Beyond FOLFOX, FOLFIRI any experience?

I have been through FOLFOX with avastin, FOLFIRI with avastin and now FOLFIRI with erbitux (K-RAS AND B-RAF wild type). Oxy stopped due to the neuropathy, avastin due to a perforated bowel and now with rising CEA on FOLFIRI/erbitux.

Last weeks CT's showed only a 0-0.5 cm increase in my known lymph nodes (over the part year) and no new mets elsewhere - but it looks like I will be looking for a new recipe.

Met with Mass General this week and they shied away from GEMZAR and thought mitoycin/xeloda would be a next option it I do not go onto a clinical trail. We are looking at a trial - but don't now the details yet.

Any experience or thoughts? - I am also trying to push for consideration of radiation too, but tough due to the size/bulk of my nodes and their location.

Your thoughts welcome



  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Hey Tom, I'm sorry that I

    Hey Tom, I'm sorry that I don't have an answer for you about what drug is next, but I wanted to mention that if MGH doesn't give you any other options, you might want to get an appointment at Dana Farber. MGH basically gave up on my Rick, but he got HIPEC (after it was recommended from people on this board) at Tufts Medical, and is now seeing a new onc. at D.F.. -- And now, 3 1/2 months after HIPEC, he is currently NED! :-) Dana Farber also has access to many more clinical trials than MGH if that becomes necessary - and they'll help you to get into one - unlike MGH where you're essentially on your own to find one. Good luck with everything, and best wishes, Cynthia
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    just goodluck
    Hi Tom,

    I am only on folfox6 done 7 of 12 so have no knowledge of the chemo drugs that may help.

    For what its worth I having been doing all the chemo and alternative therapies I can get my hands on, in case chemo fails.

    Have you considered either or naturopathy and traditional chinese medicine and juicing and diet ?

    I am happy to hedge my bets and put a foot in each camp at the moment.

    I wish you well and lets us know what you decide.


  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Mass Gen shy
    "they shied away from GEMZAR"
    Did they give you any specific reasoning for your situation that they shied away on gemcitabine/Gemzar? Or just "I don't know enough" since the CRC trial, that Lisa42's doctor contacted, remains unpublished. There have been other minor trials published.

    Several of us here with above average CA19-9 tests results use cimetidine for hope with the VEGF/EGFR inhibition of mets, super nutrition has various implementations, and many are shopping trials. Some medical treatments approved overseas, are supplements in the US, like PSK, or clones, (mushroom extract officially approved in Japan 1980s), or other glycans, to extend treatment odds and length with conventional 5FU drugs. Some other medical treatments approved overseas, require (legal) cross border activity, either mail or a passport.
  • taraHK
    taraHK Member Posts: 1,952 Member
    good luck!
    Hi Tom,

    I've been on several different cocktails over the past 8 years. Currently on Xeliri + Avastin. I'm doing OK on it for now but my oncologist and I do talk about future options -- which will probably be necessary at some point.

    I don't know much about mitoycin -- will definitely check it out

    I am 'enjoying' xeloda instead of 5FU, although it does affect my hands and feet. Not too bad though.

    Good luck to you! and thanks for sharing

  • kuastoi
    kuastoi Member Posts: 63
    Thanks for the inputs
    I have been to Dana Farber, when I was 1st diagnosed in 2009. At that time I was new to the first line treatments and they had little to offer beyond that point as all was going well. When I tried to get back down there, found it a little hard to get in as they were not communicating with me or my local Onc very well so we went to MGH. Will probably get back there too for a 3rd opinion.

    I have gone veggie - would like to go totally raw with the diet but too hard to plan esp. in Maine in the winter. I do use PSK, and am on cimetidine as well as aspirin, flax and kefir. Have fallen off the juicing for a while after my bowel perf this summer but just bought a 50 lb bag of juicing carrots and a bunch of greens - gotta get back on it.

    With regard to the shying away from Gemzar - it was related to their collective experience there - they feel it is a dead drug for CRC - but I know responses are individual. We'll see, they did seem open and helpful with planning/arranging options for clinical trials - only they share the multi-institutional trial slots with Farber and Beth Isreal in town as the phase I and II trials often have limited enrollments.

    Thanks again for the thoughts