Question on 5 proton treatments with ADT

@grohman A.S. 13 years. Now 4+4 (1 lesion)
How are things since 2023 when you didn't do ADT?
I am leaning not to take either.
Thank you

I know the anxiousness you are experiencing, I went through it all last year. I am 75 and was diagnosed in May 2022 with a Gleason score of 4+4 in two biopsy cores and 3+4 in two others. My cancer was/is confined to the prostate and a biopsy was performed after a PSA of 7.7 led to an MRI finding of a PIRADS score of 4. My cancer was graded high risk and scans prior to treatment showed no metastasis.
I decided to go with Proton Beam therapy after reading about Photon and surgery. I did not want to experience the surgery recovery and my urologist concurred with my decision and said if cancer recurred he could do surgery after radiation if that is what I would want.

In June 2022 I was given a Eligard injection of 6 month duration. This was in conjunction with my urologist oncologist and MD Anderson radiology oncologist who both said 18 months of ADT along with the 39 Proton Beam treatments showed to be the best regimen to prevent recurrence. I was also given Casodex in the beginning because Eligard/Lupron have a slight lag time before effects are felt. After appropriate lab tests showed my PSA was less than 1 and my testosterone level was also depressed, I then began the daily Proton treatments on September 8, 2022 and the only side effects I experienced were the hot flashes from the Eligard.

On November 1, 2022 I had my last Proton Beam treatment and the entire time until today I have not experienced any side effects from those treatments. I saw my urologist for a follow up in December and was given my second 6 month Eligard injection. My PSA at that time was 0.02 and my only side effect from the ADT is the hot flashes. At times I don't feel like doing a lot of physical work outdoors, (I live on 8 acres and have a lot to do), I attribute that to the winter weather and just being just plain old age and lazy. I do though still enjoy getting on one of my motorcycles when the weather is nice and going for a ride! My urologist says don't worry about the cancer killing me...the motorcycle riding will take care of that for me. lol

In June I will see my urologist, radiation oncologist and receive my last Eligard injection and hopefully from that point on it will just be routine visits with my urologist to monitor my PSA and overall see how I am doing. My Eligard injection showed start to wear off after January of 2024 and it will be after that date I should see changes in my PSA that will be reflective of the Proton therapy because the suppression of PSA will be solely dependent upon those treatments and not the ADT therapy. The studies I have read claim the concomitant use of the ADT treatment with the type of radiation chosen is the best course of action to prevent recurrence.

Upon my biopsy in May 2022 my urologist sent my samples to a lab in California for a genome assessment. The result was my genome makeup showed that I am in the lower risk category for recurrence. Sometimes someone can be low risk based on the biopsy but the genome assessment will show they are in a higher risk and sometimes the treating oncologist may advise brachytherapy after the beam radiation therapy as an added insurance against recurrence to kill any still surviving cancer cells.

Regarding the ADT therapy, based on my experience I would not hesitate to go through with it again. Yes, the hot flashes are unpleasant but based on what studies have shown I believe it is worth the unpleasant effects to possibly assure that microscopic cancerous cells do not grow and add another attack upon the cancer with whatever mode of treatment you choose. It is expensive but in my case it was covered by my insurance and as it was given in the hospital infusion center it was picked up by my medicare (I think) or by my supplemental insurance.

Best of luck to you sir and don't hesitate to ask more questions and read all you can. There is a lot of good information on youtube from reputable sites to inform you. I will recommend one that has the full spectrum of information I found helpful. If you search on youtube for "Prostate Cancer Research Institute" you will find hours and hours of information that will help you in your journey. And with all that I will say again best of luck and don't forget prayer as well.

@northshorepaul

You are very lucky. I had horrible side effects from Lupron with 24 hour a day soaking sweats from head to toe, migraines, bone pain, joint pains, and hot flashes. The hot flashes were minor compared to the other side effects. It has taken 9 months for the side effects to taper off after just one 3-month Lupron shot. My PSA has been undetectable, but I do not credit the Lupron for the low numbers since all measurements were after stopping Lupron. Testosterone is just beginning to show some recovery, but I have no libido or erections for a year now. I have not talked to anyone who has had such severe side effects from Lupron.

Please check the JAMA Oncology report that just came out. Sets definitive duration lengths for ADT + EBRT. Last night was my first night without Orgovyx in 14 months. It’s probably the placebo effect, but I feel great now 🙂

@robertov, maybe not a placebo effect. AI says Orgovyx has a 25-hour half-life.

But after 14 months there's likely some build-up that needs to clear. So maybe a little placebo effect. 🙂

My experience:
After a year on Orgovyx, I started feeling better just days after stopping. Noticeably better after a week; with continuing daily improvement, I felt great after 2 weeks.

Testosterone after 2 months showed almost full recovery. A year's worth of subsequent testing showed consistent 90-95% testosterone recovery (~400).

For context, I was 72 years old at that time. Gleason 9, stage 2, confined to prostate, treated with HDR Brachytherapy + 5 sessions SBRT at UCLA.

Of course you may respond differently.

And in case you want some general info:
https://www.healthline.com/health/drugs/orgovyx-side-effects
Best wishes.