ADT, maybe not?

@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

I am 83 and had a PSA of 11.1, Gleason 4 + 4, Stage 3BT. After 44 radiation treatments and 4 months of Lupron shots I had to stop the Lupron. With radiation I had severe diarrhea and severe Tenesmus pain for about 4 hours every day. With Lupron I started sweating heavily to the point that I could not even have a sheet on me while sleeping because of the sweat. Severe headaches, aching muscles, brain fog, and urinary issues that only began to decline 7 months after my last 3-month Lupron shot. Still having hot flashes and sweating all day long. I stay in shape with an hour long work out at least 4 days per week. My first 2 PSA tests were < 0.1 and testosterone around 8, so my numbers are good. I wish I had done Proton therapy instead of radiation. Still very anxious and sleep poorly getting up 3 times a night. Harvard Men's Health and Duke studies are pushing for a reduction in ADT use because of the severe side effects. Ed

@pesquallie
I had terrible hot flash and sweating problems with Lupron. After A year my oncologist recommended a depo-provera shot every three months.

They almost completely stopped my hot flashes and night sweats. You should ask your doctor about it.

@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

@budmartin

I am 83 and had a PSA of 11.1, Gleason 4 + 4, Stage 3BT. After 44 radiation treatments and 4 months of Lupron shots I had to stop the Lupron. With radiation I had severe diarrhea and severe Tenesmus pain for about 4 hours every day. With Lupron I started sweating heavily to the point that I could not even have a sheet on me while sleeping because of the sweat. Severe headaches, aching muscles, brain fog, and urinary issues that only began to decline 7 months after my last 3-month Lupron shot. Still having hot flashes and sweating all day long. I stay in shape with an hour long work out at least 4 days per week. My first 2 PSA tests were < 0.1 and testosterone around 8, so my numbers are good. I wish I had done Proton therapy instead of radiation. Still very anxious and sleep poorly getting up 3 times a night. Harvard Men's Health and Duke studies are pushing for a reduction in ADT use because of the severe side effects. Ed

@madpuppy74
I think your post reflects what many of us on MCC promote. That what one person taking ADT or hormone treatments side affects will not determine what yours will be. All bodies are different and what one will suffer from side affects others will not.

I see many post saying not an issue takine hormone treatments and then we read posts like yours saying "be careful." Hormone treatments are serious drugs and have side affects. Be prepared for those side affects and not rely on what outcomes others has citing little or no side affects or dealt with them with little discomfort. That might suggest you will have the same side affects when it does not.

In this case the old caveat "prepare for worse and hope for the best is very appropriate." I did not have hormone treatments. I was originally prescribed them before I had Decipher test. My Decipher came back low risk not original intermediate risks biopsies result gave so the hormone treatment recommendation was removed.

@jc76 I wish my husband had your experience back in 2021 when his PSA spiked. He had his only biopsy in 2019 that showed low risk & MRI that showed no metastasis. The urologist said the CT showed suggested mets to lymph nodes so he started ADT immediately & put us in shock w/death threats! Then the oncologist put him on Zytiga even after the CT showed no mets 1-1/2 mo after 1 Lupron shot. So then, each urologist and oncologist we went to over the next 4yrs just carried on with the Lupron every 3mo and Zytiga+Prednisone every day. I asked to stop Zytiga after 3yrs and his PSA every 3mo stayed undetectable! We have been offered no further testing in all this time. Except that I asked to have the genetic testing & it came back low risk, but they never offered the genomic testing (in case treatment could be improved for his prostate cancer if there is any left!) We are in the process of stopping treatment & going back to Active Surveillance. Sure need prayers. Thanks!

@jc76 I wish my husband had your experience back in 2021 when his PSA spiked. He had his only biopsy in 2019 that showed low risk & MRI that showed no metastasis. The urologist said the CT showed suggested mets to lymph nodes so he started ADT immediately & put us in shock w/death threats! Then the oncologist put him on Zytiga even after the CT showed no mets 1-1/2 mo after 1 Lupron shot. So then, each urologist and oncologist we went to over the next 4yrs just carried on with the Lupron every 3mo and Zytiga+Prednisone every day. I asked to stop Zytiga after 3yrs and his PSA every 3mo stayed undetectable! We have been offered no further testing in all this time. Except that I asked to have the genetic testing & it came back low risk, but they never offered the genomic testing (in case treatment could be improved for his prostate cancer if there is any left!) We are in the process of stopping treatment & going back to Active Surveillance. Sure need prayers. Thanks!

@jonesfit65
You have my full prayers. I have had excellent medical care and can only imagine how you and your husband are feeling.

It appears you have been going to different urologist and oncologist but still not comfortable or trusting your are getting the best care and tests. Have you explored getting a second opinion from a major medical instutition? Usually you do not need to have a in face appointment as your medical records can be sent there.

You mentioned having the genetic test and came back low risk. Was that the Decipher? But the Decipher test would have been on biopsies taken 6 years ago and not reflective of today.

I must advise I do not have personal experience with hormone therapy. I can only reflex on what I have been briefed on by my medical doctors, what I have in research, and what I have read on MCC. Hormone treatments are usually going to dramatically reduce PSA.

But then I think I read correctly after you stopped hormone therapy 2.5 months later your PSA was undectectable. If I read right his tests showed metasis? Is that correct? Back in 2019 do you remember his Gleason Score? It is the basis of treatment options and other testing needed to clarify or add to that diagnosis.

Sounds like you and your husband are having really terrible time with his PC diagnosis and treatment options from his doctors. Mental health is just as important as our physical health as both will have dramatic affects on each other.

Do you have a primary doctor you like and trust? Discuss with him/her about second opinions from a major medical institutions and be honest about the standard of care you feel you are getting now from his urologist/oncologist

@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.