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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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Profile picture for krs03
krs03 | @krs03 | May 24 12:02pm
In reply to @sbassmeister "I have been on leuprolide since December, 2024. I take soy isoflavones, (OTC). It doesn't get..." + (show)
Profile picture for sbassmeister @sbassmeister

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.

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@sbassmeister Can you recommend a strength, compound, brand and number of doses per day that is effective for you? I find the selection of products daunting.

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sbassmeister | @sbassmeister | 6 days ago

krs03: I take one 150mg capsule of soy isoflavone every morning. It took a week or so before I noticed a reduction in the severity of my hot flashes. My first bottle was from a GNC store but they were very expensive. My last two bottles were purchased on Amazon.com. The current bottle is from a company called Bulk Supplements. The bottle prior to that was from Nutricost. Both were 150 mg which is what my oncologist suggested.

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Jeff Marchi | @jeffmarc | 6 days ago
In reply to @sbassmeister "krs03: I take one 150mg capsule of soy isoflavone every morning. It took a week or..." + (show)
Profile picture for sbassmeister @sbassmeister

krs03: I take one 150mg capsule of soy isoflavone every morning. It took a week or so before I noticed a reduction in the severity of my hot flashes. My first bottle was from a GNC store but they were very expensive. My last two bottles were purchased on Amazon.com. The current bottle is from a company called Bulk Supplements. The bottle prior to that was from Nutricost. Both were 150 mg which is what my oncologist suggested.

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@sbassmeister
Very interesting results. Really glad it’s working for you

They search for information about this shows the following.

Hot Flash Efficacy: While soy isoflavones are often used by women, randomized trials evaluating their impact on men with androgen deprivation therapy (ADT) or low testosterone have shown no significant reduction in hot flashes compared to a placebo.

As we always say results may vary.

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krs03 | @krs03 | 6 days ago
In reply to @sbassmeister "krs03: I take one 150mg capsule of soy isoflavone every morning. It took a week or..." + (show)
Profile picture for sbassmeister @sbassmeister

krs03: I take one 150mg capsule of soy isoflavone every morning. It took a week or so before I noticed a reduction in the severity of my hot flashes. My first bottle was from a GNC store but they were very expensive. My last two bottles were purchased on Amazon.com. The current bottle is from a company called Bulk Supplements. The bottle prior to that was from Nutricost. Both were 150 mg which is what my oncologist suggested.

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@sbassmeister Certainly at 10 cents a day it's worth trying. My ARI + ADT max'd my $2100 Part D yearly maximum in one month!

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Jeff Marchi | @jeffmarc | 2 days ago
In reply to @krs03 "@sbassmeister Certainly at 10 cents a day it's worth trying. My ARI + ADT max'd my..." + (show)
Profile picture for krs03 @krs03

@sbassmeister Certainly at 10 cents a day it's worth trying. My ARI + ADT max'd my $2100 Part D yearly maximum in one month!

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@krs03
Me too. A Nubeqa prescription in January covered the expenses for the year.

I looked into this because I wondered who was actually paying for the drugs after the $2100 Limit is hit,

Turns out it’s the insurance company not the government. If you have Medicare advantage, it’s the advantage plan itself that is paying. I’m sure this new expense starting in 2025 increased the insurance rates for everybody. My Medicare advantage cost went up 40% but they also cut another benefit which really raised it 60%.

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jim18 | @jim18 | 1 day ago
In reply to @jeffmarc "@krs03 Me too. A Nubeqa prescription in January covered the expenses for the year. I looked..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@krs03
Me too. A Nubeqa prescription in January covered the expenses for the year.

I looked into this because I wondered who was actually paying for the drugs after the $2100 Limit is hit,

Turns out it’s the insurance company not the government. If you have Medicare advantage, it’s the advantage plan itself that is paying. I’m sure this new expense starting in 2025 increased the insurance rates for everybody. My Medicare advantage cost went up 40% but they also cut another benefit which really raised it 60%.

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@jeffmarc The CMS regulations have shared pain. Once you hit the limit the drug manufacturers of brand medications have to rebate 20% of the negotiated price to the insurer, at least that is the way it works for stand-alone Part D plans. Most of the pain is with the insurer since the drug companies routinely rebate copays from expensive brand drugs for those with commercial insurance. So Orgovyx 30% and Gemtesa 20% went to zero for me; Mounjaro and Ozempic both have $25 copays. I do not know what the profit is above manufacturing costs for Nubeqa but it has to be over $5K even at the discounted prices (around $10K) that insurers pay. They would lose much more if they refused to participate.

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