Change in chemo

Denise1966
Denise1966 Member Posts: 90
edited March 2014 in Colorectal Cancer #1
Hi everyone,
I haven't posted in a while, just trying to get through this chemo, I finished my 6th folfox treatment last friday and today I met with my oncologist. Since my neuropathy is getting worse and worse, he has changed my treatment and taken me off the oxi, I'll only get the leucovorin and 5-fu. I was hoping to finish as many treatments as possible to get the max benefit and I guess 6 was my limit with this. Has anyone else cut short their treatment short? I'm just nervous about this change and would like to hear other experiences with this. Thanks and I hope everyone has a Happy Thansgiving!!!
Denise

Comments

  • pamness
    pamness Member Posts: 524 Member
    #2
    Being taken of the oxaliplatin
    I was taken off oxaliplatin after my fifth round, the neuropathy was getting worse and wasn't going away. I was nervous, but finished the last three rounds with 5FU and leucovorin - the standard treatment for many years. I did surgery first, chemo next and radiation last. I finished radiation with 25 days of radiation and 5FU/5 days per week. They skipped the last three days, I was pretty sick and tired by the end.

    I am currently 16 months ned and got a clean scan today. I was Stage IIIA with two positive lymph nodes, colon cancer.

    Many people have their treatment "customized" when I asked my onocologist about it, he told me that they know how much is enough but no one wants to volunteer for the trial to see if less is better.

    You are not alone, and many people have done well without the oxaliplatin. I believe that my body decided - enough!! My oncologist believed that my risk of recurrence did not outweigh the risk of permanent neuropathy in my hands and feet. It went away quickly in my hands and it took about 6 months in my feet.

    I was very nervous about stopping, but so far so good,.

    Happy holidays,

    Pam
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #3
    Happy Thanksgiving
    Hi, Denise. I've been wondering about you. Missed your posts! I'm sorry about the neuropathy.Since I didn't have chemo, I can't speak to those issues, but I'm glad to hear from you and hope you have a good Thanksgiving.

    *hugs*
    Gail
  • claud1951
    claud1951 Member Posts: 424 Member
    #4
    Only 4 rounds
    Hi Denise,

    Yes..I was taken off of Oxil and Xeloda after 4 rounds and put on Camptasar and 5Fu pump for 8 rounds. The last chemo cocktail was much better for me. It was a year ago (this past Oct) that I finished chemo and am still NED!!

    Wishing you the best. Let us know how you are doing.

    Claudia
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    claud1951 said:

    Only 4 rounds
    Hi Denise,

    Yes..I was taken off of Oxil and Xeloda after 4 rounds and put on Camptasar and 5Fu pump for 8 rounds. The last chemo cocktail was much better for me. It was a year ago (this past Oct) that I finished chemo and am still NED!!

    Wishing you the best. Let us know how you are doing.

    Claudia

    Neuropathy
    I have finished my 5th round and will start round 6 Monday...Not sure when to ask about neuropathy but my feet are tingling and not stopping but when is enough. Its not a bother but how long is irreversible for it. I guess Onc will find out about this Monday...I would like to finish all 12 with the Oxill to get Max benefit and the slight neuropathy to me is worth the extra measure in trade...........
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #6
    Neuropathy
    Hi Denise,

    I managed to get through 10 of the 12 Oxi treatments but by then I finally told my onc that the neuropathy was so bad (I hadn't complained up until then) with my feet that I couldn't get around without a cane. She said I should have told her earlier because we want to be careful with how bad the neuropathy got. I told her I was more concerned with making sure I got through the treatments to give me the best chance of no more recurrence.

    She explained that the Oxipilatin is a good chemo combined with the others but by taking me off the Oxi we are not putting me in more danger. The 5FU does 3/4 of the work and the Oxi 1/4, so with the 10 treatments, I should have sufficient in my system. She stopped me after that, which meant the last two treatments were a piece of cake!

    Unfortunately, the nerve damage in my heels and neuropathy have remained and this is now over a year having been off all chemo, so maybe my body was telling me to stop earlier than we did. Hard to say.

    Hugggggs,

    Cheryl
  • Denise1966
    Denise1966 Member Posts: 90
    #7
    Thanks
    Thanks for all the responses. I know the main chemo before was 5-fu, so I hope it still works the way it used to for everyone. When I did the 5-fu with radiation before I didn't have too many side effects, mainly just diarrhea. Will I have the same or will it be worse since it is only for 46 hours? Again, thanks for any responses.
    Denise
  • pamness
    pamness Member Posts: 524 Member
    #8
    Denise1966 said:

    Thanks
    Thanks for all the responses. I know the main chemo before was 5-fu, so I hope it still works the way it used to for everyone. When I did the 5-fu with radiation before I didn't have too many side effects, mainly just diarrhea. Will I have the same or will it be worse since it is only for 46 hours? Again, thanks for any responses.
    Denise

    The 5FU alone for 46 hours
    will probably be walk in the park for you. I had many side effects with the oxaliplatin, but the 46 hour 5FU without radiation and without the oxaliplatin was actually not bad at all.

    I hope your future holds all the best for you. It sounds like you are doing well.

    Pam
  • kmygil
    kmygil Member Posts: 876 Member
    #9
    Oh yeah...
    I think it's fairly common, actually. I had to stop after the 9th round. I went marching (well, staggering) into my onc's office and announced that I was done, finished, kaput, finito, absolutely no more. To my amazement, he agreed. Like my onc said, "The point is to cure you, not to kill you." Bad neuropathy, couldn't eat or drink which lead to other problems which had my pressure down to something like 72/50, etc etc etc. Last year I read that they were or are considering taking the "standard" Folfox regime down to 9 tx instead of 12, since no one has been able to prove any further benefit after 9. You are right on time, though. It was after the 6th tx that I started wailing inside at the thought of another treatment. It all seems to catch up with you around the 5th or 6th time.

    So you are not alone. After I felt better I started chastising myself about those last 3 treatments I didn't take and telling myself that it would be my own fault if I had a recurrence. But you know, I'm over that. I did the best I could and that's all anyone can do. So don't worry, be happy, and do alternative chemo where offered. You want to live to survive this! :-)

    Hugs,
    Kirsten

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