Weighing the cancer risk reduction & quality-of-life cost of ADT?

I'm 74. Christmas Eve will be one year on Orgovyx (daily ADT tablet) and I had nine weeks of weekday radiation last spring. Gleason 7, N1M0 (prostate plus two adjacent lymph nodes). No surgery. My oncologists are very young and more focused on cure than quality of life. I have a follow-up with the medical oncologist in the coming week and a second opinion appointment with another medical oncologist in December. From what I have read, testosterone recovery for those of us in our 70s is a coin toss. I miss sex (painful reaction to Trimix injections) but am not ready to give up to accept a surgical implant, and the other side effects of hot flashes, fatigue, loss of body hair, and muscle loss are worth considering. I've been prescribed another year of Orgovyx but will pressing the doctors hard to shorten the time or "take a holiday" until PSA (undetectable since May) rises enough to warrant action. Orgovyx also throws off blood levels and I'm not interested in trading prostate cancer cure for diabetes or stroke. I'm just looking for < 10 years of reasonable quality of life without mortality from this disease.

@jime51
Having a painful result from Trimix is not uncommon. It is usually caused by one of the three drugs in the mix. Taking the other Two drugs can resolve the problem completely and still allow you to get an erection. Speak to your doctor about this.

You can Search the forum for trimix issues, somebody posted about the same issue a few months ago and found the drug that was causing them the pain and removed it.

I was on Lupron for six years and Orgovyx for one year When my oncologist and I figured I could stop taking ADT since my Testosterone was very unlikely to come back. I was 77 And took off from ADT for eight months. My testosterone rose every month, My oncologist told me I needed to go back on ADT. I’ve never really had any major problems with it. I don’t get fatigue. I exercise a lot. I do have to take bone strengtheners because I’m castrate resistant. My testosterone has been less than five for over 8 years Other than the eight months, I stopped ADT.

Orgovyx Has reduced my red blood cell counts and hemoglobin, but not low enough to Have anemia. I have plenty of energy. I run around the track twice a day, a full mile without stopping, It doesn’t tire me and I don’t get winded. I even do this after going to the gym.. I go to the gym three days a week and exercise with weights. I do take blood thinners because I have a history of Afib. Exercise with ADT gives you a lot more energy than if you don’t do it.

Yes, I have no body hair other than pubic hair and the hair on my head, No big deal.

Nobody, I know or meet would guess I have prostate cancer unless I tell them.

I found a lot of ways around hot flashes, Orgovyx Has helped a lot, Especially since I started taking Orgovyx in the evening rather than in the morning, when I take Prilosec.

@scottbeammeup
One thing that supposed to really help with the fatigue and the Depression is getting a lot of exercise. It seems contrary to logic, but I know a lot of people that have Given in to finally exercising a lot and it resolved their depression and fatigue. Exercise with weights is very important, It will keep your muscles in shape and also help with the osteoporosis. A year ago, I couldn’t get off the ground without pulling myself up on a bed or a chair or a fence. I went to the gym three times a week for an hour and within four months I was able to get up without any help.

This is talked about a lot in the ancan.org Weekly advanced prostate cancer online meetings. A lot of people have the exact problems you describe, and found that exercise made a major difference in mood and fatigue. You’re 62 or 63 you can easily do it.

Try to go to a park regularly and walk or run. If you have a problem, running because you get tired too quickly take electrolytes, They make a big difference and enable you to run longer distances. I started doing that about six months ago and my stamina increased incredibly so that I can run for a mile without stopping and I’m not fatigued or winded. At first I could only run part way, Had to walk a little then run a little, but with electrolytes I was immediately able to run a full mile without stopping. I’m 78 so I can’t run very fast but I can keep it up. Over a few months of doing it, I can now run the distance without the electrolytes.

My testosterone is less than five and I’ve been on ADT for almost eight years. I do take bone strengtheners because I’m castrate resistant. But no one would guess I have prostate cancer and have such low testosterone. I’m very active.

@jeffmarc I am sincerely grateful that you've had a good experience with Orgovyx. When I told my urologist that it was a good thing he didn't tell me about all the side effects, he said, "People have different results." The problematic chemical in Trimix is alprostadil (Prostaglandin). The issue is that it is the primary chemical causing blood flow for erections. People have lower reviews of results with Bimix. It's not the most important issue, though: if I were able to have erections, there's probably one day a month that I'd even care. ADT has lowered my libido and energy enough that physical intimacy isn't a reasonable expectation...The last time I attempted just foreplay as an expression of closeness, I had to apologize to my wife about halfway through that I was falling asleep. And that's despite my exercising 90 minutes each weekday. I feel better for a short time but I'm crashed by bedtime. I'm hoping to get more insight from the second medical oncologist for solutions to make life on ADT more livable. I'm extraordinarily stubborn, so I have no plans to give up treatment entirely, but I keep my expectations low.

@jeffmarc Thanks Jeff, I do and have been exercising at least six days a week since I was in my 20s. That was one of the hardest things to come to terms with--still working out like crazy but losing muscle anyway, and getting a small belly for the first time in my life that doesn't go away even if I fast. I know it's just vanity but still ...

My general exercise routine is weights and aerobics at the gym every other day, bike riding every other day for 15-25 miles (or swimming if the weather is bad), and yoga once a week.

In addition, I walk my dog every morning rain or shine for 60-90 minutes (a bit less in winter). This isn't much exercise (she's a hound so stops to sniff things every couple minutes) but does make me feel better mentally.

The other thing that's helped is staying as distracted as possible to keep bad thoughts at bay, and Wellbutrin has made a difference too.

I have an appointment with an endocrinologist to discuss bone health options but there's a six month wait (appointment is in late January 2026). TBH, though, I now view all doctors through a lens of suspicion and feel that they deliberately omit or downplay side effects of treatments. If I *do* agree to any type of bone drug it's going to have to be one that can be quickly stopped if side effects show up vs something like ADT that looks like it's going to be permanent.

@scottbeammeup
I took Fosamax pills once a week to keep my bones strong. They require you to take them first thing in the morning, Sitting up for 30 minutes. I never found out a problem to do that, I would just sit up straight in bed and read the news.

The other choices are Zometa and Xgeva. Xgeva Active ingredient is denosumab Which is used in different drugs in different strengths. Both of these injections can cause osteonecrosis. Zometa has a slightly smaller chance of causing it and getting it at all happens in a very small percentage of patients.

I do a lot of sit-ups at the gym to minimize the belly, They really strengthen the stomach muscles. I am thin, so it’s small already.

As I mentioned in another message, I Wake up about 6:30 AM and go to sleep about midnight. Sometimes I’ll feel tired in the afternoon and I’ll take a 25 minute nap, Setting my phone to wake me in 25 minutes. That resolves fatigue problems later at night.

@jeffmarc Can Fosamax be taken with food or beverages, i.e. my morning coffee with milk?

I too prefer longevity with minor side effects which do not diminish my quality of life. What I do not seek is longevity with debilitating side effects which prevent me from doing things that I enjoy like traveling and socializing with family and friends.