Orgovyx.......... not so great. Radiation.....almost pooping my pants!

Posted by Chip @chipe, Apr 30 1:53pm

Hi again, all. I started orgovyx on April 1st. LOL, yeah, April Fool's Day. 🙂
I have experienced dizziness; the first 2 weeks were bad. It seems to be resolving, but it's not completely gone.

I have been experiencing wicked and frequent (every 15 minutes) hot flashes. So much so that during some of them, sweat is pouring down my head, and I soak my shirt. The worst ones come at night. I have just ordered, on a 14-day trial, the Embr Wave 2 and am going to try that after I received this from my urologist:
"With positive lymph node involvement, plan is to have him on at least 1 year if not 2 years of ADT. Whether this be with oral agents such as Orgovyx or IM agent such as leuprolide, hot flashes unfortunately are a common side effect of such medication.
Treatment of hot flashes with ADT treatment can be challenging. Numerous medications are often utilized with variable improvement. Options include Megace, gabapentin, and even SSRIs at times.

I will trial Megace 20 mg daily for now and see how that works for a few weeks. Patient should be counseled that there is a small risk of DVT with Megace utilization."

I chose NOT to go with Megace due to its list of common side effects and opted for the Wave. I am seeing my PCP tomorrow and will ask her for Gabapentin. I am already on an SSRI (maybe ask to increase the dosage?). I have also purchased a small cooling fan for beside my bed and will give that a try.

I am on day 8 of 28 for radiation. The only side effect I am having currently is severe diarrhea about 45 minutes after the treatment. I see the radiology oncologist once a week and saw his substitute today. I keep getting told that "it's awfully early in your treatment to be experiencing diarrhea. That' real helpful. Today I thought I was going to go on the table! I had to run directly to the bathroom after my treatment. I was told to avoid: any fibers, fresh fruits and vegetables, and dairy. They told me to try Imodium, yogurt, and a probiotic.

Opinions?

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Chip | @chipe | May 5 5:32pm

In reply to @buffyzoe "How the wearable device work? What about the megace? I have been there, not fun. Cold..." + (show)

@buffyzoe I did not try the menace. Side-effects scared me off. So far no luck with the wave.

Jeff Marchi | @jeffmarc | May 5 8:03pm

In reply to @chipe "@buffyzoe I did not try the menace. Side-effects scared me off. So far no luck with..." + (show)

@chipe
Did you get my instructions for how to configure the wave device?

Chip | @chipe | May 6 6:12am

Yes, and I am following it to a "t". 🙂

guybe | @guybe | May 6 6:56am

In reply to @pamperme "I have been on Orgovyx for 4 months now and just completed my 6th of 38..." + (show)

@pamperme Four years ago I had short-term ADT along with 28 doses of radiation, with my rectum protected by SpaceOar. The only noticeable lingering radiation side-effect was softening, narrowing, and more "demanding" bowel movements. That never entirely went away, but it has been pretty tolerable.

sbassmeister | @sbassmeister | May 7 8:03am

I have been on leuprolide since December, 2024. I take soy isoflavones, (OTC). It doesn't get rid of the hot flashes but it does make them more tolerable. My wife also bought me a neck fan. They are cheap and are a real lifesaver.

bmw1020 | @bmw1020 | May 8 12:20am

In reply to @pamperme "I have been on Orgovyx for 4 months now and just completed my 6th of 38..." + (show)

@pamperme I completed 45 radiation sessions Feb 25. Side effects almost gone. Complete 6 mo of Orgovyx on April 18. Advised side effects would take 1-4 months to disappear. Still having hot flashes and other side effects. Make sure you have your biopsies tested with the new Decipher test. I went from an initial diagnosis of high risk prostate cancer to low risk.
Hang in there. Things will get better.

mrkoji | @mrkoji | May 23 2:54am

In reply to @climateguy ""Gynecomastia represented the principal drawback of tE2, occurring in 85% of patients in that group compared..." + (show)

@climateguy An adequate amount of radiation needs to be used.

jime51 | @jime51 | May 23 6:36am

After 44 IMRT treatments, I had diarrhea daily for eight months until I started taking 2 Tbs. Psyllium fiber and a probiotic daily. 13 months since the completion of radiation, I still have frequent and urgent bowel movements but only occasional diarrhea. Oxybutynin 5 mg twice daily helps a little with reducing severity and frequency of hot flashes and nighttime urination, but for some it's extremely effective. I use a neck fan when exercising or for more severe hot flashes during the day. I complete 18 months of Orgovyx late June.

pamperme | @pamperme | 6 days ago

At my 15th session I started to have diarrhea. The diahrrea has continued and I am now done with 20 sessions of IRMT out of 38. I have no other symptoms I could just attribute to radiation. I am tired and need to urinate more. My six months of adt ends on the same day as the radiation which is June 18. Best wishes to all and wishing all happiness
Timmy

pamperme | @pamperme | 6 days ago

In reply to @bmw1020 "@pamperme I completed 45 radiation sessions Feb 25. Side effects almost gone. Complete 6 mo of..." + (show)

@bmw1020 I am getting radiation for prostate reoccurrence. I had a prostatectomy 3 years ago and they did not do the decipher test at the time of pathology. I had two margins having cancer up to the incision. The prostate was 40 percent cancer and the cancer was Gleason 7 3,4 which had 30 percent Gleason 4 cribform. They did the decipher test at the 2 year mark because my PSA stated to go up and it was .92 putting me up to a higher category. The first 25 sessions of radiation takes in a large field including the lymph nodes and then the last 13 will be the prostate Bed area
Best wishes always
Timmy