hopefulone Member Posts: 1,043
edited March 2014 in Colorectal Cancer #1
Is anyone on this regimen who isn't on a clinical trial??. My husband is on a trial involving xeloda/avastin and oxalplatinum. He is doing very well but there may be a possibility of surgery or rfa in the near future, and the ONC is very reluctant and hesitant since he is doing so well and since he would have to stop the avastin for any surgery and he would be off the trial and apparantly not be able to go back on.She doesnt' want him off and really isn't encouraging any other options. I believe all of the above are FDA approved and can be given w/o being on this trial and that we aren't getting "straight" answers. She has spoke to the surgeon and relayed that she is opposed to going off the avastin for six weeks until he is positive surgery will be done. I understand that , but we also get the distinct feeling, that she is focused on chemo only and trying to discourage us from anything else. Is anyone here on this regimen now or previously w/o being on a "clinical trial". ?


  • crazylady
    crazylady Member Posts: 543
    I just started this regimen yesterday and am not on a clinical trial. I believe that others who post are also on this chemo without being on a clinical trial. Hopefully they will post later.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Hi -

    Many people on this site - me included - have had Xeloda/oxaliplatin/Avastin without being part of a trial. I (Stage IV, liver mets) had 6 cycles in 2005 - not even part of a trial then - just routine, approved therapy. I have been NED since a couple of weeks following my second cycle.

    Realize that there are many different types of trials. Some are really testing new drugs or new combinations of drugs and procedures. Others are doing comparative studies between different protocols. There can be very subtle distinctions between taking these drugs as part of a trial and taking them on a normal prescribed basis. Given that Xeloda/oxaliplatin/Avastin are all FDA approved, your oncologist can actually use them in any way she wishes. Thus, not being able to go back on the trial does not seem to be a huge disadvantage - UNLESS the trial is paying for drugs and you don't have insurance that would otherwise pay. ou should understand this trial - hopefully you have been provided literature and it has been explained in what way this differs from standard treatment with Xeloda/oxaliplatin/Avastin. If your onc has not given you all this info, ask for it.

    I don't know what you should do. I can only suggest that your oncologist may be giving you good information, but you need to ask lots of specific questions so that you can understand what the issues really are.

    I am unusual, but I have been 24 months NED (and 21 months off chemo) with no recurrence of liver mets and no liver surgery. So, it is possible. I mostly try not to think about it, but I struggle with what to do IF I have a recurrence. Do we go with chemo pplus Avastin which worked so well before. Or, do we go straight for liver surgery / RFA? I don't know the answer, but I do know that it is a good thing your husband is responding so well.

    For what it is worth, my oncologist thinks the oxaliplatin is the key drug in my good results. My GI doc, on the other hand, says it is surely the Avastin. Who knows, but I at least think you should know that these three drugs in combination are FDA approved and it doesn't require participation in a trial to take them. (You do need to be off Avastin for 6 weeks prior to surgery and it sounds like that is what your onc is really worried about.)

    Good luck with the decisions,
  • hopefulone
    hopefulone Member Posts: 1,043
    Thank you all for the info. It's been very helpful. God Bless

  • claud1951
    claud1951 Member Posts: 424
    I was on xeloda and oxalplatinum but not avastin and I was not on a clinical trial.

    Hoping the best for your husband
  • apache4
    apache4 Member Posts: 272
    I was on a similar regimen but I had 5-fu which is the same as xeloda after it breaks down in the body. I had to go off the avastin to have a molar removed and althugh my onc was not thrilled the alternative of having infection was a worse prospect. Everything was fine and I am stable after 16 treatments. I agree with everyone else that you don't need to be on a trial to have this therapy...it is standard. Hope this helps.