Intermittent Hormone Therapy (IHT): How is it working for you?

Posted by ava11 @ava11, 1 day ago

I thought it is a good idea to have separate thread on Intermittent Hormone Therapy(IHT), so we can all learn from other's experiences.
Who in here are currently on IHT and if you are, please share about your disease specifics and how it is working out for you as much as you can.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Right now it's working out great, because I'm not on Lupron. I survived 3 years of Lupron, and then I was off it for over a year. During that year I got "younger" and stronger... but then my PSA started rising, so it looks like it may be intermittent Lupron for me for the rest of my life. Unless they can spot where my cancer is and I can get it zapped.

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@bluegill

Right now it's working out great, because I'm not on Lupron. I survived 3 years of Lupron, and then I was off it for over a year. During that year I got "younger" and stronger... but then my PSA started rising, so it looks like it may be intermittent Lupron for me for the rest of my life. Unless they can spot where my cancer is and I can get it zapped.

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What was your psa initially when you got off Lupron? You were not told to get MRI, PSMA/PET scan to see where the PSA coming from?

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I was on Orgovyx for two years post surgery and SRT. While on it, the PSA went down to < .006 and Testosterone went to the single digits.

Now off of it for 6 mos, PSA still < .006 and T is up around 90.

Feel much better already being off the Orgovyx and can already feel the rising T in energy levels, gym, etc.. We'll see where it goes from here. My guess, I'll be back on it sometime down the road....

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@web265

I was on Orgovyx for two years post surgery and SRT. While on it, the PSA went down to < .006 and Testosterone went to the single digits.

Now off of it for 6 mos, PSA still < .006 and T is up around 90.

Feel much better already being off the Orgovyx and can already feel the rising T in energy levels, gym, etc.. We'll see where it goes from here. My guess, I'll be back on it sometime down the road....

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Ah, a fellow pessimist!!😆. But I think you have every reason to be optimistic in your case. That 2 yr period of ADT most likely doused
any sparks of PCa that would have come back.
I know @ava11 has discussed his duration of ADT - as to how long it has to be in his particular case - and I think your post gives him a better idea as to the merits of a longer time frame.
Again, just my opinion since I do not know your Gleason or Decipher scores. Great post.

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I just had a PSMA 2 days ago and am anxiously awaiting the results.

My PSA after 3 years of Lupron went down to .06, but then over a year or so went back up to 2.1, so that's why I got a PSMA.

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@heavyphil

Ah, a fellow pessimist!!😆. But I think you have every reason to be optimistic in your case. That 2 yr period of ADT most likely doused
any sparks of PCa that would have come back.
I know @ava11 has discussed his duration of ADT - as to how long it has to be in his particular case - and I think your post gives him a better idea as to the merits of a longer time frame.
Again, just my opinion since I do not know your Gleason or Decipher scores. Great post.

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Nothing here makes it crystal clear in my case how long I should be on ADT. It is still confusing!

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Yes, ava, it is confusing. Maybe it's like drinking beer. You catch a buzz after 2 beers, but then you don't know whether to start the 3rd one to keep the buzz going...

Or maybe that's not a good comparison. 🙁

I survived 3 years of Lupron, and I think I have a better plan on how to deal with it better if I have to start it again.

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Your PSA after 3 years of Lupron is 0.06. Mine after 8 months on Orgovyx is 0.04. Web265 says after 2 years on Orgovyx and Salvage Radiation is,0.006!
We three have different cancers and different outcomes from the treatment in terms of PSA levels.
I was on Elliptical for 30 minutes followed by 20 minutes on Recumbent bike and I was going to do 10 minutes rower workout, but no energy. Everything at the lowest intensity. That used to be a warmup not long ago. The workout is not pleasurable to put it mildly. Hence my desire to take a holiday from Hormone Therapy.

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@ava11

Nothing here makes it crystal clear in my case how long I should be on ADT. It is still confusing!

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Nothing with this disease is crystal clear - ever! - not even the PET Scans. @web265 had surgery, radiation and 2 yrs ADT - a LOT of treatment to endure; but so far his results look extremely good. He did not specify his PSA or Decipher Score so we can’t know if there can be an apples to apples comparison. ((Perhaps you can send a private message?)
But my point was if your Decipher Score was .98 with a Gleason 9, that is pretty aggressive disease and probably calls for more aggressive measures.
Of course you don’t want to hear that - I wouldn’t! - but what happens if you go off ADT too soon and your disease comes back? Or spreads?
Then you’ll be on it even longer with other meds that will really mess with your body.
I guess you’ll have to finish your consults and take it from there, right? In the end it is your decision alone that matters - just like taking supplemental T. You are informed of the risk/benefit ratio and then you go with it. Best…

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@heavyphil

Nothing with this disease is crystal clear - ever! - not even the PET Scans. @web265 had surgery, radiation and 2 yrs ADT - a LOT of treatment to endure; but so far his results look extremely good. He did not specify his PSA or Decipher Score so we can’t know if there can be an apples to apples comparison. ((Perhaps you can send a private message?)
But my point was if your Decipher Score was .98 with a Gleason 9, that is pretty aggressive disease and probably calls for more aggressive measures.
Of course you don’t want to hear that - I wouldn’t! - but what happens if you go off ADT too soon and your disease comes back? Or spreads?
Then you’ll be on it even longer with other meds that will really mess with your body.
I guess you’ll have to finish your consults and take it from there, right? In the end it is your decision alone that matters - just like taking supplemental T. You are informed of the risk/benefit ratio and then you go with it. Best…

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I want to hear all the opinions and I value them. That is why I am here. I am not going to rush into stopping Hormone Therapy.
Thank You for your input.

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