Please Help - Questions About Chemo Regimen for a Rare Cancer Type

LoveBabyJesus
LoveBabyJesus Member Posts: 1,679 Member
in Rare and Other Cancers #1
Hello all--

I hope and pray you're all doing well and recover.

I come from the breast cancer forum, but wanted to share a story here. Someone I know dearly, her aunt was dx with a rare type of cancer, and she is getting treated with chemo regimen that's also used for colorectal cancer, from my understanding. Just wanted to know if any of you have tried this and what the symptoms are.Also, if you can give any suggestions as to how to prepare for it. Her chemo regimen will be oxaliplatin, leucovorin and 5-fluorouracil. If anyone has tried any of these - or in combination - please let me know what to expect so I can help my friend. Her and her family members are really scared. She was dx stage 4, with mets to liver.

Thank you all for your help.

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Visit the colorectal forum
    There is lots of info there. I had that chemo regimen for my rare cancer, but everyone has different side effects. Check out that thread and search for "Folfox". You'll get tons of info.

    Common:

    5FU - Hand-Foot syndrome; drying, splitting of skin on hands and feet, pain walking
    Oxaliplatin - general neuropathy. Super sensitive to cold, both touch and foods. Be careful. I used plastic utensils because the metal ones hurt. First bite pain is not common, but neither is it uncommon - severe pain on the first bite of food. Subsides by second or 3rd bite.

    General: nausea - get Emend or Zofran. Diarrhea is very common - keep Immodium handy (in my case, I was constipated - much less common.)

    Not fun, but an effective regimen.
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #3
    abrub said:

    Visit the colorectal forum
    There is lots of info there. I had that chemo regimen for my rare cancer, but everyone has different side effects. Check out that thread and search for "Folfox". You'll get tons of info.

    Common:

    5FU - Hand-Foot syndrome; drying, splitting of skin on hands and feet, pain walking
    Oxaliplatin - general neuropathy. Super sensitive to cold, both touch and foods. Be careful. I used plastic utensils because the metal ones hurt. First bite pain is not common, but neither is it uncommon - severe pain on the first bite of food. Subsides by second or 3rd bite.

    General: nausea - get Emend or Zofran. Diarrhea is very common - keep Immodium handy (in my case, I was constipated - much less common.)

    Not fun, but an effective regimen.

    Thank you for your respond!
    Thank you for your respond! I have posted there too and got a couple of replies.

    I hope you're doing well.
  • abrub
    abrub Member Posts: 2,174 Member
    #4
    LoveBabyJesus said:

    Thank you for your respond!
    Thank you for your respond! I have posted there too and got a couple of replies.

    I hope you're doing well.

    I'm doing very well, thank you.
    If I may ask, what is your aunt's rare cancer? Mine was appendix cancer.

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