IBC and IDC and triple negative

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Susanhf

    Good luck with the second opinion If you have any luck I will certainly try to so do keep us informed, they told me if xeloda does not work I have 6 months to a year at most. Re the Xeloda how many rounds have you had? I have had one and the rash has continued to spread, not too optimistic but not letting it get me down too much either have to stay positive, but is getting harder. I have been given a steroid cream by my GP it helps a little, I will try the other too. Thanks

    Good Luck T

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  • Danni1
    Danni1 Member Posts: 57
    edited June 2011

    Hi Tek2009 and twinkied,

    I have IBC and am triple negative too.  I responded really well initially to ACT and had a double mastectomy and rads.  They thought they got it all but it came back and is now on my liver.  I have tried the iniparib trial which didn't work and then xeloda and taxane which caused huge mouth sores and wiped out my white blood cells. I had to stay in the hospital for a week just to get my wbc's up enough.   I met with the oncolgist yesterday and he said without chemo he expected me to make it 2 to 4 months.  The xeloda was too much for me so I'm not going to do any chemo for a while and recover my strength.  After that, maybe I'll start with taxane again.  I plan to beat the odds.  Hope you both can keep on the xeloda. 

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Hi Danni  am really sorry to hear about your experience with the treatment and the prognosis, I had the real problems with the taxol first time round so they do not want to give me that again. Xeloda is not feeling like its working. Anyway will keep my fingers crossed for you.

    T

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited June 2011

    Hi,

    Yes, please stay positive!  I know it's difficult sometimes.  Everyone responds to chemo differently, but if you noticed it was not working, please holler at your onco to change med as soon as possible.  IBC is not something you want to wait and see.

    Twinkied: sorry for the late response!  I've been doing well, 5 days of radiation left, my skin has been holding up well so far. Xeloda does give me numb fingers, but not bad.  Only strange thing is mild knee pain like arthritis, they are fine if I don't put any weight on them.  Hope it is some strange side effect from Xeloda.  Will ask my onco next week. 

    I hope you find relief and root cause for your leg pain soon.

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  • Susanhf
    Susanhf Member Posts: 24
    edited June 2011

    Leslie, Tek and Danni, I, too have some slight hand numbness..my handwriting has deteriorated, but it is a small price to pay if Xeloda continues to work. Taxol gave me such neruopathy that my onco cut it short. Also, joint pain was unbearable with Taxol. Anyone with pain issues might get the doc to prescribe lidocaine pain patches. Can't go on IBC skin, but patches aren't irritating to normal skin. Danni, could your dose of Xeloda been too high? Have you had neulasta for wbc? Also, leg pain could be relieved by a competent massage therapist.

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  • twinkied
    twinkied Member Posts: 28
    edited July 2011

    Hi Leslie,

    I know I have not posted in a while.  You should be done with your treatments right??  I hope it went well.  It has been some time because I have been in the hospital for the last 8 days :(   Unfortunately they believe my cancer has already metastisized.  Can you believe it!!!!!! Oh well, what can you do?

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  • TEK2009
    TEK2009 Member Posts: 62
    edited July 2011

    Hi again reallly sorry Twinkied I believe mine had gotten further too. It just is I guess.

     Anyway have been busy trying to avoid it, well sort of I have friends visiting and between them and squeezing in lots of hospital visits to find out what might work now if anything have not had a chance to post.

    Well met with a new consultant at same hospital who described me after examination as having "erythemateous and inflammatory skin disease" does anyone know if this is finally IBC?

    Thanks T

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited July 2011

    Hi Twinkied,

    I'm so sorry to hear you were in the hospital for 8 days and possible metastasis!  What happened?  Did they find the root cause of your leg pain?  Was it from your belly area as you suspected?  Are you feeling better now?  Sorry for so many questions.  Did you go back to Fox Chase and see Dr. C?  I just don't understand, your path report was so good.

    Yes, I finished with radiation treatment last Mon., did a little dance with a retired Catholic priest in the waiting area ;-)  My skin is in the process of renewal, painful at times, but bearable, lots of sudden 'singing' from me.  I finally understand the 4 weeks wait.  My onco only wanted MRI before surgery, with your situation, I might ask again for PET/CT scan to be sure there is no other possible cancer area brewing.

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited July 2011

    Hello TEK2009

    I saw your posting and looked it up in my medical book. It states:-

    "erythema

    A term meaning redness of the skin. Disorders in which skin redness is a feature include erythema multiforme, erythema nodosum, erythema ab igne, lupus erythematosus, and erythema infectiosum (also know as fith disease).

    Eryhema can have many causes, such as blushing, hot flushes, sunburn, and inflammatory, infestive, or allergic skin disorders such as acne, dermatitis, eczema, erysipelas, rosacea, and urticaria."

    Hope this helps.

    Sylvia

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited July 2011

    Hi Twinkied:

    Hope you are feeling OK these days, please stay positive.  You are in my prayers!

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  • twinkied
    twinkied Member Posts: 28
    edited July 2011

    hi leslie,

    sorry 4 late reply. back in hospital, been here over 2 weeks :(  mets everywhere!!!!! i have not been able to travel to see dr. c but local onco called him and they agreed to try chemo drug halevin. hoping for good results.  maybe a clinical trial down the road.

    ;

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited July 2011

    Hi Twinkied,

    Don't be sorry, I'm so sorry to hear the progression.  Hopefully, they can start Halaven ASAP and you get good response to this chemo soon.  I can 'hear' your fight mode, hang in there!  Stay positive!

    I just got home from surgery.  The surgery went well, the skin was clean.  How funny, we wrote to each other when the other person just got out of surgery.  Waiting for the path report.... 

    You are in my prayers!

    Leslie

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