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 Should We Discuss Clinical Trials With Our Doctors? 
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Joined: Fri Jul 16, 2010 2:56 am
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Post Should We Discuss Clinical Trials With Our Doctors?
Overwhelming Majority of Americans Say Discussions about Clinical Trials Should be Part of Standard of Care

New National Public Opinion Survey Reveals Shifts in Public Awareness of Clinical Trials

Arlington, Va. – July 25, 2017 – An overwhelming majority of Americans (86%) agree that health care professionals should discuss clinical trials with patients diagnosed with a disease as part of their standard of care, according to a new national public opinion survey commissioned by Research!America. (PDF of survey info http://www.researchamerica.org/sites/de ... seDeck.pdf ) And three-quarters of respondents (75%) agree that taking part in clinical trials is as valuable to our health care system as giving blood. But Americans are split on whether it’s important for everyone to take part in a clinical trial if they are asked – 44% agree while 45% disagree and 12% are not sure. A higher percentage (74%) said they would participate if they are asked by someone they trust.

What say you?

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Wed Jul 26, 2017 11:47 am
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Joined: Thu Nov 05, 2015 5:48 pm
Posts: 435
Post Re: Should We Discuss Clinical Trials With Our Doctors?
100% agree doctors should make patients aware of any trials or studies specific to their condition - whats the downside?


Fri Jul 28, 2017 3:45 pm
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Joined: Fri Oct 27, 2017 5:41 pm
Posts: 13
Post Re: Should We Discuss Clinical Trials With Our Doctors?
My next appointment is 11/7. He’s getting an earful from me. I’m tired of hearing that there’s little to nothing to be done. Within reason, I’ll try anything to rid myself of this malady. I’ve already contacted a friend who can get me an appointment with a top urologist in NYC. It’s over 200 miles away but at this point, I’m ready to go if need be. Hope everyone gets the relief they’re seeking.


Mon Oct 30, 2017 5:52 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 626
Post Re: Should We Discuss Clinical Trials With Our Doctors?
I tend to agree with the docs that there's little or nothing that can be done. If I count the things I've gone though:

1. ABXs - so many, don't make me list them all out...and the life threatening side effects I' gone through. No cure.
2. Nerve pain medication - lyrica, gabapentin...and again, all the side effects with no improvement
3. Physical therapy - I've had more fingers up my a&& than ten men in a hundred lifetimes should have to endure. No cure.
4. Steroid AAI - been there, done that...eliminate most symptoms but not a feasible longer-term solution
5. NSAIDs, been on prescriptions, effective cure but side effects rule out continuous use. I've had four (4!) rubberband ligations...more anal probing.
6. Muscle relaxers...reduction in symptoms yes, but as ever side effects rule out continual usage.
7. Nerve blocks - ganglion impar and pudendal. Ganglion helps somewhat but was only temporary. And pudendal had me pissing my pants the whole way home from the doctor on the metro...no cure.

About the only thing I haven't tried is prostate removal, and obviously that's a last resort since I'm only 37yo and would prefer to be able to have sex and not pee my pants for the indefinite future. So what's left? I'm as frustrated as anybody, but it's not like my doctors haven't tried. Doctor Pontari basically said there's not much we can do and you just have to wait. That's been the best course of action, and over the years it's slowly reduced in severity. Imagine that, the body's immune system slowly solving the problem.

Yeah it's not what most of us want to hear but time has proven to be the only cure in my case.


Sun Apr 22, 2018 5:54 pm
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Joined: Fri Jul 06, 2018 3:23 am
Posts: 5
Post Re: Should We Discuss Clinical Trials With Our Doctors?
Patient must be completely aware about the trial.


Fri Jul 06, 2018 8:25 am
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