Lupron or Not at 76?

Posted by tbgb50 @tbgb50, 4 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.

Profile picture for tbgb50 @tbgb50

@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.

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@tbgb50
This year Medicare has a maximum for what you will pay for drugs. It is $2100. I hit that in January this year when I ordered Darolutamide. From then, on all my drugs were free for the rest of the year.

I read that for 2027. It will be $2400 but I have not seen that confirmed in other articles.

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Profile picture for Jeff Marchi @jeffmarc

@tbgb50
This year Medicare has a maximum for what you will pay for drugs. It is $2100. I hit that in January this year when I ordered Darolutamide. From then, on all my drugs were free for the rest of the year.

I read that for 2027. It will be $2400 but I have not seen that confirmed in other articles.

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@jeffmarc
This is literally the $64K question. I only take one generic blood pressure medication (never met the deductible) so I never really learned much about how Part D works. My understanding (definitely could be wrong) is that the medication must be in the formulary for your plan, so it's on my todo list for today. I'd pay $2400 in a heartbeat.

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Profile picture for utahgearhead @utahgearhead

I’m 76 been on Lupron for 3 months. I have adapted pretty well to the typical side effects night sweats, achy joints hot flashes no energy short term memory loss. I am worried about bone loss & muscles.

I’m glad I got a second opinion as I was to stay on Lupron 18 months along with radiation.

My second opinion doc, suggested 6 months and 5 SBRT doses. This was after meeting with him once & another body scan etc. which showed all contained in the prostate.

The first docs thought it had moved to the ribs & this was a concern but I broke three ribs 10 years ago but I wasn’t aware they glow and can be a false positive in tests, which is what we’ve finally determined.

I do wish my first team gave me the pill option as I didn’t find out about it til after getting the 6 month Lupron shot.

All that said, i am so glad only 6 months. We will see outcome later but i have a whole new appreciation for the horrible side effects men on ADT deal with because its the question is the cure worse than the disease?
Quality of life is me now. Quantity of life, I’ve adjusted my want.

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@utahgearhead
Thanks for sharing. Being a widower, I have too much time alone to obsess over everything and no sounding board when I get in a loop.

I think this is exactly how I feel:

"We will see outcome later but i have a whole new appreciation for the horrible side effects men on ADT deal with because its the question is the cure worse than the disease?
Quality of life is me now. Quantity of life, I’ve adjusted my want."

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Profile picture for michaelcharles @michaelcharles

A bit to unpackage.
In 2022, I had RP at 72, followed by salvage radiation treatment(SRT) w/ short term ADT at 73.
G 9 w/ EPE after surgical path and PSA persistent at 3 mos post-op at .19
Cost: Orgovyx was my ADT. Covered on my Part D at 25% coinsurance. If you are on Medicare Part D, your annual out of pocket should be limited to about $ 2000 per yr
ADT: My short term for G 9 was not consistent with any guidelines at the time, and it appears from reading that length of ADT is variable with different ROs and MOs.
I would consider a 2d opinion from a COE. I was treated at Johns Hopkins.
Results (so far): Undetectable quarterly PSAs at < .02 close to 3 yrs now.
Prognosis: PCa returning at some time; hopefully not for a while; wishfully never. Now 76.
Best wishes for successful treatment.

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@michaelcharles
Thanks, this is helpful. My sister manages the office for a team of oncologists so I got a long distance second opinion (she's in NY, I'm in AZ). from two of them. So far their advice has been consistent but no one, including my medical team even mentioned Orgovyx.

To be fair, I have not had the last appointment with the urologist before the treatment begins but am skeptical because I was told he will administer the shots i.e. a possible financial incentive to make a specific recommendation. If he doesn't mention any of the alternatives I learned on this forum, I'm probably going to get a formal second opinion from Mayo Clinic which is close by.

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My understanding is that ADT injectables such as Lupron are covered under Medicare Part B and therefore require less patient involvement with prescription costs under Part D and coinsurance or copay issues. Also, patient compliance is "guaranteed".
I have no reason to think that it is a revenue issue.

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Profile picture for tbgb50 @tbgb50

@utahgearhead
Thanks for sharing. Being a widower, I have too much time alone to obsess over everything and no sounding board when I get in a loop.

I think this is exactly how I feel:

"We will see outcome later but i have a whole new appreciation for the horrible side effects men on ADT deal with because its the question is the cure worse than the disease?
Quality of life is me now. Quantity of life, I’ve adjusted my want."

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@tbgb50 I’m not a widower, sorry for your loss, but I’m also dealing with a loss/betrayal. You may smile, I do too now.

A woman showed up on my doorstep 4 years ago after 20 years silence. Within 2 months she moved in, deeply in love with me and I fell in love again. Nursed her through a hysterectomy and stuff. Lived with me for 3 years. Last August 2025 I had a routine TURP scheduled (to help peeing) which went well.

While I was literally in the surgery theater, she spent the time packing up & moving out but waited til I got home so she could witness my reaction. I was too drugged up to care so. She left without explaining & never contacted me since. The next week I got the news I have PC. That sent me into a terrible depression & tailspin that a year later I’m surprised I feel as good as I do going into SBRT next week.
And now that I know who she is I shake my head and smile sometimes. Still can’t believe how she left. 😊

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Profile picture for michaelcharles @michaelcharles

My understanding is that ADT injectables such as Lupron are covered under Medicare Part B and therefore require less patient involvement with prescription costs under Part D and coinsurance or copay issues. Also, patient compliance is "guaranteed".
I have no reason to think that it is a revenue issue.

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@michaelcharles now I know all of that and I understand why the injection is covered. I just wish someone would have verbally said that to me about choice. And I know the daily pill can be missed by human error.

A lot couldn’t afford the additional costs, me too probably. I learned all this after I had the injection. I had the injection because at the time with all the test results I was just going along with my first care team suggested. I am elated I got the second opinion because I wasn’t going to but at last minute I did.

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Profile picture for tbgb50 @tbgb50

@kujhawk1978 Many thanks for the detailed reply. As everyone knows this is nerve racking and I am a bit overwhelmed with uncertainties when making treatment decisions, not the least of which is making sure the doctors are giving you all you need to know.

The replies have given me at least 4-5 things no doctor has mentioned yet. For example, the oncologist only mentioned Lupron. My appointment with the urologist to discuss ADT is in couple of weeks so I'll see.

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@tbgb50

There are no certainties in making treatment decisions...

Generally, there are good choices, occasionally I see on the forums people who may not make a good choice, aka, deciding to die of prostate cancer than "endure" the treatment. I've peaked behind that door, no thanx!

As I've said, a lot of variables go into the treatment decision. Financial toxicity as a result of insurance such as you mention about Orgovyx.

Of the treatment choices you mentioned, there is nothing "wrong" with any of them.

Still, I think the forum's consensus would be radiation only may not be a top choice.

Just because your initial treatment plan says X months of systemic therapy, doesn't mean you have to follow that to the end. In both cases I've done systemic therapy we've de-intensified early based on my responses.

Sometimes, you look at the data and it may say the difference in PFS is seven months or so. That may lead you to ask, "is 12 more months on treatment worth the seven months...!? My answer, no.

It would be nice to have a black and white checklist to go down and decide, "if this, then that...!"

There isn't!

But, wealth of experience on this forum so you can always bounce your ideas off the members!

Kevin

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I have had prostate cancer since 2009. I have been on lupron since 2011. It has kept my PSA level below one. I am now 73 years old in my PSA is now at 1.8. Just last week, my doctor put me on Abirateone acetate to reduce my PSA level. So Lupe has been working for me all the way up until now and I have not complained once.
good luck.

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Profile picture for tbgb50 @tbgb50

@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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@tbgb50 don't miss the surgery too much. It is not a walk in the sunshine. Both options work very well! They have both their own pros and cons. Take it easy, at least you don't have to make a decision. It's a difficult one.

I am sorry to hear that your wife has passed away. Good that you have found this site, you get excellent information here and some company.

My husband is 5 months post surgery and 8 months post diagnosis. Thanks for asking, he is much better now. Does what every man does on this site: try to stay positive and try to be brave. You will be much better in 8 months time as well!

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