Hot flashes more than a year after ending treatment

@pesquallie, I noticed that you wished to post a URL to a Mayo Clinic News Network article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Allow me to post it for you.

Here is the link to the news story:
- Study Solves Testosterone’s Paradoxical Effects in Prostate Cancer https://corporate.dukehealth.org/news/study-solves-testosterones-paradoxical-effects-prostate-cancer

And to the actual study:
- Androgen receptor monomers and dimers regulate opposing biological processes in prostate cancer cells https://www.nature.com/articles/s41467-024-52032-y

I have to disagree with the statement about doctors not embracing advancing research. Research institutions like Duke, Mayo and others centers of excellence constantly pursue research to improve treatment approaches in efforts to develop more effective treatment and to reduce the burden of side effects for patients.

Understanding which patients benefit from which therapies and personalized medicine improves this experience. The Duke study sounds like a good discovery that hopefully will benefit patients (and providers). Please note that the study was conducted in the lab (in vitro) and not yet conducted in clinical studies with humans. That's when the rubber hits the road. 🙂

@jeffmarc

Thanks for the additional information. Reading the Duke paper alone would leave the average person like me, to believe that low testosterone levels due to hormone treatment would strongly increase the chances of aggressive cancer spreading in high-risk patients.

It seems that it is very difficult to properly classify each patient's cancer aggressiveness. My Gleason level indicated my cancer had reached the entrance of the seminal duct but not spread outside the prostate and I was rated as 3Tb. I had serious side effects from 44 radiation treatments (diarrhea and tenesmus), and the side effects from Lupron were even worse with heavy sweats 24 hours/day, frequent urination, severe headaches, body muscle and joint pain, and brain fog. It got worse every day, and I had to stop Lupron after 4 months. Now 4 months after stopping, I am just starting to get rid of the side effects and have had two PSA test < 0.1 ng/mL and two testosterone levels < 8.7 ng/dL. I will just have to wait and see what my test will look like in 3 more months.

@jeffmarc what is the cost for this device?

@colleenyoung

Thank you for the update. I tend to be pessimistic about my treatment because my family doctor discouraged me from having a PSA for 3 years during which time my PSA rose from a steady < 1.0 to 11.1. She did this because in 2014 the president's health committee recommended against PSA testing for men above 70. I was 82 when I finally got a test and then a biopsy with a Gleason 4+4. My bone scan was clear and my PET scan rating was stage T3b. I had 44 radiation treatments and 4 months of Lupron hormone. I had diarrhea and Tenesmus pain throughout my radiation treatment. After 4 months of Lupron treatment, I had serious painful side effects that included 24-hour sweats keeping me wet and restless at night, severe joint and muscle pain, headaches, pain at the injection sites, and urination every 2 hours. I had to stop the Lupron after 4 months because of the pain. Now 4 months after the end of Lupron treatment I am beginning to see a reduction in side effects. My urologist says that my side effects are abnormally bad and my recovery is slower than normal. I am hopeful but still very anxious.

@truly520 I suspect the B12 was something specific to me long term and had nothing to do with ADT but it may have contributed to how I felt or how my body didn't bounce back. // To answer your other question, when I got off of ADT and felt horrible (I was 59 and felt like I was about 90 or as if I had the flu every day), I told my non-Mayo urologist about it and he claimed he hadn't seen that before. So I went to my primary who did labs and sent me to a rheumatologist and a hematologist (based on labs). Then the rheumatologist sent me to an endocrinologist because of my low cortisol level. It was a crazy number of labs and doctors. But it ruled out a lot of other potential problems. And as I said, they solved the problem. Since then I found out from Mayo that I should have stepped down off the prednisone from the ADT despite the low dose. 17 months on prednisone is a long time. The Mayo PA said this was likely a factor.

@shelby29
Around $300. They do have sales from time to time with $100 off. I’ve actually posted it here when they’ve had them.

@vircet
I had a lot of problems with temperature control for years while i was on ADT. I would get hot really quickly, have to throw off all the sheets and blankets and then when I got cold, I could put them back on, but in the night. I’d start sweating so much the sheet would get wet under me. The wave device stopped the night problem.

This is all due to low testosterone. Something you still have. You can get your blood tested next time you get an PSA test and have a testosterone test included, to see where you’re at. Once you hit 150 it gets better.

After almost nine years of ADT It’s finally getting better. I don’t get hot as often even with my testosterone near zero.

I never turn the heat on at night. It seldom gets below the mid 50s outdoors here, even in the winter, I much prefer the house to be 66 to 68 to not get too hot.

Thanks Jeff