Neuropathy - Chemo Decision

markatger
markatger Member Posts: 314
edited March 2014 in Colorectal Cancer #1
Hi all,

I have completed 11 rounds of FOLFOX spread out over the last year in between 2 surgeries. I am finally getting neuorpathy in my feet. It is pins and needles sensation when I move them or put pressure on them as when walking. Also more disconcerting was a cold sensation I got on Sunday. My feet felt cold even though I was taking a shower and standing in very warm water.

I have a family history of inherited neuropathy. My Aunt and Grandmother both developed. neuropathy in their sixties for unknown reasons - they both had not had chemotherapy. My grandmother was in a lot of pain at the end of her life from neuropathy. My father would find her soaking her feet in scalding water because they felt cold to her (even though they weren't).

Remebering my father telling me about this, has gotten me concerned about my developing neuropathy. I'm of course going to be talking to Doctor on Thursday. I am wondering how my possible genetic susceptibility to getting neuropathy later in life and induced neuropathy from chemo can interplay to make things worse for me.

I am seriously considering not doing the final 12th round of chemo. I'm trying to weigh cost of possible neuropathy problems against insurance against cancer recurrance. I was likely stage III rectal cancer.

I am going to be looking into supplements to heal the neuropathy. I've heard of glutamine, B vitamins, and lipoic acid. There is a lot of info on the net about neuropathy, but I'm unsure how much applies to chemo induced neuropathy verses inherited neuropathy.

Any input would be appreciated. : )

Thanks a bunch!
Maria

Comments

  • nanuk
    nanuk Member Posts: 1,358 Member
    I would seriously consider quitting Folfox; my doctors won't give it to me due to my neuropathy,
    which hasn't gone away in two years. Bud
  • jana11
    jana11 Member Posts: 705
    I tend to agree with Bud. Talk to your doctor about their rec, but it all balances on benefit vs. risk. If your life is miserable - neuropathy - the chemo isn't worth it.

    FYI: your family history of neuropathy may be completely different. Did either of them have diabetes or peripheral vascular disease? Certain conditions cause neuropathies. Talk to the doc to get more information.

    Good luck - and congrats - either way, you are almost done with chemo!!!! HURRAY! jana
  • NanD
    NanD Member Posts: 58
    I had the neuropathy from the very beginning of the folfox treatments, but the symptoms would go away before the next round of treatment in two weeks for the first half twelve cycles. After that, if diminished before the next treatments, but never completely went away. My doctor gave me the option of skipping the oxaliplatin for the last few treatments, but I chose to plow ahead. (I was stage III c with 13 postitive nodes). Ten months later I still experience mild neuropathy (numbness in hands and feet, cold sensitivity, occasional pain) and drop things. However I can do all the things I need to do and am only inconvenienced by the symptoms. It really is a toss up. So far my CTS and colonoscopies are clear. But, they probably would have been even without the last doses of oxaliplatin. If I had to do it over again, I would have quit sooner.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Hi Maria -

    I would talk to your doctor, but also consider that you are on "adjuvant" chemo. 12 cycles is pretty standard because, as I understand it, they don't have any way of telling when "best response" is achieved. With us Stage IV types, they typically give chemo to achieve "best response" which they can observe by watching mets on PET and CT. So the irony is that many of us with "more serious" disease actually end up with less chemo. I had 6 cycles for example and things look good - so far.

    I'd talk to your doctor first. But if you decide to forgo the 12th treatment, I think it is most likely to mean nothing in terms of your long term recovery.

    Good luck.

    Betsy
  • taraHK
    taraHK Member Posts: 1,952 Member
    I ended up doing 11 rounds of FOLFOX. The toxicity just seemed to reach its limit point. My oncologist told me there is no solid evidence that 12 is better than 11.
    Three months after my chemo ended, I still have neuropathy in my fingers and toes. I'm hoping that it fades eventually. But, it is not a big problem to me as it is now. I take a lot of hot baths, to warm my toes! And I wear socks 24-7. Best wishes.
  • spongebob
    spongebob Member Posts: 2,565 Member
    Ahoy, Maria -

    I won't say one way or the other... what I will say is I would talk it over with your onc, weight the pros and cons and then listen to your body. No doubt those mental images of your mom and grandmother must weigh heavily on you.

    Be sure your onc knows your family history!

    Be well...

    SpongeBob
  • sam991
    sam991 Member Posts: 16
    My understanding is that the nerve damage caused by oxaliplatin is cumulative so another session is possibly going to make the neuropathy worse and increase the odds that it will never go away. But of course you need to discuss with your onc. I think I would have skipped the 12th session if I had known the neuropathy could come back even after chemo ended. I still have it 11 months later but of course I don't know if it will go away in another few months. Good luck.
  • markatger
    markatger Member Posts: 314
    sam991 said:

    My understanding is that the nerve damage caused by oxaliplatin is cumulative so another session is possibly going to make the neuropathy worse and increase the odds that it will never go away. But of course you need to discuss with your onc. I think I would have skipped the 12th session if I had known the neuropathy could come back even after chemo ended. I still have it 11 months later but of course I don't know if it will go away in another few months. Good luck.

    Thank you so much everyone for your help!

    I see my oncologist tomorrow. I'm leaning towards not doing the 12th chemo tomorrow. It's kind of a scary decision. Its just one chemo, but still anything to improve my chances I want. Arrgh...

    Maria