ADT, maybe not?

4 weeks out from 5 treatment courses SBRT for Gleason 4+5 localized disease (one equivocal external iliac lymph node on PSMA). I received first dose 3 mos depo-Lupron 6 weeks ago (recommended 12-18 mos per RO) with plans to transition to Orgovyx at the end of the first 3 month cycle. Most RT side effects have subsided (still some frequency of bowel movements but manageable [received SpaceOar rectal spacer prior to SBRT]). As far as ADT is concerned I have occasionally afternoon fatigue (much better than experienced immediately post RT) and tolerable hot flashes. Sexual side effects, as expected, are part of the package. But the trade off if the treatment is effective is acceptable, though frustrating. I am letting the science and direction of my providers guide therapeutic decision making. At 73 (soon to be 74) my aim is for longevity first and foremost. I exercise (cardio or cycling) nearly daily and am looking to add some resistance training soon.

@budmartin Thanks for sharing, Bud!

I had similar numbers: 65y, 4+3, PSA 7.976, localized.

I had 28 sessions of proton radiation (2.5 Grays/fraction), SpaceOAR Vue, & 6 months (two 3-month injections) of Eligard.

My medical oncologist discussed with me the likely and possible side effects of hormone therapy and advised me to ramp-up my resistance-training exercises well before the 1st injection. (Otherwise, I’d experience all the ADT side-effects that most mention.) By engaging in a rigorous weightlifting program, my side-effects were limited to minor warm flashes, muscle atrophy, and low libido.

Six months after the 2nd (& final) injection, testosterone levels started back to normal and this few side-effects subsided.

The side-effects were a minor annoyance.

If your oncologist prescribes oral ADT like Orgovyx, you can try it and drop it if the symptoms are terrible. I have lots of side effects and am in my 11th month of Orgovyx. PSA has been undetectable since May...radiation, no surgery. I was diagnosed Gleason 7, 3+4 and 4+3, N1M0 with lesions in prostate and adjacent lymph nodes. I'm 74 and hope to shorten ADT to 12 or 18 months instead of the initially recommended 24. The men in my family typically don't survive past 80 due to cardiovascular issues, so I'm basically looking for another 5+ years and trying to beat that by taking better care of myself through nutrition and exercise.

@jeffmarc we agree with Jeff. Hubby Gleason 8, stage 3. Radiation and 3 years (so far) ADT. Hot flashes, loss of muscle and body hair, forgetful, sleep problems, etc. However, his goal is to enjoy his numerous hobbies and be there for his grandkids! So each person just needs to weigh the pros and cons of ADTand decide for themselves. There no right or wrong with this disease.

@jeffmark
I have similar results. Lots of exercise with few effects from ADT (Lupron). I do get tired in the afternoon, but I am 83 years old, so I can blame that on age. I get occasional night sweats, but no hot flashes.

@budmartin
If you get tired in the afternoon, make sure you do not sleep too long.

If I get tired, I will start a 25 minute timer. I find I go to sleep almost immediately and I wake up, and I feel pretty refreshed. Sleeping longer than an hour can mess up your rem, sleep, and cause you to not sleep as long at night, which then causes the daytime fatigue, which you then sleep too long and then you can’t sleep at night as long. Yes, it is like a revolving circle of fatigue.

I’m 78 in a week and I’m pretty active during the day. I hit the track every day and run a mile twice a day. I come home and I don’t have any fatigue at all. Just took a little time to build up my stamina. Of course at my age, I can’t run real fast.

@rbtsch1951
Hi, Your oncologists may not think much of my opinion but I thought I'd remark on the ADT (in my case, a 2 yr regime of Lupron, which I cut off at 18 mos instead of the 24 month term). (No Tomotherapy either). Gleason 7 (3&4), Prostatectomy at 72, 38 days of Photon radiation last Nov '24, yielding PSA of 0.064 and 6% Testosterone.
Many of the symptoms are requisite to other testimonials on this site.
My oncologist & radiologist were not entirely honest with me about being able to rebound from the effects of this dreaded therapy. Yeah, I know, Count my Blessings and I do!
But I was led to believe that I "could" realistically start to REBOUND a matter of weeks beyond my early termination of the Lupron. Nope, not even close. From this wonderful online support testimonial, I have learned that many of you have described lengthy timelines or in some cases, never being able to rid these debilitating body dysfunction, I am one of them. Forget about the bedroom for anything other than sleeping - Gone. Horrible, constant sweating Heat Attacks causing clothing to be a curse one minute and nothing to mitigate them. Loss of muscle mass that I have attempted to overcome with exercise but is nearly laughable while my GP warns me to be careful as I could injure myself given my depleted T levels for the last 2 + years.
For me, I am thankful that all of the current testing indicates low risk of cancer currently, but offset by NOT having much of a life. Food doesn't even taste good anymore so great for a weight loss program. My cure appears to be in place and I'm thankful. Finding "Life" again is a constant battle. Hope you find your happiness as many of these former patients seem to be chronicling on this 'blog'. Sorry to be so descriptive but every day is not "living" for me. Thank you and much blessings to you on your journey. rlm

@madpuppy74

I am so sorry to hear your course has been so difficult. I recognize that people vary in their response to and tolerance of ADT. I am early in my course (just 7 weeks lapsed now from my first Lupron injection) and the hot flashes are disturbing along with the loss of libido and associated ED. I will be switching to Orgovyx after my 3 month depot-Lupron is completed, which I’m told is more easily reversed when ADT is ended. Still I know there are no guarantees here, as there are none in life in general.

Few people understand what any of us are experiencing. I’ve learned that most people who ask “How are you doing?” only want to hear “I’m fine” and really don’t want us to unload the truth of our process.

Exercise, friends, hobbies and volunteer activities keep me going and give me purpose. But that’s not to say there aren’t times I feel despondent and question the compromises I have accepted. Even my spouse doesn’t know how to respond to my losses and needs, leaving me on my own to overcome my negative thoughts.

I believe in the science, but know that treatment recommendations are based on statistics and can never predict the outcome for an individual.

It’s easier said than done but “hang in there” and continue to find the glass half full rather than half empty.

@madpuppy74
I’ve been on ADT for almost 8 years. After surgery and radiation, its affect on my ability to get an erection is minimal in comparison to those two things. I’ve had prostate cancer for almost 16 years. I took Lupron for six years and I’ve been on Orgovyx For a little over two years.

While ADT did not cause me heart problems getting on abiraterone Gave me high blood pressure and multiple Afib events. I’ve been on a blood thinner for many years and it has resolved any problems I’ve had from afib. I also have to take three blood pressure medicines every day but my heart is in good shape now that I’m off Zytiga.

If you’re getting constant sweating, there are solutions. I got depo-provera Shots every three months and they pretty much stopped my hot flashes and sweating. Estrogen can also help. Speak to your doctor about Getting hormones to resolve it. Estrogen can cause gynecomastia, but depo-provera doesn’t. For a long time I would lay in bed At night and throw sheets off and put them back on, I do have a fan right next to me near the bed But I Seldom use it anymore. The main time I use it as after I run on the track, Yes, control over body heat is not the greatest so I sweat a lot after that run and the fan really helps.

It can take a year or more to have your testosterone come back to levels that’ll make you more comfortable. According to the PCRI conference, it will never come back to what it was before you had ADT, But it will come back. People Who took Orgovyx Have it come back faster.

I also used an Embrlabs.com Wave 2 device to stop my day and night hot flashes. It was very effective. I still use it though I don’t get hardly any hot flashes anymore.

My testosterone is less than five. I found out I couldn’t get off the floor without leaning on a chair or a bed or pulling myself up against something a year ago I went to the gym three times a week for an hour. After about three or four months, I could finally get up off the floor. I have built up my muscles and never had my oncologist tell me don’t exercise. I’ve increased the amount of weight. I’ve used for both arm and leg exercises since I started about a year ago.

I do run twice a day for 1 mile on a track, every day. I built up my stamina in a few months so that I can run without stopping. I’m also not winded after I’m done and my heart rate never gets very high.

One of the People that talked at the PCRI conference this last weekend was Robert Newton PHD from Australia. I’ve heard him at least three times now and he talks about how exercise extends the life of prostate cancer patients and can even stop it from getting worse. You should try to find some information about exercises by him. There’s a number of videos on YouTube. He Strongly emphasize the need to do weightlifting exercises. The information you got is just wrong and contrary to everything I have been hearing for the last five years about the need for exercise and involving weights in that exercise. It is essential.

After all these years on ADT, I have noticed no reduction in my ability to taste food. My wife creates a wide variety of meals for me and they are quite tasty. I’ve always been critical about food that was bland. I’ve had no problem getting spicy or flavorful food at home or at restaurants.