Are there others with Gleason 9 prostate cancer?

Right here...

Yep. Gleason score 9. But so far it is still confined to prostate. Did Brachy radiation and external beam. Now on Eligard to keep testosterone down.

I'm at 9 (5+4). I was 60 when this was diagnosed a year and a half ago. PSA at diagnosis was 15. Mine had spread to my left seminal vesical and lymph node nearby and another lymph node at the bottom of the left kidney. So far, I've had 26 sessions of radiation, and I've been on Lupron for almost 18 months. The last PET scan showed about 50% reduction in tumor size and reduction of metabolic activity. My last 3 PSA tests were <.01, considered undetectable. Sex life went away about a month after the first Lupron shot. I'm scheduled to get one more 6 month shot in a month, then we will assess the situation. I'm blessed in that I don't have incontinence issues and rarely have trouble urinating for now. I'm researching other non-traditional treatments. Fenbendazole, for example.

I will add that weight gain is a side effect of Lupron. I've gained over 20 pounds since starting on it. So far, I lost 11 pounds with diet and exercise.

I’m at Gleason 9 (5+4) , PSA at diagnosis was 11, mine is spread to seminal vesical and lymph node near the prostate, i am on Erleada (4 pills daily) , i got the 1st. Lupron injection 2-1/2 months ago my next injection is in 3 weeks, My last PSA test 3 weeks ago was 1.6, I don’t have incontinence but i have to urinate frequently( every 2 hours avg.), i have no pain , neither burning but my sexual life is gone

First read all instructions to assure you are taking abbi precisely as prescribed. When I started on abiraterone at 4 pills daily (1000 mg total) my LIVER numbers on the blood test got bad too a year ago. Sometimes the Oncologist may pause taking abbi to let the liver reset. In my case we decreased the abbi temporarily from 4 to only 3 a day and then AFTER the liver improved, increased abbi back to 4 a day. It has worked great for me, keep the hope.

I’m a Gleason score of 9, stage 4 mat to lymph nodes. PSA at diagnosis was 147 and also spread tothe seminal vesicals and to lymph nodes near your kidneys. I also am taking Erleada (4 pills daily) and Lupron injections once every 3 months. PSA was down to .015 for 4 1/2 years, then it started to double at the beginning of this year, up to.97. My doctor started me on Pluvecto, targeted radiation therapy (IV’s). 2 shots in and PSA has started to come down. Almost constantly tired and want to nap a lot. Diagnosis was 5 - 10 yrs., yet I’ve decided to be a rule breaker and live another 20.

Yes, there are many others in this community who share your diagnosis and understand what you're going through. Connecting with fellow patients who have similar experiences can provide valuable support and insights as you navigate your journey. Feel free to share more about your situation or questions - this community is here to support each other through the challenges of prostate cancer treatment and recovery.

Yep gleason 9. In lymph nodes and pelvis/hip. Only having hormone injections, as chemo and radiotherapy ruled out due to other medical issues.