Newly diagnosed and looking for support!

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  • Capox Dude
    Capox Dude Member Posts: 127 Member
    #22

    Like my username says, I am very glad I did three month Capox rather than a six-month infusion. I chose that path because of some very good worldwide studies showing a significant decrease in side effects, including neuropathy, by limiting treatment to three months instead of six, all the while getting the same efficacy from the drug . Everyone is different - and I did develop stage four diarrhea, which was not the most enjoyable thing, but I was able to keep my dosage up and finish the three months. I have some nerve damage in my feet, but my hands are fine. I don’t have pain I just have numbness. I am so very glad I did not do six months of that. But I did get the reaction to cold drinks and/or holding food from ox infusions. The first time it happened I literally dropped a bag of frozen food on the grocery floor because it was so painful to touch it. Drinking cold liquids was not fun either, but those things were due to the ox infusions and not the pills.

    All in all, I have no regrets for choosing three months over six months, and as my Onc said, “if the pills don’t work out, will just switch you over to folfox and no harm no foul - same drug” She was not a fan of Capox, but as she told me, it was because she could not control the drug that went in the patient when we were taking pills at home. She could control it when we were sitting in a chair getting an infusion. Her fear was that people with side effects would quit the pills (or the number of pills) they needed to because of the side effects and not tell her.

    FWIW, I totally agree with your decision to go on the trip with your family. All doctors have a subconscious cover your butt gene, and they do not want to approve anything outside of the script. To be fair they also want you to do as well as you can. I am not a doctor, and I am not giving a medical opinion, but if I were in your shoes I would go on that trip with my family.

  • kaliakobo
    kaliakobo Member Posts: 6 Member
    #23

    You are so strong and your search for all info was exactly what I did. I hope

    you are finding strength in your strength. Not sure if there’s private message on this board as

    I’m just finding this site tonight. But please message me I have a lot of info I’d love to share. As a mother of two who went through this during 2020.

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