Opinion sought for ADT treatment duration

[Doodlebun]

I started taking Orgovyx tablets last April. Then I went through the typical 45 radiation treatments of the prostate. 3 months ago my PSA had dropped from 8 to 0.7. Last week it had dropped to 0.1 ng/ml. A biopsy last year showed 1 sample identified as Gleason 8. My urologist thinks I can stop taking Orgovyx at the end of 2023. My radiologist doctor was thinking 2 years of treatment. I am 76 years old and I'm suffering from low stamina, low hemoglobin, getting out of breath from getting up and down or carrying a 40 lb water bottle a short distance. I'm tired most of the time. I was never this bad before ADT treatment. So I'm thinking of stopping in 9 months and seeing if I can return to some normalcy.

[Derf4223]

It's really hard to provide on-point ideas to someone who has no case details in their HU bio. Do you exercise? The minute you started ADT you should have started to exercise a lot. Its not too late to start if you haven't, but you are now in a metabolic hole that you need to climb out of.

[JohnInTheMiddle in reply to Derf4223]

Derf - your answer was very helpful to me. I'm mHSPC, high-volume, with bone mets to spine etc., thankfully no disabilities, coming up to 2 years and on triplet therapy - a big success so far. Had to learn about exercise on my own. And about metabolic syndrome interactions. And that exercise is not only for quality of life but also for OS. I started on Degarelix ADT of deliberately stayed.Here's why your note was so helpful: the emphasis on starting exercise immediately with ADT. It took me almost a year to figure this out. Idea of a metabolic whole that one has to climb out of is a powerful and centrally important perspective.

I am working to increase the volume, with some intensity, of my exercise. Balancing both aerobic and strength. I am just recently learned that I wasn't consuming enough protein. This kind of knowledge is not systematically available for newly diagnosed PCa people. And it's quite interesting that the main thing that you say in response to the original query is "exercise". Bravo!

[Tall_Allen]

2 years is the Standard of care, but if you understand the risk, it’s your choice to make.

[GP24]

I would take Bicalutamide instead of Orgovyx now. This does not cause the side effects you mention.

[SilverSeppi in reply to GP24]

It's not the same thing

[GP24 in reply to SilverSeppi]

Doodlebun wrote: "So I'm thinking of stopping in 9 months and seeing if I can return to some normalcy. " Taking Bicalutamide is better than stopping all ADT.

[Justfor_ in reply to GP24]

Silly/lazy docs only know/understand ON-OFF control. Drug/dosage proportional adjustment is over their pay grade. The funny thing is that the inverter controlled split AC room unit, hung on the wall of their surgery proves to be "smarter" in this respect.

[Tjc1]

I understand everything you are talking about. When the Xtandi knocked me for a loop I reduced the dose by half and it got tolerable. I did stop ADT for 18 months. Boy those last 6 months were wonderful!But there's risks , like TA mentioned.

Tom

[Grandpa4]

I believe exercise is the key. I cycle, play pickelball, lift weights and go on long walks. I have no fatigue and no weakness on abiraterone and ADT.

[j-o-h-n in reply to Grandpa4]

To Gp4,

You're 71 that's why.......... I painted the inside of my entire 3 story home when I was 79...(in 2015).....I had no fatigue either.... but had lots of drop cloths..

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/18/2023 1:41 PM EST

[Hawk56]

as others have said, exercise may have a major impact on mitigating side effects. Most days I go the gym, do 45 minutes on the indoor bike, lift weights, swim. Weather permitting, there are days I ride my bike outside, usually 25-30 miles unless 'm training for an event then I bump it up to 35-50.

I have read several articles about exercise's role in potentially pushing back progression, my medical team concurs.

On this go around my weight jumped from 191 to 200 despite that exercise though it seems to have stabilized there. I expect if we come off treatment next April I can get it back down.

Kevin

Clinical history

[tunybgur in reply to Hawk56]

I applaud the amount of exercise you manage to do, I have tried to do as much as I can but I was warned off cycling too much (by my GP) for the duration because of the state of our roads and all the potholes.

The continued pounding of the hard saddle into the pelvic floor was not considered good for the prostate during treatment. I doubt there is any research to support this but it does seem something worthy of consideration.

For this reason I have converted to a recumbent exercise bike where the pressure is more on the buttocks.

Likewise, I have stopped using my rowing m/c as it creates continual pressure reversals in this area.

I do a lot of weight training and major on the cross trainer and treadmill for my cardio workout when the weather drives me inside, I also play at least three rounds of golf a week.

Good luck with whatever you do.

[Horse12888]

Studies show that 18 months ADT is not inferior to 36, even in high-risk (G8) patients.

[RugbyVLS in reply to Horse12888]

Any chance you could provide some links to the studies? I’d really like to peruse them. Thanks.

[Horse12888 in reply to RugbyVLS]

I don't have links, but I've seen them numerous times. Perhaps someone will post them.

[Don_1213 in reply to RugbyVLS]

Link to the primary paper: ascopubs.org/doi/abs/10.120...

Additional Links worth reading:

pubmed.ncbi.nlm.nih.gov/350...

healio.com/news/hematology-...

One thing to look at - if it's available - is what age the men the report is on, and if possible what are the results of men your age. I'm 77, other victims can be as young as 50. The expected lifespan of me vs them is obviously different, so the concern about a recurrance 10 years down the road isn't a big concern to me, but it could be to the 50 year old.

[SteveTheJ]

If you're stage 4 and you stop treatment, your cancer will return. Is that what you want?

[Don_1213 in reply to SteveTheJ]

Where did he say he's stage 4? And what's with the attitude..?

[j-o-h-n in reply to Don_1213]

Hey Don,

Re: Tudes from Dudes,

Sometimes you get an unsalted French fried potato in with the salted ones. That's called living on the edge..........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/18/2023 5:51 PM EST

[j-o-h-n]

To the Doodle and his bun,

FYI

So members can get an idea on how you feel about ADT vacation(s). Please just answer YES if you think they’re okay, or NO, if you think they’re not.

Notice: 11/05/2023 THIS SURVEY IS OFFICIALLY OVER. _____________________________________________________________________________________________________ A Thank you to all of the H.U. members who have participated in the survey.

RESULTS:

86 No - VALID responses (55.5%)

69 Yes - VALID responses (44.5%)

155 Total VALID responses

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/05/2023 11:17 PM EST

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/18/2023 5:59 PM EST

[ron_bucher]

Assuming you have a good oncologist who has a lot of experience with prostate cancer, I think that is the person you should discuss the pros/cons with. If you don't have a good oncologist who has lots of experience with prostate cancer, get one.