xeloda as last resort

jeancmici
jeancmici Member Posts: 665 Member
edited March 2014 in Breast Cancer #1
Question and comments to ALL the wondeful, helpful women here.

Has anyone taken xeloda after being pretty debilitated from previous chemo etc. Remember, the herceptin gave me heart failure and I read that xeloda can also. My oncologist laid it on the line Thursday - BUT very gently that xeloda would be the next to try but he was not very optimistic because of my blood tests, tumor markers, atypical reaction to everything. Even the lesion in my left lobe of liver reappeared and joined the seven lesions in the right lobe all having a grand smorgasbord at my expense -- damn them!

I am torn between keeping on fighting or just giving in and trusting the Lord will take care of me as has always been the case - not always as I've planned but ok in the long run.

I hesitate to post this - always have tried to be upbeat and positive on this forum but some of us go on to a long and disease free life if not a worry free life and others of us die from this. I NEVER sat around and worried much about a return - always assumed I was doing all right when blood tests were okay and I felt good.

Love and thanks to ALL,
Jean

Comments

  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #2
    I tried xeloda twice. After 10 days my palms and soles of my feet blistered sooooo badly I quit it, that was back in 2002. Tried it again 2 months later, cause doc wasn't sure reaction was due to xeloda. That time tongue blistered after 4 days...phhfff needless to say I said, "forget this stuff". I mean I suffer foot and mouth disease enough without some drug making it worse. LOL
    I'm looking into Dana-Farber Institute right now for clinical trials. They've got one that uses a vaccine from your cells to tag cancer cells so body recognizes the cancer as foreign.
    Washington Post had an article today, "A Patient's Painful Search for a Clinical Trial".
    Almost 75% of clinical trials are under the control of a pharmaceutical company. By law they are supposed to list each and every trial available, but they don't. Meaning a lot of trials are not open to the general public. Wonder why?
    On a more positive note I must applaude the ACS for their new advocacy site www.acscan.org Cancer Advocacy Network. It is a start. I highly recommend at least checking it out.
    God bless.
    hummingbyrd
  • SusanAnne
    SusanAnne Member Posts: 245
    #3
    Dear Jean, I'm so sorry you're in the position to have to make this decision. I don't know anything about xeloda, but are you up to trying a new treatment? Are your cardiac issues under control now? How are you really feeling? Do you have enough reserves to maybe try one treatment? Then you'll know what you're dealing with and if you can handle it. Please let us know what course you choose. I'll be thinking about you.
    Susan
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #4
    Your question reminded me of the apprehension associated with that very first chemotherapy appointment. I was terrified. I did not want to vomit in front of a roomful of people. When the nurse said that my urine may turn red, I thought about bolting out of the building.

    However, when the first chemotherapy was complete, I was amazed that absolutely nothing seemed different. I think I expected the numbers on the wall clock to turn orange or something, or all the leaves on the trees outside to turn black. Instead, it was just a pretty normal day, all things considered, and I drove home.

    Your oncologist is aware of the reactions you have had to other medications. I think SusanAnne is right on the money to suggest that you consider trying it and seeing how it goes. You can always stop. I worry that you might spend a lot of time wondering whether you should have tried xeloda if you pass the opportunity by. You may be the one able to tolerate the drug with no problem whatsoever.
    Love you,
    Denise
  • jeancmici
    jeancmici Member Posts: 665 Member
    #5
    DeeNY711 said:

    Your question reminded me of the apprehension associated with that very first chemotherapy appointment. I was terrified. I did not want to vomit in front of a roomful of people. When the nurse said that my urine may turn red, I thought about bolting out of the building.

    However, when the first chemotherapy was complete, I was amazed that absolutely nothing seemed different. I think I expected the numbers on the wall clock to turn orange or something, or all the leaves on the trees outside to turn black. Instead, it was just a pretty normal day, all things considered, and I drove home.

    Your oncologist is aware of the reactions you have had to other medications. I think SusanAnne is right on the money to suggest that you consider trying it and seeing how it goes. You can always stop. I worry that you might spend a lot of time wondering whether you should have tried xeloda if you pass the opportunity by. You may be the one able to tolerate the drug with no problem whatsoever.
    Love you,
    Denise

    Denise,
    You're right that susananne gave me some good points to consider - Thank you SusanAnne - but as a nurse, Denise, you must know the onco was talking about an extension of a few months. I am already paid as of yesterday for the rest of July at Hospice buffalo's new small assisted living section. Some of my clothes are there but I have to take a few more days to get myself there. Everything in me wants it all over yesterday!!!!
    I toured the place - saw my room - went with friends - it is a great hotel for people feeling good - LOL! In the middle of the night they told me should I have a longing for something special to eat within reason, my wish is the 24/7 staff's command.
    I n spite of all I saw and realize, I just wanted to run out and jump off a cliff - hard to do in the flat land of a suburb - beautiful gardens all around - on the edge of a forested area - a more serene and quiet setting would be hard to find and volunteers galore.
    Thanks for listening - it's time for my happy pills - Ativan and oxycodone :-)
    Love ya, Jean
  • inkblot
    inkblot Member Posts: 698 Member
    #6
    jeancmici said:

    Denise,
    You're right that susananne gave me some good points to consider - Thank you SusanAnne - but as a nurse, Denise, you must know the onco was talking about an extension of a few months. I am already paid as of yesterday for the rest of July at Hospice buffalo's new small assisted living section. Some of my clothes are there but I have to take a few more days to get myself there. Everything in me wants it all over yesterday!!!!
    I toured the place - saw my room - went with friends - it is a great hotel for people feeling good - LOL! In the middle of the night they told me should I have a longing for something special to eat within reason, my wish is the 24/7 staff's command.
    I n spite of all I saw and realize, I just wanted to run out and jump off a cliff - hard to do in the flat land of a suburb - beautiful gardens all around - on the edge of a forested area - a more serene and quiet setting would be hard to find and volunteers galore.
    Thanks for listening - it's time for my happy pills - Ativan and oxycodone :-)
    Love ya, Jean

    Jean:

    I'm so sorry for all that you're going through and I know I speak for all of us here when I say I wish I could make it better somehow.

    From hummer's response, Xeloda sounds a powerful
    and tough drug. It has to be difficult to try and decide if you want to give it a go. My suggestion ehcoes the other's here: think it through and then decide what you think your body and spirit can handle and go from there. It doesn't sound like you have to decide right away, so you've time to learn more about it and research more. If I can help with any research, please let me know.

    And you're not coming across as negative at all.
    We're all here for you, warts and all, so don't you dare not share with us because of concerns about being negative! Negative is part of what we share here. Sharing it all, is part of what can help ease the burdens.

    Please keep us informed on what you decide to do and keep those comments, questions and attitudes coming...no matter what they are.

    Love, light and laughter,
    Ink
  • ksfc
    ksfc Member Posts: 251
    #7
    Jean, I don't have any experience with Xeloda, but I wanted to remind you of how helpful you've been to so many people here, myself included. There's no reason for you to only post upbeat messages. There's nobody in this group that doesn't know what it's like to get bad news and that's what we're here for - to support each other. I'm sorry your treatments aren't helping. I agree with the others, give it some time and thought and you'll know what the right path is for you. The place you've found sounds beautiful. Take care - Diane

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