Not doing good

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Tychad
Tychad Member Posts: 65

hi. In the hosp since Friday. Can’t breathe on 100% high flow oxygen might have pneumonia or some with my lungs. I might stop the in Chemo. But if I pull out of this my oncologist wants to put me on xelodia. Any help or thoughts how good this pill is. I think either that or next step is palliative care. Thanks for your help and letting me vent. Scared to die but on the other hand can’t live like this on this oxygen can’t get out of bed or do anything. Thanks Rhon

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited January 2019

    Xeloda was amazing for me! Started beating back the cancer straight away, and I didn't have much trouble with the hand/foot stuff.

    You are in the hospital, being carefully monitored. Sounds like you are in the right place, getting the right care. Oxygen hunger blows though. If it starts messing with your head too much, they have medications to relieve the anxiety.

  • EV11
    EV11 Member Posts: 127
    edited January 2019

    Rhon--

    So sorry that your are struggling right now.

    I hope that your pneumonia or whatever is going on with your lungs gets handled quickly--and then I would say definitely give Xeloda a try before deciding to forgo any more treatment. I've been on Xeloda only for 5 months, but am having a good (although admittedly not spectacular) response. I'm stable, and my labs and tumor markers are slowly falling ... I'm on 3000 mg/day, 7 days on/7 days off. The 7/7 schedule greatly reduces the side effects without sacrificing efficacy (a trial comparing the 2 regimens done a few years ago at Memorial Sloan Kettering reported near-identical results from the 2 regimens, and there was far fewer side effects and far fewer patients getting off the treatment due to poor tolerance/side effects.)

    So if your onc wants to go with the more traditional 14 days on/7 days off, you can certainly try that, but be armed with the knowledge that you can dose reduce at any time if the side effects are hard for you to tolerate. There are also some people on 1000 or 1500 mg/day every day, without a break, so there are lots of options with this oral chemo. It's great for that.

    The Xeloda thread here has lots of good information about it, so browse there and you will see that many of us are tolerating it well.

    I hope you get to feeling better very quickly. Let us know how you fare and what you decide to do.

    Elizabeth


  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    I hope they've been able to get a handle on things and that you're feeling better! Xeloda sounds like a good choice. It's easier than "hard chemo" but still works well.

  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    Praying for a turnaround for you! Xeloda is my "favorite" chemo treatment, preferred over any hormone therapy, targeted therapy or other treatment. I would have been happy staying on it forever. My liver was 70% mets when I started and by 3 month PET, all lesions were inactive and shrinking. My liver has never been nearly as bad since Xeloda, despite several progressions since then. I took it for 14 months 2016-2017. I suspect it gave me an overall survival benefit. If you have the chance, definitely try Xeloda. It is a powerful drug with minimal side effects. Note that my tumor markers, liver enzymes and alkaline phosphatase did rise the first 4 months on Xeloda - tumor flare. As mentioned, during this time, my PET revealed all tumors were inactive and shrinking. Thus, don't necessarily worry if your markers / bloodwork rises when you start Xeloda. A scan is needed to know for sure what is going on.

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