Anyone stage 3b not all 12 chemo and still ok??

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Madre
Madre Member Posts: 123
edited March 2014 in Colorectal Cancer #1
Is there anyone out there diagnosed with stage 3b colan cancer, but only receive some of the recomended folfox chemo and still ok? I've had the surgery, and 3 rounds of folfox and 2 rounds of erbitux. Just don't know if I can get through all 12 like they want. Mentally, physically, emotionally or financially. Anyone with any feedback I would greatly appreciate it.

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  • jsabol
    jsabol Member Posts: 1,145 Member
    #2
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    I was stage 3a, but started my chemo prior to oxaliplatin completing trials. I had the traditional 5FU and leucovorin, 4 courses of treatment, 6 weeks each. My onc thought that adding the oxali later would bring minimal statistical gain with a higher side effect profile, so we never added it. I don't know the protocol for folfox, but I am still with No Evidence of Disease nearly 4 years later.
    Please have a long talk with your onc team so they understand what you are going through and so that you have the info you need to make good choices for yourself.
    All the best, Judy
  • catherine58
    catherine58 Member Posts: 92
    #3
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    I was 3b and only had nine rounds of Folfox as that was what my British oncologist recommended. In fact he said there was soon to be a trial (in the UK) with only six rounds (but, knowing our National Health Service, I expect it was cost driven!). He told me that one of the major US cancer hospitals was only recommending nine cycles (was it Sloane Kettering? I'm afraid I can't remember). At the time (a year ago) I did some research (including a post on this site) and found that did appear to be the case.

    Sorry you're finding it tough. I can't say it gets better (unless they reduce your dose - they did mine) but 10 months on I feel better than I have for years! I never had Erbitux. It was great to get past the half way point and start counting down the last few treatments.

    Catherine
  • pamness
    pamness Member Posts: 524 Member
    #4
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    I was stage IIIA and had scheduled 6 rounds of folfox - two weeks apart and 28 days of radiation with 5FU. Also I had sugery first with 20 inches on colon removed and two positive


    lymph nodes. I couldn't finish the oxalyplatin - I willing and the doctors said no. I did five rounds - each one reduced. I was sick as a dog. I did finish the 5fu and radiation. My doctor told me that they know the amount of oxalyplatin (and probably 5fu) that works very well for everyone. However, they don't know how much smaller the dose could be, because no one wants to volunteer for that clinical trial. Have a good chat with your doctors this is not an exact science. I am almost 1 year ned.

    Pam
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #5
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    Well, it is a hard decision you are going through. I had to do the same decision. I only did 9 out of 12 rounds. I was just too sick, neuropathy from oxiplatin was horrible and my blood sugar was so out of wack. This July I will be 3 yrs out from chemo and doing well. Still NED. I have neuropathy in my feet still but figure it is my new 'normal'. Good luck with your decision but the big thing is that you are comfortable with whatever you decide. HUGS.

    Lisa F
  • Madre
    Madre Member Posts: 123
    #6
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    Thank you everyone. It's so good to hear from those that have lived it. My doctor says"we just go by what happens to others" I just hate those 5 days of sleeping my life away feeling nautious all the time. The nueropothy is unpleasant to say the least. Thank you again. I'll hang in there as long as I can but at least I know I have options.
  • Kodie
    Kodie Member Posts: 7
    #7
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    I was stage 3a and had radiation and chemo before surgery. After surgery I had 12 treatments of 5fu and oxali. I did make it thru but it was the toughest thing I've ever done. On my last treatment I asked my onc if she would stop the oxali which she did. I have severe neuropathy in hands and feet. My treatments stopped April 3rd, my ileostomy reversal was May 27th, I haven't had any follow up yet but I'd like to assume I am cancer free. Please do what you can to get thru these treatments. I know how difficult it is, I hope you have a good support system around you. I found that the person that takes you to treatments is a very important person. Should be upbeat and hopeful. I just joined this site and it is already helpful. Good luck and take care.

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