Chemo treatment experience /help

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  • Tinah
    Tinah CSN Member Posts: 6 Member
    #22
    https://csn.cancer.org/discussion/comment/1720810#Comment_1720810

    You can try wearing cryo-mits during your oxalaplatin infusion. UCSF oncologist recommended to me. I ordered from Amazon and wear on hands and feet. My neurotoxic affects on feet are almost nothing…hands only trouble me when handling freezer/fridge items. No pins and needles sensations when computing or other activities.

    https://www.amazon.com/gp/aw/d/B0D6VVBQQF?psc=1&ref=ppx_pop_mob_b_asin_title

  • Tinah
    Tinah CSN Member Posts: 6 Member
    #23

    CRS is extensive surgery, for sure. I agree that it should only be done at a large university teaching center that specializes in such surgery. Your surgeon must perform this surgery frequently to be proficient. I was told that this can extend life (I have stage 4 so CRS is palliative) 41-48 months. And that after completing my FOLFOX 12 cycles I can expect perhaps a year without evidence of disease during which my surgeon says to enjoy life and do all I want to do. I will take this for sure…peritoneal mets is sometimes called a “death sentence” so now I can enjoy an improved and extended quality of life with my family and friends. CRS can be repeated (with some caveats) when mets appear again. Also, I have a possible option for future HIPEC. The recovery time was just about 2 months to resume usually activities and be pain free.
    All that being said, my next CT imaging is in 3 weeks (following post-op FOLFOX cycles 5-8). My peritoneal mets were not well visualized on prior PET (PCI score 18 identified during CRS) so my oncologist mentioned high intensity CT. This will let me know if in fact the optimistic predicted timelines are still possible. I really want to be clear for now 🤞🏻

  • bibliophile
    bibliophile CSN Member Posts: 25 Member
    #24
    https://csn.cancer.org/discussion/comment/1723076#Comment_1723076

    I mean, I am still hoping for not the worst case scenario when I see my doc about the CT and SIgnatera results, but it doesn't look good. I have teenagers/young adults so anything I can do to give me more time is worth looking into. My oldest is getting engaged in two weeks and my 4th just graduated from high school, youngest will be a junior. I have a lot I still want to be around for. 😊 Best wishes on your next scan! Thanks for your response.

  • Tinah
    Tinah CSN Member Posts: 6 Member
    #25

    Good luck on your results. The only (and I mean ONLY) good thing about cancer is that you know it is there and that the time you have is precious. CRS is life extending as are other treatments. Your kids deserve every single moment with you. Celebrate your times, both everyday and special occasions. (I am taking my 3 adult kids (and their families) to Hawaii (first class airfare even!) for Thanksgiving. Not to say that you need grand gestures…just saying my time is limited. Fortunately, you are stage 3 and have more options. God bless

  • bibliophile
    bibliophile CSN Member Posts: 25 Member
    #26

    Thanks. Enjoy Hawaii! My in-laws took us at New Year's. It was an unforgettable experience and so many great memories and pictures. I am so thankful.

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