Clinical Trials: Hi, I'm wondering how... - Advanced Prostate...

Advanced Prostate Cancer

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Clinical Trials

Blair77 profile image
13 Replies

Hi,

I'm wondering how many people are participating in clinical trials?

Thanks,

Blair

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Blair77
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13 Replies
AlanMeyer profile image
AlanMeyer

I was in a radiation clinical trial and a couple of subsidiary trials (tissue testing) at the U.S. National Cancer Institute. I thought it was very worth while. Benefits to me were:

- Access to excellent doctors.

- Comprehensive medical testing and scanning.

- Free treatment (not even a copay or a parking lot fee).

- Free followup for about six years.

- Extra followup (monthly PSA testing) when PSA bounced around.

- The treatment worked!

Some articles were published about the treatment. I hope they offered some benefit to cancer research.

Alan

Gecrellin profile image
Gecrellin

I participated in one briefly using sirolimus in conjunction with docetaxel and Carboplatin, but was pulled when the cancer spread to my liver. Right now I am on bipolar androgen therapy, but outside a trial even though the treatment is still experimental. Looking at others when this treatment stops working.

CBurnett profile image
CBurnett in reply toGecrellin

May I ask how you r getting BAT without being in a trial??

Gecrellin profile image
Gecrellin in reply toCBurnett

There is a trial going on at my clinic too, but I didn't qualify since I have had both Zytiga and Xtandi. It is simply off label for the testosterone.

jal1954 profile image
jal1954

I'm in a trial at MD Anderson for nanoparticles of Taxotere. Too early for any results.

TommyTV profile image
TommyTV

I'm on Stampede in the UK. On Aberaterone plus Zoladex plus Prednisone.

5.5 years so far. PSA at start 600+, Gleason 7. PSA currently 0.1.

Very happy!

bb66hotflash profile image
bb66hotflash

I have been in three drug trials. First one with Galeterone, was stopped after 31 days due to uticaria (rash from head to toe). 2nd one was on Enzatulimide for 31 months, until fatigue became debilitating. 3rd one was a Level 1 on AZ-8146, had to stop after liver enzymes (ALT and AST) rose rapidly. Did a retry on half dose and had same result. Overall a lot of good and some not so good.

bb66hotflash profile image
bb66hotflash in reply tobb66hotflash

Correction AZD8186

Pguenette profile image
Pguenette

I'm on one via Johns Hopkins Baltimore/DC. It's for double continuous ADT. I'm fortunate to be in the trial arm doing Eligard (3-month shot) with Abiterone (daily pill). Other arm substitutes something else for the Abiterone and having harsher side effects. I had Gleason 10, failed surgery and radiation. Thus far on this trial 27 months undetectable PSA.

Belinda4444 profile image
Belinda4444 in reply toPguenette

What is the name of this trial.

What doctor is leading this trial.

We are on a trial at Johns Hopkins now, Ken Pienta is our doctor.

Pguenette profile image
Pguenette in reply toBelinda4444

Trial through Johns Hopkins is national in scope and is led by Dr. Channing Paller.

My experience was one of ignorance. I was on one for non-met PCa. After about a year an F-18 pet showed I had mets in spine, hip and sacrum. The study 'docs' insisted I didn't have mets, after viewing the same images. I was stupified. I left the trial, and never heard another word from them. I have my contract that provided years of follow up care no matter how you left the study. I was, to say the least, disappointed.

Joe

ctarleton profile image
ctarleton

As my cancer was becoming castrate resistant after initial ADT, I was offered a clinical trial involving Yervoy (ipilimumab). After taking into consideration other health issues I was having at the time, plus some reports of earlier clinical trials adverse effects involving this agent, I decided to decline the offer for the short term.

Charles

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