drive for over 6 months. (my co-workers pickup me up and took me home everyday and I live in a different city.)  I was just getting back to were I could type and do small motor skills. 

    I did use ice the last two treatments.  I had read about you using the frozen gloves.  I will look this up online.  I had rads on my right chest wall from the top of my neck to the top of my liver, under my breast bone and half way around my back the first time.  I would not let them do rads on my left chest wall.  But to answer your question..yes they want to redo where I had rads on the right.  Your right there are big concerns about doing this twice. I was trying to get approved for cyberknife just before I got skin mets again.  That got thrown that out the window.

     I do take a B-complex daily and lipoic acid, also something has helped me a lot is, Electro Acupuncture.  This is something like Tens therapy you get at physical therapy. This sends tiny electric shocks through the muscle and nerve endings. This is like using a large writing pen. A big part of the pain and loss of balance is muscle damage from poor balance and the way we walk with our gate wrong.  This and a hard massage of the hand and feet helped me the most.

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2008

    Flalady,
     
    You are in the drivers' seat here. If you decline another round of Carboplatin because of its potential to impair your livelihood, well then you do. Neuropathy limits in such a big way, even doing the smallest of tasks, let alone the big ones.
     
    Likewise on the radiation. If you're against it, then that is that.
     
    Not everyone gets hand foot syndrome from Xeloda. You may be one of the lucky ones who doesn't. Being an oral agent which you can learn to titrate dose down partially to it's side effects, please try to stay open to it. 
     
    You've had a long day. Sleep tonight on what your oncologist said. He's stood by you throughout: he'll stand by you again with your decisions, helping with movement to an alternative plan.
     
    Please feel our ((hugs)) tonight. Post when you can. I'll be thinking too..
     
    With great affection,
    Tender 
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  • ibcspouse
    ibcspouse Member Posts: 613
    edited July 2008

    Flalady

    Cam is also on Avastin, Carpo, and Gemzar.  This after five tx of TAC plus Avastin seemed to be reducing the breast tumor in left breast, not so much in right breast, and srinking the ovarian cancer, but the skin mets would go away for a week of two but come back before next treatment.  Tried Avastin weekly, but did not do any better.  The Avastin carpo gemzar has knocked the skin mets way down (they were so bad that she could not have a port, no unaffected place on chest) and she now has a little bounce with her walk,  before she referred to her breast as rock hard stripper boobies,  no neuropathy but zero energy, body and bone pain, increased nausea.  She's mad because the last six eyebrow hairs came out and no eyelashes but loves not having to shave her legs. Will know more with pet scan after next tx.

    Sorry to ramble on, I just wanted to say I am impressed by the command of your disease that you have taken, the research you and others here have done to know what to ask and require of your doctors,  Sorry that you are having trouble with your neuropathy, but I have faith you will work it out.  You are indepentant but you will never be alone.

    spouse 

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