new to site/clinical trial decision

snowmom60
snowmom60 Member Posts: 1
edited March 2014 in Colorectal Cancer #1
Hi, I was referred to this site by a member on ostomyland. I was diagnosed with stage II rectal cancer on 7/3/07 and will be starting chemo and radiation next Tuesday. They called me today to see if I wanted to join a clinical trial which would add drugs in week and four to the 5FU that they were already going to use. Week three will add oxiplatin and week four will add Xeloda, I don't think I'm spelling that right. I do want to help with cancer research but I am only 47 and don't want to do anything to risk my health either. Anyone have any advice pro or con? I would greatly appreicate any input.
Terry

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    I am 4 years out from my rectal cancer diagnosis, I was 46. I would ask alot of questions, but I would probably be in a trial. You will probably get the nrewest meds.

    Welcome to our site.

    Maureen
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Welcome Terry (but sorry too hear about your diagnosis) -

    You should make sure you ask lots of questions and understand the trial. However, please be aware that these drugs are in routine approved use for Stage 3 & 4 patients, so this trial (whatever the details) is not completely experimental.

    Oxaliplatin is routinely used for Stage 3 & 4 folks. It isn't a fun drug, but it is very effective for many people (including me). Xeloda is a oral drug which is metabolized into 5FU - so essentially it is 5FU in a form that it is easier take with some of the same side effects and some that are different from 5FU. I don't know anything about your proposed trial, but if they are ADDING Xeloda to your 5FU protocol as opposed to switching the 5FU to Xeloda, I would ask about multiplication of side effects - e.g. increased diarrhea, fatigue for example. Perhaps the Xeloda is a substitute for the 5FU pump???? If so, then it is much easier to take - if not, then you still have to do the pump thing plus take the pills and lose some of the convenience advantage. I'd ask about the details of all of this if I were you.

    I am guessing that this trial is about moving these standard drugs "down" to a cancer population with a stage lower than 3 or 4. Since you are obviously willing to go thru chemo for your Stage II disease, I think you might want to consider the trial, knowing that these are not purely experimental drugs with no track record. However, once again - ask every question you can think of and make sure you understand the answers.

    Take care and keep up posted,
    Betsy
  • nudgie
    nudgie Member Posts: 1,478 Member
    #4
    Dx with Stage II colon cancer in July 06. Chemo regime was FLOXFOX which included Oxaliplatin, Lecovorin an 5FU pump. Regime was for every other week for 6 months for a total of 12 treatments. Surgery was first to remove tumor (emergency surgery) and then port installed and then chemo. After chemo had colon reconnection surgery.

    My Onc, Surgeon and Primary Care Doc all agreed that my Chemo was for insurance and precautionary measures to make sure there were NO micro cancer cells floating anywhere in my body, but it was my decision to make.

    It's like the OLD saying, damn'd if you do and damn'd if you don't.

    I spoke with family and friends, which did help.
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #5
    Hi . Is the Xeloda in place of the F5U ? My husband takes it 14 days in place of the pump and so far has tolerated it well. He also has the oxal, as a lot of Stage IV do. The oxal produces a tingling in the hands and feet if he touches anything cold for a few days after treatment, but for him it is tolerable. You may want to go to the Xeloda website and check on effects etc and also do a websearch on the oxal. Good luck and God Bless. ( Ask your onc plenty of questions and do only that with which you are comfortable) Diane

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