Lupron or Not at 76?

Posted by tbgb50 @tbgb50, 3 days ago

Background - biopsy in 2022 was completely clean. Biopsy in 2026, Gleason 9. PET shows cancer is localized.

Had first appointment with oncologist yesterday. Recommended 5 weeks of Photon radiation treatments and 2 years of Lupron. I'm fine with the radiation but:

I was told the success rate is 80% for the radiation and another 5% with the Lupron. One problem is the 80% success rate is not based on age groups so it's difficult to decide if the Lupron is worth it because:

I was told at 76 the 'recovery period' for Lupron = the amount of time you get the treatment. So 2 years of treatment + 2 years of recovery = 4 years. I'd be 80 and I was told at this age you often don't see the side effects of Lupron reverse so it seems high risk for not much reward.

Am I thinking about this correctly?

Has anyone roughly my age gone with Lupron and really regretted it? Why

THANKS!

FWIW at this point I need to decided between:

Radiation only
Radiation + 1 year of Lupron (my idea)
Radiation + 2 years of Lupron (recommendation from urologist and oncologist).

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

I am 78 and have been on Lupron for six years, followed by Orgovyx For three years. I live a normal life, Have to exercise because of what it does to the muscles. I’ve taken bone strengtheners for the last eight years. Nobody would have any idea I have prostate cancer, even though I’ve had it for six years and had four reoccurrences in the 16 years I have had prostate cancer.

I was running a mile twice a day until my orthopedist told me he would have to replace my hip again sooner so now I only walk as fast as I can twice a day. Go to the gym three times a week or do Equivalent weight exercises at home.

ADT has some real beneficial effects when it comes to killing your prostate cancer cells after radiation. You are a Gleason nine, Very high chance of reoccurrence, It really doesn’t make sense not to take ADT. I was only a 4+3.

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I would say no to Lupron. Can you get Orgovyx where you are at? It has a much better recovery profile and most who have taken both report fewer side effects on Orgovyx. I also agree with the 12 months. The largest benefits from ADT are in the first 6 months, and it has decreasing benefit with each added month. If the doctors want you to do more have them add a ARSI lutamide (Nubeqa, Erleada, Xtandi) to the mix for those 12 months. It will not add much to the side effects from Orgovyx. ED from radiation is highly correlated with ADT and the length of ADT. You should take rehabilitation steps at the start of ADT (same as with RP surgery) to minimize the chance. Will also need to do resistance and impact exercises to minimize muscle and bone loss. All of these are worse with 2 vs 1 year. When ADT is decreased to 1 year per studies your chances of dying from prostate cancer will increase while your overall chances of dying decrease (both the increase and decrease are minor) due to eliminating the negative side effects of no testosterone.

If your cancer metastases than you will need to be on ADT and ARSIs for the rest of your life.

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Cancer can be tricky. In 2015 a biopsy showed I had cancer when my PSA was 3.70; normal it would have been 4.00.
Gleason 9 is a high number, but I believe biopsies are accurate. I don't know what to tell you.
Lupron has terrible side effects, I was on it for 6 years.
But, every person and case is different; chances are you feel okay with.
I am wondering what explanation the oncologists are giving you. This is an extrange case. Follow the advice of your medical team, is the only thing I can suggest.
Good luck

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I should have said that you should try to get Orgovyx Instead of Lupron. It’s better for your heart and many people have fewer side effects with it.

If they insist on Lupron, you should make sure that you get Casodex for two weeks before the first Lupon shot. If they don’t do that or give you something equivalent, and there is a real question about How knowledgeable the medical team is.

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Regarding your biopsy in 2022, was that an MRI-guided biopsy?

My oldest brother is 1 year into his 2 years of Eligard. He should expect 50% more time (= +1 year) of recovery = 3 years total. True, the older the age, the higher the risk of testosterone not recovering.

Your Gleason 9 (is that a 5+4 or a 4+5?) is very high risk disease, with a high risk of metastasis. You mention “… another 5% with the Lupron” - however with very high-risk disease, I would not want to under-treat it. (I would get an ArteraAI prostate test to see if ADT would be beneficial.)

In your MRI and biopsy reports, is there any mention of cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? (If not, that’s good.)

If it was a Gleason 8 (high risk disease), I might go with just 1 year of Lupron; but with very high risk disease (Gleason 9), I’d go with 2 years.

Ultimately, it’s your call; you’re the one that has to live with the outcome, one way or the other.

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If possible, nix the Lupron and demand Orgovyx. Just as effective, less side effects and easier to take (daily pill), no need to travel for the shots, can be stopped at anytime, no testosterone flare, quicker testosterone recovery after stopped, In my opinion a no brainer decision.

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My husband had a Gleason 4+5 biopsy as well. We learned from the Radio Oncologist that the radiation kills the cancer cells effectively but not immediately. They die in slow motion and it takes roughly one year until the dying process and the radiation's effect stop. For a "standard" PCa cell this is fast enough since PC grows slowly. However, very aggressive cancer cells are highly active and more robust. They could be still able to proliferate so that the cancer is not suffocated enough or may even sneak out of the radiation area. Hence, ADT kind of paralyzes or freezes the cells in order to suppress their activity during the radiation's effective time. This is the reason why radiation alone is not suited aggainst aggressive cancer as in your case. We had not understood why they recommend ADT for so much longer than this one year post radiation, apart from a more is more strategy (which is not always a good one). However, since my husband decided for surgery, we did not follow up on this topic any more.

Ask your RO about this and whether one year wouldn't be a good compromise in your case, or maybe even a bit shorter. It seems that the effect of ADT doesn’t end abruptely when you stop it. All the best to you!

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Profile picture for Jeff Marchi @jeffmarc

I am 78 and have been on Lupron for six years, followed by Orgovyx For three years. I live a normal life, Have to exercise because of what it does to the muscles. I’ve taken bone strengtheners for the last eight years. Nobody would have any idea I have prostate cancer, even though I’ve had it for six years and had four reoccurrences in the 16 years I have had prostate cancer.

I was running a mile twice a day until my orthopedist told me he would have to replace my hip again sooner so now I only walk as fast as I can twice a day. Go to the gym three times a week or do Equivalent weight exercises at home.

ADT has some real beneficial effects when it comes to killing your prostate cancer cells after radiation. You are a Gleason nine, Very high chance of reoccurrence, It really doesn’t make sense not to take ADT. I was only a 4+3.

Jump to this post

Thanks for sharing your experience. This is encouraging.

REPLY
Profile picture for jim18 @jim18

I would say no to Lupron. Can you get Orgovyx where you are at? It has a much better recovery profile and most who have taken both report fewer side effects on Orgovyx. I also agree with the 12 months. The largest benefits from ADT are in the first 6 months, and it has decreasing benefit with each added month. If the doctors want you to do more have them add a ARSI lutamide (Nubeqa, Erleada, Xtandi) to the mix for those 12 months. It will not add much to the side effects from Orgovyx. ED from radiation is highly correlated with ADT and the length of ADT. You should take rehabilitation steps at the start of ADT (same as with RP surgery) to minimize the chance. Will also need to do resistance and impact exercises to minimize muscle and bone loss. All of these are worse with 2 vs 1 year. When ADT is decreased to 1 year per studies your chances of dying from prostate cancer will increase while your overall chances of dying decrease (both the increase and decrease are minor) due to eliminating the negative side effects of no testosterone.

If your cancer metastases than you will need to be on ADT and ARSIs for the rest of your life.

Jump to this post

@jim18
I've looked into Orgovyx and am going to ask the urologist about it. Cost is an issue - I really don't know how preauthorizations work on my Part D plan but a year would cost $34,000 with no insurance which is doable. I'm more concerned about the quality of life than the length - I'd rather die from something else.

Thanks for the advice about exercise...this might be my biggest challenge.

REPLY
Profile picture for cath57 @cath57

My husband had a Gleason 4+5 biopsy as well. We learned from the Radio Oncologist that the radiation kills the cancer cells effectively but not immediately. They die in slow motion and it takes roughly one year until the dying process and the radiation's effect stop. For a "standard" PCa cell this is fast enough since PC grows slowly. However, very aggressive cancer cells are highly active and more robust. They could be still able to proliferate so that the cancer is not suffocated enough or may even sneak out of the radiation area. Hence, ADT kind of paralyzes or freezes the cells in order to suppress their activity during the radiation's effective time. This is the reason why radiation alone is not suited aggainst aggressive cancer as in your case. We had not understood why they recommend ADT for so much longer than this one year post radiation, apart from a more is more strategy (which is not always a good one). However, since my husband decided for surgery, we did not follow up on this topic any more.

Ask your RO about this and whether one year wouldn't be a good compromise in your case, or maybe even a bit shorter. It seems that the effect of ADT doesn’t end abruptely when you stop it. All the best to you!

Jump to this post

@cath57
Thanks very much - your explanation is excellent. The RO did agree the 1 year of ADT was the minimum he'd recommend but left the ball in my court.

I hope your husband is doing well. I wish I had the surgical option.

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