In discussion with my medical oncologist today, he mentioned that I might be eligible to participate in a clinical trial for Inflammatory Breast Cancer treatment research. We discussed it for a few minutes but I'm not sure I want anything beyond standard protocol treatment, so this afternoon I will be doing some "homework" about the process. MD Anderson is a teaching/research hospital, so there are many clinical trials going on. Each patient is considered for participation based on their individual diagnosis, and since IBC is a rare type I suppose that's how I won the "privilege" of consideration. I will need to make a decision ASAP, since clinical trial participation would mean that my chemotherapy will start with a different "cocktail" of medicine and I will need additional biopsies. My chemo starts a week from today. One part of me would like to participate so that maybe something they learn from me might save another woman's life someday. Another part of me is already whining about having to have additional procedures and the possibilities of side-effects from the drugs. Has anyone here participated in a clinical trial? If so, how did it go, and do you have any regrets?
I participated in the clinical trial for Apixaban (Eliquis) before it was released, and I am very thankful that I did. At that time, I was not yet 65; so I didn’t have Medicare/medicaid and I was just going to the Huntsville Free Clinic, which was for low-income people with no health insurance. They gave me Coumadin as a blood thinner for my a-fib and heart failure, and I had to go to the Coumadin clinic for blood tests every couple of weeks, to see if they needed to adjust my dosage. When I was there, I noticed a sign for a clinical trial for blood thinners, which included exams, blood tests, and even a gas allowance to get to the Heart Center for the tests. It sounded good to me; so I signed up. This was a double blind kind of test, so no one knew which medication anyone was taking, and we all went in for the same blood tests as if we were taking Coumadin. The test lasted 3-4 years, and at the end of it, it turned out that I had been taking the Apixaban; so my doctor put me on that instead of the Coumadin. I liked it much better, and didn’t have to have blood tests like I did for the Coumadin, and it has worked out well for me. The Eliquis works by making the blood slippery so it doesn’t clot, instead of thinning it like the Coumadin did, so it is just a simple pill to take and no testing .
That's really interesting, Yvonne. I'm kind of surprised that the study lasted that long. I'm glad it worked out to your advantage, too. I've been doing a lot of reading and I believe I'm going to pass on this trial for the cancer drug. Just the list of potential side effects had me shivering. Of course they have no idea if anyone will actually experience those, but yikes. I suppose in my current state of mind, I just have too much already being thrown at me to add stuff to the mix. I don't want to have to have more biopsies or additional trips to the medical center, and apparently all the study group pays for is the drug itself. All other associated costs would be paid (with pre-approval) by my insurance and Medicare. Somehow that rubs me the wrong way.
https://www.aarp.org/health/drugs-supplements/info-2020/participating-in-clinical-trials.html Beth, Here is what I found online. I guess u may have looked into online references yourself. The pros and cons of clinical trials.
Thanks, Susan. I did find several articles about the pros/cons. After considering that I would have additional biopsies, blood work, etc. besides having the drug administered, I decided that I really don't want to participate. Standard chemotherapy treatment will be scary enough, and I would hate having to go extra times to the medical center. When I called the researcher to tell her I wasn't going to participate, she said she had just heard that my insurance company had declined the application because they don't pay for "experimental" treatment. So that settled that.
I was in one, but it was for a procedure to replace ruptured cervical vertebrae, not for drugs & meds. The only extra effort on my part was more frequent post-surgical visits to the orthopedist for them to do x-rays of the progress. As an aside, it worked out well for me.