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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@hudsonlady

From Bill who experienced prostate surgery in 2019, the same as you with radiation concurrent with Orgovyx in 2022. 4.5 month's after stopping orgovyx, hot flashes finally starting to dissipate, still experiencing some fatigue but less and never experienced wooziness. Some trouble staying asleep with random aches and pains. Basically slowly recovering.

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Yes. Grateful, but annoying.
Agree, primarily the fatigue or simply less energy. When I walk, after about 10 minutes, I feel like I'm walking up a 20° incline and into the wind.
For how many months were you taking Orgovix?
I say wooziness, but it's just a feeling of being a bit off. Again, not very clearly defined.

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I have been on Orgovyx for 19 months, and have not experienced any hot flashes. My biggest problem is weight gain, and gyenecomastia which has been increasing over the past few months. I would appreciate hearing from anyone who is dealing with these two issues.
Thank you,
Philnob

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@michaelcharles

Yes. Grateful, but annoying.
Agree, primarily the fatigue or simply less energy. When I walk, after about 10 minutes, I feel like I'm walking up a 20° incline and into the wind.
For how many months were you taking Orgovix?
I say wooziness, but it's just a feeling of being a bit off. Again, not very clearly defined.

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Sounds familiar. 6 months on Orgovix
ending in early March.

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hot flashes I have been on lupron for over a year ,actually 15 months and that has gone. But, I also tried to go on erleada and it kicked my ass. terrible side effects, almost killed me. So , that kindof quieted down my feeling for powerful super drugs, which the latest generation of hormones are. I am still of a mind that I had overdosed them, not by taking a weeks worth of the apalutimide at one time. But I think the dosage for a person my size and age was all wrong for it. 240 mgs, 4 60 mg pills a day may have been to much .I intend to ask the oncologist if that has validity. I believe knowing my reaction to drugs in general that I should be taking one pill a day as opposed to four, I am a 143 lb 76 year old. Active fitness oriented man. Anyone have any response to that ?

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@philnob

I have been on Orgovyx for 19 months, and have not experienced any hot flashes. My biggest problem is weight gain, and gyenecomastia which has been increasing over the past few months. I would appreciate hearing from anyone who is dealing with these two issues.
Thank you,
Philnob

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My biggest problem too is also weight gain and gynecomastia, with fatigue. But 4 months ago I could walk 5 km in 50 minutes (I am 73 1/2 yrs old). I suffered an ankle fracture and for three months I couldn't walk. In these three months I gained 5 kg. I've just started walking again last 12 days and now am at 2 km in 25 minutes. I feel the only way we can fight our fatigue and weight gain is by walking and cutting down on carbs and sugars (which I have also done). In fact, my tummy got so bloated, I went and got a whole abdomen USG done, which returned normal 😄 .

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I am 76, gleason 9 aggressive, CR, locally advanced PC . I was on lupron and Erleada for 13 months with RP in the 6 th month. I have been off of meds now for 6 months, So far, good results. I gained weight, foggy, loss muscle, no energy and slept poorly while on drugs, it was not terrible side effects and the surgery and meds have had a beneficial effect on me and I hope that my present condition continues for a long time, but who knows!

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I'm 4 months past completion of Orgovyx, which coincidentally was a 4 months duration. This was in addition to radiation with ended about the same time as Orgovyx.

I'm surprised to still have hot flashes and low T, about 76 on last reading. The hot flashes seem more frequent than when I was actively taking the drug. I had asked earlier, to my Dr., for a Cialis script and took it twice, 10mg. I noticed no change and erections stayed about 60 to 70%, flashes unchanged. My lead Dr. advises patience and, if my PSA stays low, he'd consider some effort to boost T. He also said that I had to take Cialis for a period of time to see some results and I'm going to try it daily for a week. I started a day ago and noticed a slight improvement in blood flow. He also said, 'you have to be stimulated, it doesn't just work'...that I found hilarious. This Dr. is brilliant and, not only seems to know everything 'cold', but, always makes it funny as well...laughter definitely helps me.

So that's the plan for now: a week on Cialis and PSA/T test every three months. Thankfully, I cope pretty well with the flashes, but, hope they go away and T returns AM wood.

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@tjmayo

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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I was turned down for Orgovyx and within 2 days got approval on an appeal. Nurse was ON IT with having the appeal ready.
I will still have out of pocket expenses for the Orgovyx but it’s not thousands like some have faced. It’s hundreds per month. But with a history of cardiovascular issues it seemed to be the best choice.
Best wishes for a quick answer.
I’m 2 weeks into ADT - Eliguard then switch over and will start radiation soon. I’m 4+3.

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@chamblee54

I was turned down for Orgovyx and within 2 days got approval on an appeal. Nurse was ON IT with having the appeal ready.
I will still have out of pocket expenses for the Orgovyx but it’s not thousands like some have faced. It’s hundreds per month. But with a history of cardiovascular issues it seemed to be the best choice.
Best wishes for a quick answer.
I’m 2 weeks into ADT - Eliguard then switch over and will start radiation soon. I’m 4+3.

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Good luck, I tried everything, 5 different methods, to get the Orgovyx price down, but, ended up paying thousands. Thankfully, the price dropped a lot after the initial 'boning'...still ridiculous. I declared SS income only and Orgovyx said that alone was too much...go figure.

In any case, it seemed to work. I just hope to get my T back and stop flashing.

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@philnob

I have been on Orgovyx for 19 months, and have not experienced any hot flashes. My biggest problem is weight gain, and gyenecomastia which has been increasing over the past few months. I would appreciate hearing from anyone who is dealing with these two issues.
Thank you,
Philnob

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I’ve been on ORGOVYX for about 3 years now and have similar problems. Gained about 30lbs. Experiencing major fatigue issues but have discovered weight lifting and cardio alternate days makes a huge difference in dealing with the fatigue. Losing weight however extremely difficult. I work out about 5 days a week. Diet does seem to help but very slow weight loss about a pound a week with 1200 calories a day diet. Good luck and Keep fighting.

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