How do you make a decision about a clinical trial?

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New Member

Date Joined Sep 2009
Total Posts : 4
   Posted 9/5/2009 4:14 PM (GMT -6)   
Hi everyone,

I represent a group of multi-school student researchers attempting to learn how patients make decisions about joining clinical trials. Our goal is to find and propose new ways to help future patients make better decisions about joining clinical trials.

If you or anyone you know has had to make choices about a prostate cancer study, please take a minute to participate in this short anonymous survey, or pass the link along. Your participation will greatly help our research. Please accept our deepest thanks. We're happy to share the results once completed.

Survey Link (click OR copy and paste line below into your browser):

-Steven H. Roffwang
Modified by Moderator, enables link ~ TC-LasVegas

Post Edited By Moderator (TC-LasVegas) : 9/5/2009 5:44:52 PM (GMT-6)

Tony Crispino
Veteran Member

Date Joined Dec 2006
Total Posts : 8128
   Posted 9/5/2009 5:44 PM (GMT -6)   
I have listed this thread as pending approval from our Administrator. I will not delete this unless he says to do so. To keep it live you need to write him by clicking the yellow tab on the top right of my post here.

Thank you for your work on such a study. Please understand our forum rules. This is a great survey pool, but it has to be done the right way.

Moderators, do not delete this tab unless as subscribed by the Admin.

 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
My Journal is at Tony's Blog  

Veteran Member

Date Joined Apr 2008
Total Posts : 1382
   Posted 9/5/2009 6:58 PM (GMT -6)   
I had my doubts about this survey so I decided to check it out. It looks ok to me. If it stays on HW I would hope we get to see the results.
My PSA at diagnosis was 16.3
age 47 (current)

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores

Veteran Member

Date Joined Apr 2009
Total Posts : 990
   Posted 9/5/2009 8:27 PM (GMT -6)   
Most legitimate surveys of this type name the sponsoring institutions, the principal investigator or sponsoring faculty member and offer to share the results.
Lacking any of this, I would wait for additional information. At a legitimate school a survey such as this will have been approved by an Institutional Review Board. The lack of such approval suggests that this is either from a school with no research funding or an end run around school rules.

Stay away until we hear more!
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads

Forum Administrator

Date Joined Jan 2003
Total Posts : 9747
   Posted 9/7/2009 8:21 PM (GMT -6)   
Peter Waite, Founder/Editor - Community, Information, Resources

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