Hot flashes more than a year after ending treatment

Posted by truly520 @truly520, Oct 28 12:13pm

My husband is still suffering from strong hot flashes after ending his treatment over a year ago. He can’t sleep through the night which means he’s exhausted all day. Has anyone else experienced this? He had a prostetectomy in 2018, then radiation and hormone therapy in 2023-4 when they discovered cancer cells in one lymph node.

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Not the news I wanted to hear on hot flashes. My Lupron shot was 2 weeks ago and the hot flashes started about a week or so after that. I'm having 6-8 per day, plus usually at least one at night. Radiation will begin in 4-5 weeks. I'm in front of a fan almost all day. I'd wish the hot flashes would go away but I'd be concerned about what would replace them. #CancerSucks

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Profile picture for anosmic1 @anosmic1

Not the news I wanted to hear on hot flashes. My Lupron shot was 2 weeks ago and the hot flashes started about a week or so after that. I'm having 6-8 per day, plus usually at least one at night. Radiation will begin in 4-5 weeks. I'm in front of a fan almost all day. I'd wish the hot flashes would go away but I'd be concerned about what would replace them. #CancerSucks

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@anosmic1 I hope your experience with your cancer treatment goes well!

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Profile picture for truly520 @truly520

Thank you. His testosterone was low at his last oncologist visit. I think he would be leery of getting injections but I will raise that thought as well as the device you described.

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@truly520 Instead of testosterone injections (my testosterone level was below 100 after 2 Lupron injections and 44 radiation sessions) and I was having muscle loss and very frequent hot flashes, I was very cautious about getting the injections and wanted a better way to control how quickly and to what degree my testosterone level went up, so I did lots of research. After reading lots of medical journals I decided to use Testosterone Gel (1.62%). It's convenient, easily controlled, and very effective. My RO and Urologist agreed that it was a good solution. The usual instructions are to rub one pumping of the gel on each shoulder and upper arm each day, but I do 1 upper arm and shoulder every other day. My testosterone level is now in the 500s (where it's been for 3 years, which is great) and my PSA has consistently been below 0.01 (which means "undetectable"). If my testosterone lab test shows my level is getting too low, or too high, I simply adjust the application frequency or do both arms for a few days. There's no way your husband can have such control if he gets testosterone injections. Your husband should discuss this solution with his doctors.

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@truly520 I can tell you that when I stopped ADT after 17 months on it, I felt much worse (body, joint and muscle aches) for about 3 months until an endocrinologist used an injection ("stim test") to get my adrenal glands to produce cortisol at the right levels again. That really helped. Discovering that my B12 was low may have also helped. My aches subsided within the next weeks/month. I guess I'm just pointing out that ADT causes all sorts of other delicate systems in your body to adjust and it takes time or sometimes intervention to get things to be working somewhat normally again as I understand it.

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Profile picture for jbnewby1313 @jbnewby1313

Mine took around 18 months to stop. The started to really tone down at 12 months then it was a few here and there. Totally clear and feeling good at 21 months. STAY STRONG.

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@jbnewby1313 Edward

Duke has recently published a study that says the use of hormone treatment as practiced for the last 20 years is backwards with normal testosterone levels best for aggressive cancer and low testosterone best for less aggressive cancer.
Most doctors are ignoring this new revelation and are still following the practices developed 20 years ago. If Duke is right, then hormone treatment should only be used for low levels of cancer.

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Profile picture for pesquallie @pesquallie

@jbnewby1313 Edward

Duke has recently published a study that says the use of hormone treatment as practiced for the last 20 years is backwards with normal testosterone levels best for aggressive cancer and low testosterone best for less aggressive cancer.
Most doctors are ignoring this new revelation and are still following the practices developed 20 years ago. If Duke is right, then hormone treatment should only be used for low levels of cancer.

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@pesquallie
Will you please share the study or the name of the study? Thanks

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I was on Lupron and Abiraterone for 3 years. I have been off for a little over 1 year. I still have hot flashes, but the frequency and intensity has gotten better in the last several weeks,

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Profile picture for jbnewby1313 @jbnewby1313

@pesquallie
Will you please share the study or the name of the study? Thanks

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@jbnewby1313 Edward

This site will not allow me to post web site information directly. However, if you google "Study Solves Testosterone’s Paradoxical Effects in Prostate Cancer
Published September 04, 2024 | Updated September 04, 2024" you should find a number of sources reporting on these findings. I suspect most doctors will not want to discuss these findings because it makes past practice look bad.

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Profile picture for pesquallie @pesquallie

@jbnewby1313 Edward

Duke has recently published a study that says the use of hormone treatment as practiced for the last 20 years is backwards with normal testosterone levels best for aggressive cancer and low testosterone best for less aggressive cancer.
Most doctors are ignoring this new revelation and are still following the practices developed 20 years ago. If Duke is right, then hormone treatment should only be used for low levels of cancer.

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@pesquallie

While this test does show that 1/3 of men could benefit from NOT having 24 weeks of ADT the biomarker that can tell who that one third are, is still not available. 2/3 of men in the study did benefit from ADT for 24 months.

“About two-thirds of the men had a positive biomarker, meaning that they benefited from the two years of hormonal therapy,” said Andrew Armstrong, MD, director of research for the DCI Center for Prostate and Urologic Cancers. “But one third of the men did not—they had no added risk of cancer spreading or coming back. That would save a third of all high-risk men that extra 18 months of hormonal therapy.”

We sought to develop a biomarker using tissue that could identify patients that really need those two years of hormonal therapy, or patients that could have excellent outcomes and not have to spend two years on hormonal therapy,” Armstrong said.

While the development and validation of the biomarker is complete, the team is now moving toward commercialization and creating a product that can be approved and used by doctors.

More information is available in this link
https://www.dukecancerinstitute.org/blogs/ai-tool-may-help-some-prostate-cancer-patients-avoid-hormone-therapy

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Profile picture for stuartmpls @stuartmpls

@truly520 I can tell you that when I stopped ADT after 17 months on it, I felt much worse (body, joint and muscle aches) for about 3 months until an endocrinologist used an injection ("stim test") to get my adrenal glands to produce cortisol at the right levels again. That really helped. Discovering that my B12 was low may have also helped. My aches subsided within the next weeks/month. I guess I'm just pointing out that ADT causes all sorts of other delicate systems in your body to adjust and it takes time or sometimes intervention to get things to be working somewhat normally again as I understand it.

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@stuartmpls that is really interesting. How did you decide to see an endocrinologist?
I will suggest that my spouse have his B12 level tested.

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