Deciding Participation Research?

jhope
jhope Member Posts: 58
edited March 2014 in Breast Cancer #1
Hello all. I am sitting here trying to think how to figure out if I should stay in a research study I'm in. I know it is a personal decision but unsure if I am making the right decision. My husband does not like it all (that I'm in study).

I'm taking clondronatye 800mg x2 or a Placebo. This drug is for bone strengenthing, so I AM NOT ALLOWED, to take any other calcium, etc supplements at all. This is very serious as it is a 3 year study, I started one year ago when I first found out I had cancer, two to go.

I am afraid if getting placebo what irreversable effects have happened in my body as I am in menapause now (I'm 39) because of chemo, and worries about bone metasitisis. Then again I know research is extremely important. What do you guys think? Thank you I need someone who understands the position I'm in.

Comments

  • SusanAnne
    SusanAnne Member Posts: 245
    #2
    Hi jhope. I'm in a trial as well. Who was it that suggested you join the trial? What were the results of your bone density test? How often/closely are you being followed/tested by the trial? Have you researched clondronatye and all it's effects? Is your condition improving or getting worse or is this for prevention? These are the kind of questions you should ask yourself and if you don't feel comfortable with the answers you come up with, then bow out of it. Yes, research is important, but if it's driving you crazy it's affecting your quality of life and it's not worth it. You should feel good about your decision, whichever way you go. Good luck making up your mind.
    Susan
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #3
    No, jhope, I don't work for a dietary supplemental company. I am driven by a force much greater than that, part of which includes my love for my children, and a dedication as a health care professional to offer patients the most effective, least toxic product available.
    In response to clodronate, I don't know how much you know about it; in a nutshell it is more effective than zometa or aredia, does not have as many adverse effects (side effects, etc.) and it has been in use as a preventative for bone metastasis in Canada for the past 20 years. My question is why don't we just use their clinical data to assess its efficacy?
    As for drug vs placebo that won't really matter as long as you get tumor markers done (CEA and CA 27.29) and bone scans yearly or sooner if indicated by bone pain.
    Reason why what you get doesn't matter is because we don't have a medication on the market that is used to prevent bone metastasis. Maybe you're one of the lucky ones and you are receiving what is not available to the rest of us.
    As a side note, I have been on herceptin and zometa for bone mets since 8/2001.
    The only reason for concern would be if you do have bone mets already, then you want to know what you are taking. Hope this helps.
    God bless.
    hummingbyrd

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