Hot flashes, fatigue 4 months after radiation and Orgovyx

Posted by hudsonlady @hudsonlady, May 19, 2023

Husband still experiencing debilitating hot/cold flashes, fatigue, various aches and pains 4 months after successful treatments ended. Is there any relief available?

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I have had hot and cold flashes for years after 35 radiation treatments and treated with Lupron. RO prescribed Megestrol 20mg. Was on it for 2 years and doc said to stop. Still having hot flashes and may ask RO if I can take it again.

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Successful treatment is a reason for celebrating, so nicely done!

Hot/Cold Flashes --- My suggestion is to figure it out and a big part is accepting it as well. My approach is the following: Don't use the heat in the car, always run cold. Have cold water available at all times and when a flash starts to develop, put a cold bottle on the back of neck, or a cold towel on far head. You can slow the hotness so that you don't sweat, and the sweat is what leads to the cold flash.

Fatigue --- I'm still figuring this one out!

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I’m getting ready to take Orgovyx for 6 weeks prior to proton radiation and stay on it for two years. Can you share about the fatigue ? Is it a nuisance or really bad? Any tips for dealing with it ?

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My research turned up an article where a man my age, 72 at the time, took 37.5 mg of Venlafaxine twice daily to eliminate the hot flashes. It works well for me.

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@tjmayo

I’m getting ready to take Orgovyx for 6 weeks prior to proton radiation and stay on it for two years. Can you share about the fatigue ? Is it a nuisance or really bad? Any tips for dealing with it ?

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tjmayo:
Orgovyx 3+ mos; has not been bad for me. Definite changes, but liveable/manageable.
Clearly men respond differently.
Initially I felt "woozy" or just a bit "off". Some call it dizziness and I have a friend who fell, so take note.
Fatigue: feel maybe 10 - 15% less energy? I walk most days and lift light dumbells 2 - 3 times weekly.
Everyone recommends exercising or continuing your exercise.
Now in 4th month and just completed radiation treatment, which can exacerbate fatigue. Begin my 50 min walk and after 10 mins, feel like I am walking into the wind or up a 20 degree hill. My lifting routine has become more challenging. Try to push thru.
Hot flashes: mine have been mild; I feel warm and suddenly realize that it is a hot flash. Off goes the sweatshirt or blanket!
I am 73 and my age related "absent mindedness" has become exacerbated. Also, you may be more "difficult" and short tempered (think women in menopause).
As most men will advise, try to take care of yourself: eat healthy, exercise and try to maintain health.
Prayers for you and all fighting this insidious disease.

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Thank you for this. Very encouraging.
That’s what I’m hoping for - ability to continue even if I have to push through the fatigue and keep up my daily 25 min workouts and back exercises.

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@tjmayo

I’m getting ready to take Orgovyx for 6 weeks prior to proton radiation and stay on it for two years. Can you share about the fatigue ? Is it a nuisance or really bad? Any tips for dealing with it ?

Jump to this post

I'm in the same arena, one year in to a two your prescription.
The initial reaction is a little shocking....
The fatigue was not all that bad, just push through it. The hot flashes were fairly intense initially but it seems that they've either diminished over time or I've gotten used to them.
Testicles shrink up, "what's a libido?"

Now it's really tolerable, you just get used to the new "normal." I work out for about an hour with weights 4 times a week and run a couple miles at the end of each session. That was made difficult as the radiation sessions ticked by the fatigue they caused, but bounce back was pretty quick for me.

I bike ride, motorcycle ride and am back to work. Just got back from a great scuba diving trip with no issues that I could feel! You just have to push through it and stay active / enjoy yourself wherever you can!

Best of Luck to you!

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Seem this happens to just about everyone. Has he had a testorone test?

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@tjmayo

I’m getting ready to take Orgovyx for 6 weeks prior to proton radiation and stay on it for two years. Can you share about the fatigue ? Is it a nuisance or really bad? Any tips for dealing with it ?

Jump to this post

You don't say your numbers but google the article Radiotherapy with or without androgen deprivation therapy in intermediate risk prostate cancer. It shows almost no difference in outcomes depending upon your age. If you are over 70 there is almost no difference.

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I’m 71 and had a rising psa for several years - when it got to 5 I had a standard prostate biopsy 12 samples - no cancer and an “all clear”. That was august 2022. PSA kept going up so I had a fusion biopsy in January 2023 which revealed 4 samples out of 13 with cancer - 1 was Gleason 7 (4+3) and 3 that were Gleason 8.
Urologist mentioned surgery, HDR Brachytherapy, x ray radiation - recommended radiation. Did not mention Proton radiation as an option. I had a consult with the radiation oncologist and also got a second opinion from proton therapy at UFHPTI In Jax. Decided on proton since they can stop radiation at the tumor area and limit radiation exposure to surrounding tissues. At this point I had a “tidy” cancer confined to the prostate with no metastasis and all clear body bone scan and all clear pelvic scan. Treatment was to be proton radiation for 6 weeks followed by 6 months of ADT.
They did a PET scan of my whole body to confirm no metastasis. That showed I had prostate cancer at 7 lymph nodes distributed on both sides of my prostate and also lower abdomen. Also suspicious spot in my lung.
This was a shock to me and surprise to the docs.
This changed my upcoming treatment to 6 weeks of ADT (Orgovyx plus Zytiga) followed by 8 weeks of proton radiation and staying on both ADT meds for two years.
I’m waiting for the Orgovyx to be approved by my Medicare and AARP United Health Plan medical policy “G”.

It’s been 1 1/2 weeks since the doc told me the PET scan result and said I needed to be on ADT immediately. It’s making me nervous that every week goes by my cancer is growing. Hopefully will hear tomorrow about the approval for Orgovyx so I can start.

I’m trying to brace for two years of ADT and prepare as best I can.
I workout every day with a 30 minute dumbbell routine and back exercises. Also ride bike 5 to 10 miles 2 or 3 times per week.

That’s my situation, any comments or suggestions are welcome.
Thank you all
Tom

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