Dx in 8/2020 with Gleason 8. Had RP 11/2020. One lymph node involved so MO/RO at MGH recommended aggressive treatment. Went on Lupron and Abi for 2 years and 39 radiation treatments. All drug treatment ended in April of this year.
Hot flashed started after a few months on Lupron and were bearable. In last few months, they have increased to the point that they are very frequent and interfering with sleep.
Looking for suggestions to combat this. MO is excellent but does not seem to have any great ideas on this issue.
Thanks
Written by
reichel
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I’m on Eligard and Nubeqa with testosterone too low to measure. Hot flashes for me also, more so at night. Some things that have worked for me… I started with Estroven but at urging of my MO I switched to black cohoosh supplement. Recently added Rhubarb Extract. Both very inexpensive. I think these supplements take a while to start helping. Not immediate. We have overhead bedroom fan and run AC all the time here in Georgia. . Sleep with no shirt. I find that by managing taking sheet / blanket on and off when I start to feel warm I can get a pretty good nights sleep. For me, back of neck and legs seem to be parts of my body that trigger, One other thing … a good and safe long term sleep aid is taking one 25 mg Benadryl before bedtime. You can get a big jar of them for $6 at Costco.
I have not discovered any food or drink triggers. Some say alcohol, spicy foods, chocolate, etc. but I haven’t found a connection at this point.
On Venlafaxine for almost 12 years now. Dr prescribed it for hot flashes and emotional roller coaster from ADT. Reduced hot flashes and worked wonders on the emotional roller coaster I was on. Greatly improved my QOL.
i found on Venlafaxine i got really depressed like i was sleep walking so i stopped after 5 days so now i just put up with them but boy its a rough one everyday.
Sorry to hear it did not work for you. I was put on 75mg and stayed there for about 10 years, on 150mg for the last two. At the beginning Dr. had me try 150mg but it made me lethargic.
I read recently that Gabapentin is being used to treat hot flashes. I’m taking it for neuropathy. My hot flashes were never too bad but I think they might have improved somewhat. I am getting more/better sleep.
I tried the other things mentioned above but the estradiol patches were the only thing to take the hot flashes away completely. Took just over a week for mine to be gone completely.
Just read about new drug approved for Hot flashes called Veozah from Astellas expected to cost $550 a month.The was approved for women going through menopause but perhaps it could be used by men?
Just wanted to say this new drug uses a new approach to cut off the brain signals that cause hot flashes. It interrupts that process. Look it up and read about it.
Sage tablets and evening primrose oil capsules have helped reduce hot flushes a lot for me. I also have a fan in my bedroom which I turn on if I do get one at night but these are now very rare with the above supplements.
I know that some have tried the Embr wave device and didn’t find it worked for them. I found that it worked for me. This would be a non drug alternative.
My hot flashes are very similar to what you described and it was getting to be just too much at night. I had some gabapentin left over from a previous need and started taking one at bedtime a week ago. First 24 hours I had zero hot flashes, since then they have increased to 3 - 5 times per day (2 or so at night), but down from 10 - 12 per day. I'll stick with it for now.
There aren't any GREAT solutions. Hand held fans and a neck fan help. Get them on Amazon. Keep a wash rag in your back pocket. Ceiling fan in the bedroom and a standing fan with remote control next to your bed. Some guys think the hot flash drugs work but I had no luck with them. Sorry but as long as your testosterone is next to zero you're going to have hot flashes amoung other symptoms. It's not pleasant but it's better then letting the cancer spread.
Dear epfj3333, reichel, and others reading this thread,
I rarely post to any online chat groups, but here goes.... [Sorry for the long reply]
The hot flashes are NOT directly due to loss of testosterone, but due to the secondary loss of estradiol. We men naturally have estradiol in our bodies made from our testosterone.
One would thus expect that some transdermal estradiol would help. ANd that is indeed endorsed by several of of the folks that have contributed to this thread.
Transdermal estradiol is an off label use for men who have hot flashes from ADT. But the product is FDA approved for for that specific purpose for women with hot flashes at menopause,
If folks on ADT are suffering from hot flashes, they may want to explore that option with their MDs. There is a directly relevant 2022 abstract of a clinical trial lead by Dr. Nick Russell in Australia accessible here:
It documents the effectiveness and safety of transdermal estradiol gel for the control of hot flashes in men on ADT. You could bring the abstract to your oncologist for discussion.
The sample size in the Russell et al. study is relatively small because the study got disturbed by COVID. But it is otherwise a good, solid, randomized, clinical trial.
Some folks fear that estrogens (like estradiol) are dangerous for PCa patients because they could promote PCa growth. That doesn't appear to be a problem when the cancer is hormone sensitive. But you can explore getting some genetic screening done to make sure you don't have an uncommon, estrogen sensitive form of PCa. If you have a substantial family history of breast and/or PCa you should probably get some screening anyway.
One concern about taking estrogens is that they can increase the risk of blood clot formation. But there have been several studies out of the UK that show that the transdermal route is safe. The problem is not estrogens per se, but oral ingestion of estrogenic compounds.
Agree with the others that estradiol patch provides the best relief and also helps protect bones. If you try venlafaxine keep close watch on blood pressure. Sent mine through the roof.
I’ve been using estradiol patches for about 9 years now, originally prescribed by Snuffy Myers. I used to get extreme hot flashes, I once counted 15 in one day. Since using estradiol patches they are virtually nonexistent. And it has the added benefit of promoting good bone health which can be impacted by ADT. There’s no cardiovascular risk sink they are absorbed through the skin and not the liver. Snuffy has several YouTube vids on the use of them.
If he starts talking cardiovascular risks be prepared to explain that while that’s true for the pill form, it’s not true for the patches. Watch the Snuffy videos and research on the internet.
I use one of those fans that you can fill with water that I use mainly during outdoor activities like going to parks etc. I keep it at bedside so all I have to do is reach down turn it on and start spraying. It helps some.
I used to have intense hot flashes, sweat would pour off. They have lessened almost totally over time. One thing that was a byproduct of intermittent fasting a few years ago was lessened hot flashes. Food was a trigger. You might try some fasting just to get relief.
Six months into a two-year Lupron + Abi + Prednisone regimen. Hot flashes, fatigue, fog brain, sleep disruption throughout.
Started taking a one a day Costco/Kirkland brand organic/food based multi-vitamin two weeks ago, and every one of those symptoms disappeared three days in. I'm feeling as well or better today than before starting ADT.
Spoke with my Medical Oncologist last week who said he is fine with my taking multi-vitamins (was thinking there had to be a catch). Starting radiation therapy in 2 weeks, and they may force me to stop taking them during those 8 weeks... will let you know if the symptoms return.
Have no idea if it will work for others... definitely working for me (fingers crossed).
Norwegian Kelp has worked for me and also for my wife who is undergoing her menopause. Inexpensive. Can be found on Amazon. Saw a difference in about 4 days if I remember.
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