ADT duration after Radiation
During the PCRI conference, talking about the side effect of radiation on the penis, a doctor stated that you should ask your oncologist what is the clear benefits to continue ADT after Radiation because keep taking it can probably lead to a permanent ED. I am kind hesitant if I have to stop taking Orgovyx drug two months after the Radiation because of the side effects that that doctor mentioned.
Any thought about it?
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Seems to me it depends on where and how much cancer there is.
The general recommendations for ADT I've seen depend on your Gleason score, though some doctors now use Prolaris or Decipher tests to determine when ADT is and isn't necessary.
Oncologists don't talk much about sex after prostate cancer so I STRONGLY recommend finding a sexual health doctor. I see one every 3-6 months. The advice he gave me during ADT treatment (which may or may not be applicable to you--just sharing MY experience).
1. Take a daily low dose of a PDE-5 inhibitor (Cialis or Viagra) for 1-2 years after radiation
2. Get at least 3 erections per week for at least 15 minutes whether you have a libido or not. This keeps tissues healthier and helps prevent damage to the penis
I'm now a year past stopping six months of ADT. My testosterone is still low but I have sexual function with Viagra (will probably need to take it for the rest of my life). It's not ideal but it works.
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3 ReactionsBoth radiation and hormone therapy (ADT) can possibly result in ED.
I had 28 sessions of proton radiation (during April-May 2021) + SpaceOAR Vue + 6 months of ADT (Eligard). I did not experience ED. (Zero libido, yes; ED, no.)
My radiation oncologist, medical oncologist, and I discussed possible ADT side-effects, and put together a game plan:
As a result, I chose:
> proton (rather than photon). Due to proton’s Bragg-Peak characteristics (low entry dose, scatter, exit dose), the risk of overshooting the prostate (and hitting something important nearby) is minimized,
> to use a rectal spacer (SpaceOAR Vue). Data show that not only does a rectal spacer protect the rectum from possible radiation damage (proctitis, burns, and other adverse effects), but also protects from late GI and GU toxicities, and provides urinary, bowel, and sexual quality-of-life improvement.
> to implement a consistent full bladder/empty bowel routine to help keep things in the same place for each radiation session.
> to avoid radiating the penile bulb. Data show that late ED may be avoided by minimizing radiation hitting the penile bulb —> https://www.icr.ac.uk/about-us/icr-news/detail/avoiding-penile-bulb-with-radiotherapy-could-save-men-with-prostate-cancer-from-harmful-side-effects
> And finally, despite having no libido while on Eligard, everything still worked. From what I was told by my medical oncologist, the key is to continue “doing it,” despite the “want to” not being there. I was told that it’s a “use it or lose it” scenario.
Another point —> though I had no data to support this (only my MO’s advice that it would work - and I think it did), my experience not having ED while on ADT might also be related to me ramping up my resistance-training and cardio programs to minimize the side-effects of hormone therapy; that might(?) also have the side-benefit of keeping the blood flowing “down there” as well; I don’t know. It’s all about hydraulics so, keeping the blood flowing would seem to be important. (Libido eventually returned to normal when testosterone returned to normal.)
So, some (or all or none???) of those things that I did may have resulted in my not experiencing ED during or after being on Eligard.
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2 ReactionsVery interested in this thread. Did 20 doses of radiation in May and have been on Orgovyx and Xtandi since March. Was told I should stay on those for at least two years due to my Gleason 8 and two bone metastases.
PMSA scan last month shows the metastases have shrunk considerably as has the uptake in the prostate and lymph node that was cancerous. This all based on the STAMPEDE trial. Current PSA is undetectable. Now time to work on the ED.
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1 ReactionI was on Lupron for 2 years post salvage radiation. A lot of good it did. Within a year PSA started rising again. Currently on Orgovyx and Nubeqa. My doc wants me on it for 2 years. Either he will give me the ok for 6-12 months so I can take a drug holiday or I may find another medical oncologist.
Anyone out there who has gone that route?
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1 Reaction@lsk1000 my road took a different turn. I m off ADT- trelstar after 28 months. No rise in PSA after 11 months. My BRCA2 was negative. Was yours? Eat mushroom capsules in my tea daily. Drink green hot tea daily. 77 years old Sunday. FYI only.
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5 ReactionsWell...
The length of time on ADT can vary based on your clinical data, both prior to starting and while on treatment.
The former may range anywhere from 6-36 months.
The latter, may be a function of your response to treatment. If your PSA drops to detects or within the first 3-6 months clinical trials such as EMBARK have taken participants off treatment early and actively monitored them.
As to the ED, yeah, one of the side effects of ADT and possibly radiation depending on where and with what machine.
I've done ADT twice 18 on Lupron, 12on Orgovyx. Had the usual side effects, hot flashes, fatigue, muscle and joint stiffness, genitalia shrinkage...
I did not experience loss of libido nor depression.
Both times I was able to achieve erections and orgasm. Granted, required daily Cialis, greater visual and physical stimulation, orgasms most times took longer to achieve and of course because of surgery, dry.
Why, who knows. As others have said mitigating strategies may be in play.
Diet
Exercise
Managing Stress
and the X factor, attitude?
As I've posted before, a basic understanding of statistics is useful, Bell Curve, Standard Deviations, Mean, Mode, Median, Average...
Most men on ADT likely fall in the middle of the Bell Curve regarding side effects. Others will be to the right, more severe, others to the left, less...
I don't have any science to say but maybe those to the left are in part a function of the mitigating strategies...!?
There are some studies that say depending on one's clinical data, MDT by itself may push back the need for systemic therapy.
Generally my understanding as a layman and fellow member of this damn club is that combining ADT with radiation is done because:
Micro-metastatic disease too small to be seen by even today's sensitive imaging.
ADT works synergistically with radiation by preventing DNA repair and has an independent cytotoxic effect, but it is not known to independently cause an abscopal effect.
Combination with radiation: Combining ADT with radiation therapy is standard practice and improves survival and reduces failure rates in prostate cancer patients. This combination makes cancer cells more susceptible to the direct effects of radiation.
There is data that points to outcomes such as longer PFS, RPFS when combining therapies in part depending on which agents and whether ARIs are part of the combined therapy with ADT such as Lupron, Orgovyx..
Speaking of Orgovyx, while you experience generally the same side effects, I mean no T is exactly that no matter how you get there! Once you stop, T recovery may be faster. It may have financial toxicity issues depending on your insurance and you must be disciplined to take it every day, same time... no heading out on vacation and forgetting your meds...!
Kevin
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4 Reactions@ecurb , yes I concur with ecurb about the white button mushrooms. There have been clinical trials with great results.
Here's a link for the American Medical Journal with some results. I have more links if people would like to read more about this.
https://www.emjreviews.com/en-us/amj/oncology/news/white-button-mushrooms-found-to-halt-cancer-progression/
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2 Reactions@ecurb I was on ADT for one year. I've been off of it for four years now. With daily doses of Turkey Tail and Lion's Mane mushroom tea, my PSA is 0.07. Gleason score was 8 and PSA 54.0 at diagnosis. What kind of mushroom capsules are you taking?
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1 Reaction@bonanzaman OMG. This is potentially really helpful news. I've been on a white button capsule per day for the last month or so. Loved that link! I posted a pic of what I'm taking. If anyone has a better option, please share.
Thanks!
Doug
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