looking for encouragement

[JolleySprings]

Has anyone ever had success with Clinical Trials?

Just curious!

Thanks!

[Ramp7]

I did LUPSMA177 in a trial, 6 infusions. PSA dropped from 7 to 0.3 but it was not durable. Well tolerated. So for about a year it brought my PSA down.

[RyderLake2]

Hello,

I completed a clinical trial with Lutetium-177 looking at radiopharmaceuticals pre chemotherapy. It brought my PSA down significantly.

[God_Loves_Me]

I happy with ARX517

[NDJIM in reply to God_Loves_Me]

Can you provide a bit more information why you are happy with it and perhaps where the trial stands? Thanks so much.

[God_Loves_Me in reply to NDJIM]

It’s phase 1 or phase 2 it’s ADC and it is combination of chemo and immunotherapy. Min side effects. Search ARX517 and you will good presentation as well

[GoBucks]

I am very thankful for clinical trials. Stampede trial results were released right after I was diagnosed metastatic. I was a super responder to doublet therapy. Forever grateful for all who participate in clinical trials.

[London441]

I entered a clinical trial in 2019. Undetectable PSA post RP in June of ‘19 but due to adverse pathology I was advised to do the trial-abiraterone for 3 months, IMRT, 4 cycles taxotere chemo and Lupron for 2 years. My entire path would be different if I were diagnosed today, that is for sure.

Stopped the Lupron at 1 year on the encouragement of both my RO and the MO of the trial. I am now just past 3 1/2 years since full return of testosterone and PSA has been undetectable throughout.

I read your bio and see you have made many maneuvers to deal with the disease. I made very few but they were very aggressive considering my situation at the time. I have no regrets and am grateful beyond words to be disease free, but the consequences of treatment have been admittedly onerous.

Stay as diligent as you have been, it’s admirable. Great luck to you!

[KAKlott01]

I feel that I have had success in extending my life by years as a result of participation in clinical trials. I've been through 8 trials since October 2019, all leveraging MD Andersons medical Oncology department. Unfortunately, the situation has recently changed and I've been reclassified into Hospice due to bone metastases in my frontal skull and brain along with significant tumor growth.

I would strongly encourage participating in clinics trials where you meet defined match requirements. They work!!

[jtspitfire in reply to KAKlott01]

Please take care.

[j-o-h-n in reply to KAKlott01]

Greetings KAKlott01,

Don't despair, God is on your side.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Max24]

Lupron for 3 years and then relapse...new Astra Zeneca sponsored clinical trial for the last 6 months: abiraterone+ PARP inhibitor AZ5305 seems to be working at stabilizing PSA numbers in the low 2.0s...very little side effects. Also gives me VIP treatment due to the bi-weekly in-clinic blood monitoring....go for it!

[SteveTheJ]

Yes of course. Be more specific.

4 years ago I enrolled in one at MD Anderson that seeks to find out whether or not radiation or prostate removal is effective if you're already stage 4. I was in the group that got to choose and I chose prostate removal. I'll probably never know the result of the trial but I want to help science and future patients make informed decisions.

[j-o-h-n in reply to SteveTheJ]

Ήρωας.

Good Luck, Good Health and Good Humor.

j-o-h-n

[catsup]

I am in Canada and started on a trial Oct 28 /24. Merck drugMK-5684-003. Phase 3 trial. I am stage 4 PC most treatments exhausted. Almost thru my 1st stage. 4weeks. All tests so far have been positive . No side effects although list is 2 pages long.Will be going in to check again Nov28th. Pretty rigourous testing and oversight.. Not to many choices left so I stay positive and hopeful. Will keep you updated

🤞

[MooseJawg]

Check out [e-mail] Prostate Care Newsletter which often has trial info

[Moco1]

ABSOLUTELY and a year later it was approved,

It did work.

[Islandboy2021]

I have been trying to get into a trial for over a year. I have just run out of SOC options. I have finally got into a trial that starts next week. When you are late stage with this disease sometimes trials are all you have for continuing treatments. Depending where you live and if you can pay for the treatments yourself.

[Tall_Allen]

I was treated and cured on a clinical trial.

[JolleySprings in reply to Tall_Allen]

Did you exhaust all other SOC options prior to clinical trial?

[Tall_Allen in reply to JolleySprings]

No - it was the first thing I did.

[erhed in reply to Tall_Allen]

Cured is a strong word. Could you share with us the trial name?

[Tall_Allen in reply to erhed]

It was for SBRT -- now a SOC

[gjk59]

Similar to Tall Allen, but my second treatment, after brachytherapy (2012), was a clinical trial (Arches, 2014) for stage 4 at that time (mets to sacrum). Still kicking, but with usual SE's. Not sure that I would be here with SOC in Canada at that time. Do your own reseach, but I would highly recommend looking into clinical trials. Good luck!

[Tony666]

I was Gleason 9 but only a small amount. So what to do? Just doing RP felt like it was not enough but I didn’t like the idea of radiation. So 5 years ago signed up for an NIH trial of 6 months intense ADT (ADT + abi + Enza) followed by RP. Biopsy of removed prostate showed the intensive ADT did its magic and there was no evidence of disease (doctors called it “a complete response”). Now, 4.5 years post surgery psa still undetectable.

Things to consider when thinking about a trial:

1. Is there any track record? I didn’t want to be the first to try something. In my case, this procedure had already been trialed for a few years with promising results.

2. Do you fit the profile of someone who is likely to be successful? In my case, the track record showed better success with my profile (high risk but low volume).

3. Are the people doing the trial highly professional and trustworthy? In my case, I was doing it on the NIH campus in DC (a hidden gem that many don’t know about) by top doctors in their field (both oncho and surgery). Also, how attentive are they? At NIH I could talk regularly with the doctors and nurses.

4. What phase is the trial? I didn’t want to be in a phase 3 trial where there is 50% chance of getting a placebo rather than the actual medicine. If I am going to risk/try something, I want to know what I am getting.

[Johnstonearch]

I had my first trial 24 years ago and it saved my life! I have had 2 more in this Century and they have all pointed the way to a continuation of my life.