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Post by jeffn on Nov 11, 2009 8:02:32 GMT -5
With posts about different drug trials of late I got to thinking about trials and under what circumstances I might participate. So would you participate in a drug trial? Under what circumstances and what factors would you take into consideration before signing on?
My troll is not directed at only SD issues but drug trials for any condition as I know many here have other issues besides SD. What do you think?
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Post by jeffn on Nov 11, 2009 8:13:43 GMT -5
For me I think my answer would be a definite maybe. I think I would look at my condition at the time and have to weigh the risk and reward of the treatment. If the trial represented a kind of last chance for me I would be more likely to join. If the drug involved were an existing drug and it was being tried off label on what I was suffering from I might be more comfortable. In that case the drug is already out there and perhaps side effects etc. are known to some degree. Lots of variables with this I believe.
I don't think it would be an easy decision but am curious as to what people think.
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Post by grammie on Nov 11, 2009 19:52:44 GMT -5
I personally think it would depend on the quality of life I'd recieve and for how long. I realise they don't really know and that is why it is a trail but I'd like some idea of it. There is both good news in the trials as well as not so good news. It would depend on my health and as I said the quality of life I'd experience.
grammie
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Post by kathygirl on Nov 11, 2009 21:35:23 GMT -5
I would try a drug trial if nothing else was working and the disease was getting worse.
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Post by christel on Nov 13, 2009 20:36:03 GMT -5
My condition at the time would have to be brought into consideration, as well as what the effects on both sides of the coin would have on my family. I really think that what decision one makes is hard to predict until faced with that choice at the specific time and under the circumstances one is currently facing. So, I guess the bottom line would have to be, "we'll see" and cross that bridge if and when we come to it!
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Post by steve201 on Nov 14, 2009 0:49:47 GMT -5
I think I'd try just about anything to stay on this planet longer.....lets see...I took cytoxan instead of the other drug of choice..much harder on me.....I prayed to St. Joseph for my health....changed my diet...went to a shrink....did deep tissue massage...took drugs that were iffy if it did anything or not...and if they'da asked me stand on my head and sing the theme song to cat's every nite...I'da done that too!!(glad that wasn't on the list to try  ).... ;D so..yeah...whatever it took to get somewhat healthier.....never give up...never surrender to the disease..... Steve |
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Post by jeffn on Nov 14, 2009 8:31:23 GMT -5
The replies so far echo my feelings I think. Can't give up but not to be entered in to lightly. I think most of us are not in the market for a trial at this point in our SD history. There was a post here in the early days from a woman who had been in a trial and had very good result but now was in a situation that had not occurred to me before her post. That being the trial she was involved in was over and she did not have access to the medication anymore, backsliding some. That would be depressing for me but the trial may have slowed the SD down and perhaps the drug will become available soon. Besides any progress is good progres.
For me the trial issue would definitely be a "I will see when and if" thing. Hopefully my progress will continue and I won't ever have to cross that bridge.
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Post by kathsherman on Nov 14, 2009 10:57:00 GMT -5
For me, signing on to a drug trial would be situational. If I was getting worse and other treatments have failed, and my TRUSTED Dr.'s (I would get several opinions prior) recommended a trial treatment, I guess I might? Over the years, different trials have been offered, but I always went with what was already proven to work, in order to stabilize this disease. It would be noble to become part of a "trial study" for research purposes, but again, I am a "Mom" and felt that I could not risk taking a drug/placebo that was not proven. I know that even the approved drugs don't work with everyone....I haven't been willing to gamble. Again, I must say, I am lucky enough to have had wonderful insurance coverage. If a trial drug was offered and I was uninsured or simply couldn't afford expensive meds, would I take a trial drug to stay afloat? I would.... So....interesting question. So many circumstances to consider.....  kathleen  |
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lucci
New Member
Posts: 49
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Post by lucci on Nov 14, 2009 19:43:24 GMT -5
Kathleen,
PERFECTLY said !!!
Lucci
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Post by kathsherman on Nov 14, 2009 20:13:53 GMT -5
thnx lucci....my board buddy!
kathleen xo
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Post by Cubby on Nov 17, 2009 20:22:32 GMT -5
I would have tried anything! But, the doctor told me I was "too far gone" for any trials. that is how I ended up leaving him and going to a different place and doing the treatments I did.
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).... ;D
