Proton Therapy + Orgovyx, long term side effects?, age 50 something

I was initially diagnosed at 56y/o with a localized 6(3+3), and was on active surveillance for 9 years, giving me time to evaluate all treatment options.

At 65y/o, with a localized 7(3+4), I chose proton radiation (28 fractions @ 2.5 grays/fraction). Prior to starting treatment, a second opinion upgraded the 7(3+4) to a 7(4+3); we simply added 6 months of Eligard.

The proton radiation treatments were uneventful. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. (That’s how benign this process can be.) I’m now 5+ years post-treatment.

Prior to starting ADT my medical oncologist recommended that I ramp-up my weightlifting regimen (or any load-bearing resistance-training program) to minimize the known side-effects of ADT. Already a gym rat, that was easy to do. As a result, I only experienced muscle atrophy, low libido, and mild warm flashes. But, I avoided the common ADT menopausal-like side-effects often mentioned: forgetfulness, confusion, memory loss, mood swings, emotions, fatigue, ED, insomnia, hot flashes, night sweats, and more…. (Though my wife did tell me that I started watching way too many Hallmark Channel shows!)

> curious as to why with just a 7(3+4), they’re recommending ADT (Orgovyx) for you? That’s uncommon for intermediate favorable disease. Have you had an ArteraAI prostate test? The results will tell you whether or not ADT will be beneficial.

> have you had any other biomarker (genomic) tests?

> with your 3+4, what % of that is “4”? That matters in the treatment decision.

> did your MRI or biopsy reports mention anything about cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? (If not, that’s good.)

> do you plan to use a rectal spacer?

The key point with any external radiation treatments is for them to not overshoot your prostate. If they can avoid overshoot, you’ll be in great shape during and afterwards. Despite proton’s Bragg-Peak characteristics as it relates to prostate cancer treatment, they still can’t lazily overshoot your prostate; you need to work with them on this important issue.

Diagnosed with de-novo oligometastatic (stage 4b) prostate cancer at age 56.

Treatment history:

- emergency debulking surgery to decompress my spine (2021)
- 20 gy post-op *photon* radiation to my spine (2021)
- ADT, Firmagon then Orgovyx (2021–present)
- Erleada (Apalutamide), 2021–present
- 60 gy *photon* radiation to my prostate (2022)

Current status (2026): deep, sustained remission — PSA undetectable (<0.01) since January 2022, all scans clear.

Side-effects (all mild):

- reduced sex drive
- loss of body hair (but not baldness, and I still shave)
- rounding of body shape
- mild gynocomastia
- more effort required to maintain weight
- mild radiation cystitis and proctitis
- fatigue (has lessened over time)
- hot flushes (have lessened over time)

Heart health, bone density, and muscle mass are good. I have lingering mobility issues because the spinal compression left me paraplegic in 2021, but over the next 2 years I was able to regain use of my legs and core muscles and rebuild muscle mass *despite* being on long-term ADT.

The trick is to keep moving and doing some kind of resistance exercise (light weights, exercise bands, or even just yard work or gardening) to tell your bones and muscles to keep building themselves up even though there's no testosterone signal.

@brianjarvis hey Thanks for your reply.

Artera said that ADT would be beneficial.

No other genomic testing.

My biopsy report said
- Prostatic adenocarcinoma, Grade group 2 (Gleason score 3+4 = 7)
- 11-20% of tumor is Gleason pattern 4
- Tumor involves 3 out of 6 cores, tumor length 7.5 mm, 7.5 mm, and 1.5 mm
- Perineural invasion is present

Yes if I get proton radiation treatment I plan on the rect spacer.

Thanks for mentioning about over shooting the prostate!

Had Orgovyx for 7 months. Slight bone & muscle loss. If I had not had a pre and post DeXA scan would not have noticed. Did resistance (muscle) and impact (bone) exercises to minimize loss as well as calcium supplements. Although I did not have hot flashes that is a reported side effect for 50%+ who use it. As brianjarvis mentioned not sure you need ADT unless your biopsy showed aggressive features such as cribriform, intraductal, 45% type 4 etc. The Artera AI test specifically states if adding ADT has a benefit based on your biopsy tissue. Also, anyone having Proton should get a rectal spacer since you do not want the Bragg peak hitting the rectum. The spacer allows more error before a negative effect.

A 3+4 does not necessarily need to have ADT (Orgovyx). It can’t hurt, but it’s not essential unless there is a high Percentage of four.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk fast on a track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that. With only 4 to 6 months, you may not need this, But you will get some of these issues.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. If this really bothers you come back and we can give you a lot of ideas on ways to get around it. You have to realize that being on ADT is not a 4 to 6 month Treatment and it’s over. It will take you Around three months to get back to normal for most people, if you are on Orgovyx, But it takes time to get the testosterone back And for some people it takes longer.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss. Just be careful about how much you eat and you probably can get back to normal in about nine months.

@jeffmarc This summary is very helpful, thanks very much.

Any fatigue noted with Orgovyx?

@johndattilo
As with all types of ADT, some people have fatigue others don’t.

Sorry you've found this group due to diagnosis, but grateful you're here because this group is AMAZING and there is a wealth of phenomenal information. I, too, am new to this dialogue. I had 6 weeks EBRT and have been on ADT + Abiraterone for 10 months (node positive and Gleason scores of 9 throughout the prostate). To give you insight on Orgovyx, I was switched last month from Eligard shots to Orgovyx (+ continued Abiraterone). Although my current side effects may just be a result of having been on Elidgard and Abiraterone nearly a year, I noticed a profound change in circumstances on Orgovyx for the past month.

Since Orgovyx, my Mental Health has deteriorated significantly. I have had profound depression, distinctly more severe than while on Eligard shots. Moreover, since Orgovyx I have had some very concerning cardiac issues (again, unclear if it's just an accumulation of ADT over the past 10 months but the events were none like I experienced on Abiraterone + Eligard). Apparently Orgovyx is safer on the heart. Given the above, my treatment has stopped for a month to address my cardiology issues (boy do I feel good).

I wish you all the best in your journey. This is a savage disease because it's treatable for many, yet the treatment has profound side effects. There's so much hope that you'll readily survive, yet the side effects may cause a total change in who you perceive yourself to be and you'll need to radically change your mindset about what's important in your life. I wish you much love and kindness in your PC journey.

Unfortunately there is no way to know how will one react to ADT before one trys it. Side effects vary so broadly that it is fascinating, to say the least.

My husband is on Orgovyx and Nubeqa and has no side effects except somewhat lower libido, which is expected and very often the case. He is 70 and still works full time, exercises every day and has very healthy diet. He also is taking supplements and having protein shakes. I think that all of those factor help him tolerate ADT remarkably well *knock the wood. His mood is also unchanged. He did not gain any weight and all of his blood lab results are perfect. 🧿

Wishing you super successful RT and complete eradication of PC 🍀