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Continued hormone therapy? or not?

Posted by ronjc @ronjc, 5 days ago

I had a radical prostectomy in March of this year, after a PET, a small amount of cancer was detected in the same area, Gleason was 7 (3+4), the doc recommended radiation which I did in July. I had a Eligard shot with a duration of 6 months in June. Numbers have been less than 1 since. My radio-oncologist suggests no more Eligard, my urologist thinks otherwise, who should I believe?

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jeff Marchi | @jeffmarc | 1 day ago
In reply to @dsingstock "I have been on hormone therapy for 4 years. Psa was up to 40 when I..." + (show)
Profile picture for dsingstock @dsingstock

I have been on hormone therapy for 4 years. Psa was up to 40 when I started. Doc put me.on Eligard 6 month injections and 160mgs of Xtandi. In 2 months my psa was down to and remains at >0.1. Side effects hit hard. Hot flashes still remain. Took Gabapentin for hot flashes and ended up with neuropathy. Also voiding issues from radiation issues from my first bout with PC 12 years ago. PC returned 4 years ago as stage 4 non-currable and metastisized in my rib cage. My psa still remains at < 0.1. The Dr stopped my Eligard aftet 1 shot and the Xtandi dose 6 months ago from 160mgs to 80mgs because of the low psa and testosterone. Still have significant hot flashes, urination issues and other side effects. Any suggestions on getting rid of hot flashes and neuropathy. Thanks. Dave

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@dsingstock

I’ve been taking 600 mg of gabapentin three times a day for a few years. It never helped with my hot flashes. I take it for joint pain from osteoarthritis.

I had really serious hot flashes from ADT. You need to get your testosterone checked every time you get your PSA checked that will show when your hot flashes should stop happening, Usually around When your testosterone gets close to 200. When I had really serious hot flashes, my oncologist recommended I get depo-provera Shots every three months. They made a major difference and reduce my hot flushes to almost nothing.

I have an embrlabs.com wave product (wave 2). I’ve used it for Over five years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.

They cost $300 but they have a special deal for $100 off if you use the code BFCM25. They have a 60 day moneyback guarantee. If you do get one post a message on this forum and I can send you the instructions for setting it up ideally. I paid a test of the product five years ago and worked with the company regularly to debug problems that come up.
https://embrlabs.com/
You might ask your doctor to put you on Nubeqa instead of Xtandi. It has a lot fewer side effects and doesn’t pass the blood brain barrier which causes brain fog with drugs like Xtandi. That’s Darolutamide versus Enzalutamide, Two very similar drugs in how they work. I’ve been on Nubeqa For almost 3 years and I’ve been undetectable for the last 25 months after four reoccurrences and 16 years of PC. I noticed absolutely no side effects from that drug.

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Profile picture for bonanzaman
bonanzaman | @bonanzaman | 16 hours ago
In reply to @dsingstock "I have been on hormone therapy for 4 years. Psa was up to 40 when I..." + (show)
Profile picture for dsingstock @dsingstock

I have been on hormone therapy for 4 years. Psa was up to 40 when I started. Doc put me.on Eligard 6 month injections and 160mgs of Xtandi. In 2 months my psa was down to and remains at >0.1. Side effects hit hard. Hot flashes still remain. Took Gabapentin for hot flashes and ended up with neuropathy. Also voiding issues from radiation issues from my first bout with PC 12 years ago. PC returned 4 years ago as stage 4 non-currable and metastisized in my rib cage. My psa still remains at < 0.1. The Dr stopped my Eligard aftet 1 shot and the Xtandi dose 6 months ago from 160mgs to 80mgs because of the low psa and testosterone. Still have significant hot flashes, urination issues and other side effects. Any suggestions on getting rid of hot flashes and neuropathy. Thanks. Dave

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@dsingstock my neuropathy got better by taking vitamin B complex and Taurine. Taurine also has some good effects on PC.
Good luck 👍

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