More questions re: Folfox

catherine58
catherine58 Member Posts: 92
edited March 2014 in Colorectal Cancer #1
My oncologist has just returned from the ASCO conference in Chicago saying that from now on all his patients will be doing nine cycles of Folfox as standard, instead of 12. He said that at the conference there was a presentation on Folfox which showed that the survival benefits of Folfox were still present at six years for Stage 3 patients, but also that 15% of suffered from long term neurotoxicity.

I asked him whether any other hospital in the world had reduced the number of cycles and he didn't know. Does any one here have any idea? In some ways I am pleased that I will be finished with the horrible chemotherapy earlier than anticipated, but in others I am worried that it might not have finished its job. I live in the UK where most patients are treated free of charge, on the National Health Service, and I fear that this might be primarily a cost-cutting exercise. In fact they are about to start a clinical trial reducing the treatment to six cycles. On the plus side, I suppose the fact that Oxaliplatin was recently approved for use by the NHS must mean that they think it works (a lot of expensive cancer drugs do not get NHS approval).

Another question ... Has anybody else felt a bit breathless while on Folfox? I am being sent for a CT scan to determine the cause of my slight breathlessness (my haemoglobin counts are near normal) and I'm now in a spin imagining lung mets (my scan was clear in March). I still manage to walk several miles a day during my "good" weeks, so it's not that debilitating, but I find myself puffing a bit after climbing a few flights of stairs (never did before).

Any input would be much appreciated!

Catherine

Comments

  • kmygil
    kmygil Member Posts: 876 Member
    #2
    Hi Catherine,
    I have heard of other oncologists reducing the cycles to 9 or 10. For me this makes sense, since I now have neurotoxicity even though I stopped after 9 cycles. My oncologist said that he follows the standard 12 cycle treatment protocol, but he felt that I had probably gotten all the benefit I was going to get after 9 cycles. I do trust him--he has never lied or sugar-coated information. I hope this helps.
    Take care and God Bless!
    Kirsten
  • JoyceCanada
    JoyceCanada Member Posts: 134
    #3
    Stage III rectal cancer. I was given 8 cyles of Folfox and 28 continuous FU and radiation. I was told this was the standard treatment in Canada.
    8 months post chemo I still have neuropathy in my feet. I did not suffer neuropathy to any extent during treatment it started with a vengence about 2 weeks post treatment.
  • sladich
    sladich Member Posts: 429 Member
    #4
    Catherine,

    I had 12 treatments; however, when I was on the FULFURI, my onc told me that there wasn't a set # of treatments. I'll have to ask my onc at my next appt. I have permanent neuropathy in my finger tips and feet. It progressively got worse with each treatment. I ended my FOLFOX in May 2005 and it did get better. My onc told me it would take about 6 months to improve. It did improve but not the same prior to chemo. I was definitely out of breath on the FOLFOX. I was in great shape (jogged 5-6 miles day), etc. prior to being diagnosed. The chemo just runs your body down. My legs were very weak during treatment. I stepped down from a van on treatment and went right down to the ground. After my 12 treatments it took a long time for the weakness to go away. Stay strong!

    Debbie
  • houseofclay
    houseofclay Member Posts: 63
    #5
    Previous studies showed that completing 8 cycles of FOLFOX was enough to impart the benefit of the therapy without many of the side effects, so your doctor is not making this decision based on financial considerations. Think of it this way...if 8 cycles gets you all of the benefits with fewer of the side effects, that sounds like a great deal. Feel free to email me off list if you have any other questions (aclay@ccalliance.org) as I was at ASCO as well.
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #6
    Hi,

    I did 9/12 treatments of folfox. I stopped because the neuropathy from the Oxi. It has been almost a year since chemo (in July) and I still have the neuropathy. Like Debbie it has gotten better but still not great in my feet. During chemo I was "off balance" a lot. I'm almost sure it was from the chemo. There were others that had a bad reaction from folfox of breathlessness. I'm glad they are looking into this for you. Maybe see if they can lower the dosage until you finish the cycles? I know that I'm not in great shape now so do get breathless easy so can't help you on that. LOL. HUGS and I'm sure others will chime in.

    Lisa F
  • Kanort
    Kanort Member Posts: 1,272 Member
    #7
    Hi Catherine,

    I finished the 12 cycles of oxaliplatin in 04. I was lucky and have no lingering side effects. A friend of mine has been recently diagnosed with rectal cancer and was told prior to her surgery that she would have 9 cycles of Folfox. During her operation, cancer was discovered on her urether and her treatment plan was changed from 9 cycles to 12.

    Please try not to worry about lung mets, I think the breathlessness would be due to the chemo. Please keep us posted.

    Hugs,

    Kay
  • DeeP
    DeeP Member Posts: 1
    #8
    JoyceCanada said:

    Stage III rectal cancer. I was given 8 cyles of Folfox and 28 continuous FU and radiation. I was told this was the standard treatment in Canada.
    8 months post chemo I still have neuropathy in my feet. I did not suffer neuropathy to any extent during treatment it started with a vengence about 2 weeks post treatment.

    I have completed 4 cycles of Folfox and 5 FU.
    Beginning in two weeks, I will be doing 6 wk continous radiation along with the 5FU. I am worried that this treatment is basically going to have me wiped out for 6 weeks. I asked my onc if I could just do radiation but he advises the 5FU enhances the radiation. I'm really nervous about doing both treatments at the same time. Appreciate any feedback.

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