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Is this normal on ADT? Body hair gone
Prostate Cancer | Last Active: Sep 23 2:56pm | Replies (76)Comment receiving replies
I was on Orgovyx and Erleada for 6 months last year. My cancer had metastasized to a lymph node in my chest,I had some similar side effects and more, muscle loss, bone density loss, hot flashes, shrunken testicles, increase in breast size, loss of body hair and pretty bad joint pain. By month four on the drugs I wanted to stop. I felt like I was living thru a Twilight Zone episode and was becoming an involuntary transsexual. But I stuck it out for the full six months because it was part of a clinical trial. Because I was on two drugs I really don't know which one gave me what side effects. Once I stopped it took about 6 month to feel normal again. My body hair came back fuller and darker.
My PSA continued to go up rapidly once stopping the drugs. And I knew that they would be putting back on some sort of ADT as my PSA continued to rise. I advocated for myself to get treatments to prevent further ADT induced breast growth (three rounds of radiation). The Radiation Oncologist that did the preventative radiation said it was common practice back in the day when the only option for advanced PC was actual castration, He also mentioned that the reason that my left breast was larger than the right one was because the right one had been radiated when they were radiating the lymph node tumor in chest.
I have been back on Orgovyx for 6 weeks now and this time coupled with Extandi. So far hot flashes mostly at night or if I am working outside in the heat. I am beginning to feel the loss of muscle strength, and some minor joint pain as well. My apartment is above my antiques shop ( I live in a 140 year old General Store building) it is 21 steps up or down. I decided to expand the little studio apartment on the 1st floor while I was off the drugs and feeling better. If things got as bad as they were on the last treatments I have the option to live down there for awhile. Part of me is still in disbelief that I agreed to chemical castration again after knowing how it affected me the first time...
I am 65 years old and four years into treatment. I had RRP, followed by 34 rounds of salvage radiation, that followed by the clinical trial (Orgovyx,Erleada, & radiation to the tumor in my chest). My Oncologist says that I have had 3 failed curative attempts and my cancer is considered incurable. As a single gay man with no children and little family I need to decide how much more treatments I will agree to. I feel so much better when I am not on any treatments. Right now the math isn't working for me; 6 months of treatment with all the nasty side effects and 6 months to feel normal again for a couple months, then back on the drugs that make me feel like shit. The treatments are hell on my body and wont cure me. I need to decide if living a few months longer and feeling like crap is worth the pain...
Replies to "I was on Orgovyx and Erleada for 6 months last year. My cancer had metastasized to..."
Hey Alden, So very sorry to see this living hell you are going thru. I don’t think I’ve ever stopped to think: what if this doesn’t work? Never think that no matter what you do this f****ing thing just keeps coming back.
FWIW, I read awhile back that in England, a patient with a similar condition as yours was given a blast of ADT, which wiped out all his T - possibly for good.
Then he was given a large dose of synthetic T and after a few weeks his PSA went to ZERO. His doctors declared him ‘cured’. Seems almost hard to believe but the article was in the London Times or some other reputable publication - not some bullshit blog.
Anyway, the closest I could find to this treatment was ‘bi-polar’ tx., which as others have mentioned, is an on/off type ADT regimen. But this treatment involved exogenous Testosterone - NOT the patient’s own. Could it be that our own T mutates and becomes the actual carcinogen or initiator? Way above my pay grade!
But at the time I did find that Johns Hopkins was also looking into this treatment. Might be worth doing a little digging and see what you come up with. Not trying to raise hopes or play doctor - just passing along some info that might or might not be useful. All the best to, my friend, and keep hanging in there - you sound like a real fighter to me!!
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Time to evaluate the value of living.
Treatments may not cure you but I am in the same condition, can’t be cured, but still alive with no cancer pain after 14 years, now 76 Had prostatectomy, then salvage radiation.
I have been on ADT since 03/2017 and along with Zytiga 4 years later and Darolutamide 2.5 years after that my cancer is undetectable for the last 10 months. It will come back, but there are treatments I can take when that happens.
Yes ADT isn’t fun, I get hot flashes and brain fog and muscle weakness/deterioration, but I exercise every day and do weight training three times a week and it keeps me going.
You can look into getting your metastasis zapped with SBRT if they come back. I did that.
If I stop with my drugs, my PSA rises right away, maybe the same for you. You can get accustomed to the drugs, it’s never perfect, but with exercise it can feel a lot less draining. Going on and off the drugs can make you live a lot shorter because they are not as effective when you stop and start.
Don’t give up.