Folfox cycles

catherine58
catherine58 Member Posts: 92
edited March 2014 in Colorectal Cancer #1
I just wondered what the view is in the US about the number of Folfox cycles one should ideally complete? I am scheduled to have 12 but my oncologist told me yesterday that he would be quite happy if I only completed nine or ten (especially if the neuropathy is bad, as I would be increasing my risk of permanent nerve damage). There is about to be a clinical trial here (in the UK) in which they will be reducing the number of cycles to six, which my oncologist thinks is probably too few but, as he said, "we just don't know". I gather the number of chemo cycles for breast cancer has been reduced over the years (from 52 to 18 weeks, I think he said) without affecting survival rates.

Catherine

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    Catherine,
    WOW! An MD who is honest...quite refreshing!!! Yes, breast cancer chemo is down to 8 rounds...yea for we who are lucky enough to encounter the beast more than once...

    I know many folks that can't get thru the 12...usually around 8 to 10. They are NED...

    Hugs, kathi
  • JADot
    JADot Member Posts: 709 Member
    #3
    Hi Catherine,

    I had a second opinion on this precise topic from UCSF. They said that the first 3 months worth of it is critical, you really want to get at least that much in. That makes ~8 cycles. I had 8 before having to stop Oxaliplatin, but whent on with 8 more infusions of just 5FU.

    I think the "we just don't know" is the honest truth.

    Cheers,
    Ying
  • sam991
    sam991 Member Posts: 16
    #4
    There are several treatments under the name Folfox and the key component as far as neuropathy is oxaliplatin and the dosage you receive which of course is a stage related thing. Mine was 85 mg per sq meter for example (12 doses) and I have mild symptoms (numb feet and hands) 26 months later. I received infusions of calcium and magnesium from about half way through which at the time was being tried as a neuropathy preventive so you could ask about that. I believe my age (65) and prior history of smoking and drinking made my neuropathy worse because of nerve damage. The neuropathy became constant a month *after* the treatments were completed BTW so watch your symptoms carefully if they start to stretch from session to session so perhaps a hiatus can be made.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    My understanding is that 12 is standard. But it is true that many do not complete all 12. I finished 11. My oncologist said there was no research on whether, for example, 12 was better than 10. I'm now on folfox + avastin. Again, a planned 12 txs. But my onc said he'd be happy if I finished 8-9. He thought I'd have a rougher time as I'd had oxaliplatin before. I've finished 8 now and doing well -- we'll see how far I get. Some neuropathy. My experience last time was that the neuropathy faded almost completely after 12 mos. Toes still a little strange but not painful. I used B6 for that. Not sure if it helped or how much.
  • scouty
    scouty Member Posts: 1,965 Member
    #6
    Great question Catherine and I hope you are doing just great with all of this. I send my love to you and your 2 younguns (that's what us southerns call young children). When I was getting chemo every 2 weeks there were a few times I wanted to delay or move up the treatment a few days to attend weddings and other important things. My oncologist would always weird out on me (I got my Folfox on a Thursday which meant I had my drip over a weekend (wish it could have been earlier in the week but I didn't have that choice). I remember asking my oncologist if he thought the durn cancer cells could tell the difference between a Tuesday and a Thursday! He couldn't answer and I ended up getting treatments when I wanted them and so far I have done just fine. Trust your gut and listen to your body as far as to how many treatments you have. It will tell you. Mine sure did.

    Hugs to you across the pond and keep us posted.

    Lisa P.
  • kmygil
    kmygil Member Posts: 876 Member
    #7
    Hi Catherine. My onc scheduled me for 12, as well, but I only completed 9 as the side effects were getting to be too much. It is 2 1/2 months since my last dose, and I have rather severe neuropathy and bone pain. My onc said that the 9 treatments were fine for me, and that the benefit I would gain from the last 3 did not outweigh how sick I was getting from the treatment. Everyone is different and has different tolerances for different things, so I would try to complete as many as possible while balancing against side effects. Good luck with everything.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #8
    Hi Catherine -

    Interesting question. I had Xeloda/oxaliplatin/Avastin (sometime called Xelox plus Avastin). That is nominally on a 3 week cycle (you take the Xeloda pills for 2 weeks starting day of infusion and then one week off) - though once I went 4 weeks and once 5. I "only" had 6 cycles and then we took a "break" - supposedly just for a couple of months in winter, but I've been NED ever since. I don't know how my dosages compared to a typical 12 cycle FOLFOX treatment - my oncologist made some obscure comment about it all being in the definition of cycle and that 12 "cycles" of FOLFOX wasn't really any more than 6 cycles of XELOX - I didn't pursue the conversation since she was busy and I just asked out of curiosity.

    I am Stage IV and I am sorry I can't remember if you are III or IV (chemo brain?), so I am not sure if staging makes a difference. The only good thing I have to say about Stage IV is that PET and CT scans can report on chemo progress, while with earlier stages the scans can only tell you that no metastases have appeared (which is great news of course). A warped way of looking at things, I am sure, but it kept me going thru chemo.

    Anyway, good luck and I know many people never get through all 12 and do fine.

    Take care,
    Betsy
  • KierstenRx
    KierstenRx Member Posts: 249
    #9
    Catherine,
    I am on FOLFOX plus Avastin. My oncologist originally was going to have me do 12 cycles. However, due to a fabulous pathology report after surgery he decided to cut it to eight. I asked him if that was going to be effective enough and he assured that it will. He said protocols on treating rectal cancer are changing all the time. I just completed number 5 yesterday and can finally see the light!!!!!!

    Kiersten
  • crg123
    crg123 Member Posts: 80
    #10
    I, too was scheduled to have 12 cycles of FOLFOX for my Stage 3 colon cancer. Because of increasing neuropathy symptoms (difficulty walking, buttoning a shirt, using a pen) this treatment was stopped after 9 cycles, and I was put on Xeloda (oral) for 2 more cycles (2 weeks on, one week off per cycle). My oncologist seems happy with this. I've read on the Sloan-Kettering web site that they are currently using 9 treatments as their standard. Things are changing so fast in the field of oncology. We just have to put our trust in our doctors. Ultimately we're all in God's hands.
    Peace! CRG

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