Resolution of Side Effects after Stopping ADT/Lupron

Once you begin TRT it is for life. Your body will not produce its own T while getting T from gel or injection. I could have waited another 6 months or more but it was fairly apparent that my testicles were permanently moth balled and on strike.

Lupron REALLY did a number on my mental health. The best way I can describe it is that I felt like I was a soulless husk just walking around observing myself rather than living. Orgovyx was better but by no means ideal.

All these comments on Lupron make me pause, my PS was in 8/24 then pet scan showed PSA .36 so was advised to get my first of 2 shots if Lupron then 6 weeks of radiation which ends in 2 weeks, I’ve suffered with diarrhea for over a month Sometimes getting up at night 6-10 times . I’m supposed to get a second shot of Lupron in 5 weeks. With all these comments I’m afraid to get it despite that my oncologist says studies show outcome show better results with a second shot . I’m a healthy 78 yr old fighting depression over no sex with my wife in 6 months and now maybe never again . Tempted to take my chances, I also regret not asking how long I might have survived if I refused everything. If 5-10 yrs I would take my chances and go on a one way fishing trip when my time was up

🤣Humor helps!

It does sound tempting to forego the second shot but no one has a crystal ball to say what the outcome would be.
Have you spoken to anyone about getting on Wellbutrin? Having your depression lifted will definitely improve the quality of your life and perhaps give you a clearer picture of what you want to do.
Not saying to do Lupron or not - we’ve had discussions on this board of the efficacy/necessity for ADT in the group of men aged 75 and above, and so far it seems to be a coin toss. It may not change the outcome one way or another…or it might??
I mean, it’s definitely a quality of life issue for you and you are the one who has to decide. My wife always tells me: In life you never regret the things you did as much as the things you didn’t do.
Yes, it’s as clear as mud but that’s all I’ve got…Best
Phil

Very true, I may try to see another oncologist and get a second opinion which might confuse me even more, thanks

My husband was diagnosed with a Gleason grade 9 prostate cancer nodule ( that had NOT spread outside of the prostate) and was treated with 9 months Orgovyx and 28 days of targeted radiation. The Orgovyx caused severe joint swelling and pain (along with the usual hot flashes , erectile dysfunction and organ shrinkage) and severe drop in RBC count, hemoglobin , and abnormal liver enzymes. Our doc insisted he stay on Orgovyx but my husband lost the use of his legs at 9 months which we eventually learned was due to 2 severe bone fractures in his sacrum which will NOT heal. He now has a blood infection due to depressed immunity but the risk/benefit of this ADT treatment was never discussed with us. I do not think the Testosterone numbers really say anything about the recovery times after ADT. Any info after stopping Orgovyx ( we are now 7 months since stopping) but side effects like fracture , loss of libido and anemia seem permanent. Any info for this caregiver?

Well, if you go that route may I suggest a younger RO - early 40’s or so? I say this because most older drs do things by rote; they have a treatment protocol they’ve gotten used to over the years and usually don’t deviate from it no matter what.
Younger drs. Are nurtured on newer techniques and research - in fact, most of them are required to publish and take part in clinical research during their training.
Ask yourself where you might be today had you gotten a second opinion from a younger surgeon- someone who might have taken your age into account. You might never have had surgery at all, right?
Probably ADT, but more likely Orgovyx and not Lupron and perhaps your side effects would have been less. Chances are if you are depressed you are in a funk and can’t be motivated into seeking out a second opinion, and I get that.
But as you’ve corresponded on this forum, I get the sense that you really want a do-over, or at least, change some of your decisions which were made by trusting in your doctors explicitly and not doing enough research on your own. That’s a mistake many of us older guys make - the doctor always knows best!
Well, you see firsthand what that gets you, OK?? At least now you still have the opportunity to take part in the decision making once someone new lays out the facts for you. But you’ll never know if you don’t try….best
Phil

My case study is amazingly similar; i.e. Gleason 9, Orgovyx nearing 9 months, 5 weeks/ 25 fractions- IMRT PROSTATE RADIATION and no metastasis. I am 2 months post radiation.
Orgovyx side effects have been mostly hot flashes that have now greatly subsided.
I had a sigmoid colon resection more than 2-1/2 years ago followed by a year of diarrhea. Now since radiation, the diarrhea has returned.
I am sure that my testosterone is non-existent. My testes have shrunk and erections are not happening ever. I don't even think about it anymore. I guess having no spouse to consider makes that easier.
I am 75. Not too active other than household chores and running errands to shop. I don't have a lot of energy and can sleep anytime day or night.
So overall, and by comparison to most others, I am doing pretty good. My concerns are the eventual return of colon cancer and the metastasis of my prostate cancer. It's all very worrisome.

I am curious as to the causes of the sacrum fractures? I assume that it is not trauma related?

I really want to say that your post was of great interest to me in terms of my own similarities.
But primarily, I do pray that your husband will see great improvement in all ways, including pain relief and increased mobility!
Blessings to both of you!!
PAUL

The sacral fractures are from the Orgovyx! So, not from a fall or trauma. As we have learned, Orgovyx can cause osteoporosis which should be monitored for severity during ADT
and if bone thinning is seen then a "pause" for treatment of the bone can avoid fractures.This was NOT done in my husbands case as his bone inflammation was trivialized until the 2 back fractures happened. Be careful with Orgovyx as this side effect is permanent