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Reversal of penile shortening after stopping Lupron
I am a 71 yo diagnosed with Gleason 9 PC in August2021. Had RP 10/21. Six months post op PSA rose to 0.37 and a PSMA PET revealed a single met to my T8 vertebral body. Was treated with SBRT. Four months later PSA had risen to 4.5 (yikes! rapid doubling time) and repeat PSMA PET revealed positive single lymph node in pelvis with no activity at T8. Referred to Medical Oncologist.
After much research on my part I chose Dr. Pienta and D. Reyes NP at Johns Hopkins. They recommended immediate triplet therapy-Lupron, Darolutamide and Taxotere chemotherapy. I completed the therapy (Lupron continued) in December 2021. My PSA became undetectable after the 2nd chemo treatment and has remained so. I then had full pelvic radiation to my pelvis (37 treatments) in March-April 2022. I was taken off the Lupron after one year; my last 3-month injection was July 2022.
I have experienced the usual side effects of Lupron-hot flashes, fatigue, mental fog, muscle loss etc. I expected testicular atrophy but I didn't expect penile shortening. I have rice read this is a side effect. Have others experienced this? For those that have discontinued ADT/Lupron, is it reversible and how long does it take? March 2024 my PSA remained undetectable and my Testosterone had risen from < 3 to 31.
Having cancer, especially Stage 4, is bad enough. But the side effects associated with treatment (loss of ejaculation, ED, genital shrinkage) have really added insult to injury.
Any comments would be welcome. Thanks!
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@psmick
Thank you! I have many friends that took Lupron after age 80 and some had major problems like me while others only had minor issues. There seems to be a lot of variability in what urologists recommend.
@psmick
I would love to see the Mayo recommendation against ADT if over 80. I am 83 and have many friends my age who had ADT after radiation treatment and had serious side effects. I had to quit at 4 months of Lupron due to what I felt was life threatening side effects. Thanks for your information.
We are all unique, but I experienced testicular shrinkage but no penile shrinkage from my lovely three years on ADT (Lupron, Abiraterone and Prednisone). My secret: Tadalafil 5mg daily, penis pump several times a week, regular sex without penetration (my wife is an angel!). I have been off ADT for a year and had a IPP implant a year ago so things are looking up. (pun intended). There are numerous videos on YouTube that discuss penile rehabilitation.
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2 ReactionsI’m at 12 months on Orgovyx and am being insulted, too. I hope there’s recovery when it’s discontinued around my 75th birthday.
@jimgaudette Although I am not 20 again (I am 75) the ability to have sex with penetration again has helped my mental and emotional health greatly. If you are able to have an orgasm and have a partner, talk to your urologist about an IPP implant.
Guys, I am sorry to see that there are so many with the same side effects. I feel that we should / could write a book. Sadly, the medical community refuses to be transparent about the effects of Lupron on a normal ( except for PC ) male. I can almost hear the chuckles after we take the shot.
While I ultimately would have opted for the treatment, rather than die, I feel it is a real disservice to withhold information that needs time to digest.
I am tempted to call my Dr about the Cialis / pump regimen rather than live my days out with a pet turtle.
The frustration is compounded in situations where urinary urgency is high and you cannot locate your penis.
Personally, I have become very outspoken with my circle of friends and spilled the beans about what we have all gone through. Healthy men need to hear the truth before they too are lied to.
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8 Reactions@computerbob
In case you missed some of the side effects
Due to their different black 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
Difficulty in breathing
Joint pain
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 run on the 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.
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. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.
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