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Ever come close or do a clinical trial?

17 years ago

I was looking up a condition that I have and know of no medicines that really help. So when I clicked a trial questionnaire came up and I am thinking of reading furthur.

Any comments or warnings.

Carla

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Comments (7)

carla17
Original Author
17 years ago
I think I will forget it since I am not driving anywhere to try an "investigational" drug treatment.

Carla
mjsee
17 years ago
Well, both my boys were part of the clinical trial for Strattera...it was a GREAT thing for our family. Seven years of free psych and meds...

We were part of the final stage trial. Don't know that I'd be interested in doing a phase I trial.

melanie
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sammy zone 7 Tulsa
17 years ago
I might be interested in it, but depending on those in control, I would not click on an offer, but go to the real site. When a woman asked my opinion about something once, I did not respond to her, but went to Newsweek Magazine, and saw that she was a writer. That way I felt secure that the offer was legitimate, and that I wasn't being taken advantage of.

You don't want to waste a lot of time, then find out the conditions for the trial are unacceptable.

Good Luck.
Sammy
User
17 years ago
Edds been up for a stem cell trial for several years now using stem cells from his own thigh muscles for his heart failure. He is currently also used as a model for a plastic surgeon using a new filler for people with facial wasting. Primarily used for AIDS patients with wasting people with Cancer of other dibilitating conditions that cause facial wasting would also benefit from this non collagen very very expensive treatment. Edd's face went through a lot of changes after his last 2 heart attacks and this was going to be totally out of reach. It's available through several programs for AIDS patients by the company that invented it and EDD approached one plastic surgeon part gumption part outrage "hey what about the rest of us folk with other diseases that cause facial wasting. "Voila" just call him lumpy or pin head cusion cause he's had his face injected over an over and over again and is often black and blue but he thinks it'sworth it. He sits they inject other doctors prod and gauk///he's not Matt Damon but he looks a lot better.
janet_la
17 years ago
DH is taking part in a clinical trial right now. Generally speaking, I'm not crazy about Phase 1 or Phase 3 trials (he is in a Phase 2 which we are more comfortable with). Phase 1 trials are experimenting with safe dosages, and Phase 3(at least for the one DH is in) is a double blind study where you don't know if you are even getting the study drug. The Phase 2 he is in is experimenting with the best mechanism for dosing - how much at one time, how often, etc.

My personal opinion is that the decision to take part in a clinical trial would depend on what the condition is and how bad things would be without trying something experimental. For us, given that DH has a terminal cancer with no FDA approved options left to try (other than chemo with a 6-12% response rate), we felt like we had nothing to lose.

For those who may remember me and be interested (I haven't posted in AGES), DH has been in this trial since March of this year, and up to the last scan (done in mid Oct.), the cancer has been responding very well (significant shrinkage of all tumors, and some have disappeared)., Also, this drug, at least for him, has caused almost no side effects. However, his latest scan showed a reversal with growth occurring again. So far, it's not enough to bump him from the clinical trial, but it's not a good sign. Bottom line, though - he has had a really good year, and even though the cancer has started to grow again, it is smaller than it was last year at this time. All in all, for us, I'd have to say that taking part in the trial has been a good thing!

Just my 2 cents :)

Janet
kathwhit
17 years ago
Janet, of course I remember you. I am glad the trial has been a positive thing for your DH. I have been wondering how it was going. Thanks for the update. Hugs to you!
Kathy
carla17
Original Author
17 years ago
Janet, I'm glad Mike has had these trials and medicines to help him and I hope he continues to improve. I know this has been difficult with the traveling and the worry.

Carla

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