Thursday, May 31, 2012
Mets Days 49 - Dendreon trial?
Today Jennifer, Chelsea and I made the 400 mile round trip drive to and from Virginia Beach to check out that sponsoring location of the Dendreon trial. It's a long drive, and according to the trial manager, everything must be done in the area: scans, blood draws, infusions, etc. It doesn't make sense to me. Since it's a double blind trial, I'd have only a 50/50 chance of getting the experimental treatment, which has never been used for urothelial cancer. It has been FDA approved for prostate cancer. We signed the forms, but I'm still trying to decide if it's worth all of the effort for a seemingly remote benefit. I'd ned to start this trial before July 25, so I have some time to decide, although the lead time is about 20-30 days from signing up to the first treatment (or placebo). As I told Jennifer on the way back, I feel like a guinea pig. I don't like that feeling.
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Hi Ken so far I've been a silent follower and late in the game on following your actual blog, although I've been thinking of you and Jennifer and your family and praying for you. I was part of a double blind trial when I was pregnant and discovered my pregnancy was actually a blighted ovum, when I was headimg into my 2nd trimester) basically I had been pregnant but the embryo had died but my body hadn't gotten the message and miscarried on its own and my hormones were doubling daily and I was really sick etc just like It was a viable pregnancy. So instead of a D&C a classmate of Steve's was part of the team doing a double blind study and offered for me to be in the study. It was emotionally really hard not knowing what group I was in in the end I had been getting a placebo and 4 weeks later because of the emotional strain opted out and got a D&C. Know I'm getting to my point:) the doctor I went to for the D&C gave me the actual exact drug the double blind study was researching although like you mentioned that drug hadn't been approved yet specifically for starting a medicallly necessary miscarriage, he knew about it and was comfortable administering it for that purpose, so my thought is if it's FDA approved and you could find a Dr. In the DC area rather than driving to VA that would be great, if it's FDA approved even for something different is it accessible on the market for some Doctor locally who's willing to try it? I would feel like you if I'm going through all of it I want to actually get the drug not some sugar pill. Anyway I'm sure you thought of this already but just wanted to share my experience incase it helps. The emotional toll of the 4 weeks waiting and not knowing was really hard, and I wouldn't do that again however I had other options and if this were my only one and might save my life I'd weigh it seriously.
ReplyDeleteNaomie DeMartini
After reading more about Dendreon I was obviously incredibly ignorant and naive to think those types of drugs/treatments would be readily available. Sorry for my ignorance and I never would compare what I experience to what you're facing what I should've said was I hated feeling like a guinea pig for 4 weeks in a non life threatening situation so I can't imagine what you feel like. Prayers love and hope to you and your family
ReplyDeleteNaomie