Lupron or Not at 76?

Posted by tbgb50 @tbgb50, Aug 1 10:36am

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).

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Profile picture for pesquallie @pesquallie

@service1010

You are very fortunate. My side effects were really bad for about 15 months until I started TRT.

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@pesquallie I know. I couldn't tell you why me and not you. I wish I knew the secret

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Profile picture for carlsbadguy @carlsbadguy

@tbgb50

First, make sure Orgovyx is in your Part D plan formulary, and check if there are limits (mine only covers it for 12 months). If it is in your Part D formulary, the maximum out of pocket expense for 2026 Part D medications is $2100. This rule applies to every Part D provider, you can read for yourself on Medicare.gov . After that you have no costs whatsoever. My copay was $646 per month, but once I hit $2100 all of my RXs are at no cost through the end of the year. I am Gleason 8 with Crib and IDC and my oncologist is hell bent on 18 months of ADT. If I can't talk him into 12 months I'll need to switch Part D providers this fall during open enrollment for 2027. I think max out of pocket next year will be $2200-$2400, and you can sign up to spread that out into equal payments throughout the year.

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@carlsbadguy You are definitely going to need those 12 months of ADT…so why get worked up now about a longer course of 18 months?
When the time comes you can then decide what you want to do depending on how you feel; remember, the oncologist can only ‘recommend’ - he can’t force the pills down your throat.😉
That’s the great thing about Orgovyx - YOU can stop it at any time if it is really affecting you. With Lupron, that shot will take many months to get out of your system before you get back to normal.
After the one year is up and your numbers look good, that would be the time to negotiate the further duration. A lot can happen in a year and your Doc may then be more amenable to your wishes. No real need to rock the boat now. Best,
Phil

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Profile picture for formscapeds @formscapeds

@tbgb50
I had PC with a GS of 8 with a large tumor, and it had escaped to my lymph nodes and a seminal vesicle. I started out with lupron, zytiga, and 25 days of radiation. I used the lupron and zytiga for 6 months, and now PSA is undetectable and Testosterone levels are 4. Obviously, the therapy was working well but I had real difficulty with the "side effects" .
I then heard about using estradiol patches (check out the PATCH study in Britain) as an alternative, and my PSA is still undetectable and testosterone has only risen to 6. The difference between how I felt on Lupron/Zytiga and Estradiol is incredible. It may be worth talking with your oncologist about though most will discount it before looking at the results.
Good Luck

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@formscapeds
Thanks for the info. I'm going to see the oncologist next Tuesday and will bring this up.

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Profile picture for carlsbadguy @carlsbadguy

@tbgb50

First, make sure Orgovyx is in your Part D plan formulary, and check if there are limits (mine only covers it for 12 months). If it is in your Part D formulary, the maximum out of pocket expense for 2026 Part D medications is $2100. This rule applies to every Part D provider, you can read for yourself on Medicare.gov . After that you have no costs whatsoever. My copay was $646 per month, but once I hit $2100 all of my RXs are at no cost through the end of the year. I am Gleason 8 with Crib and IDC and my oncologist is hell bent on 18 months of ADT. If I can't talk him into 12 months I'll need to switch Part D providers this fall during open enrollment for 2027. I think max out of pocket next year will be $2200-$2400, and you can sign up to spread that out into equal payments throughout the year.

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@carlsbadguy
Thanks, I'll check. I know it's in the formulary but do not know how long it is covered. I'm meeting the the doctor today to see if I can get him to approve Orgovyx.

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I'd press for six months of ADT, using Orgovyx (or Estrogen patch) instead of Lupron. I'm 75 and just came off 18 months of Orgovyx (talked them down from 2 years) and it was an ordeal. Testosterone recovery seems about twice as quick with pill vs. shot. I say six months because yours is localized. Mine was also in adjacent lymph nodes. http://www.pcri.org via YouTube is an excellent resource.

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Profile picture for tbgb50 @tbgb50

@carlsbadguy
Thanks, I'll check. I know it's in the formulary but do not know how long it is covered. I'm meeting the the doctor today to see if I can get him to approve Orgovyx.

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@tbgb50 Biologics by McKesson and Onco 360 are two oncology pharmacies that have access to grants to help make Orgovyx and other meds affordable. My first year of Orgovyx was at no personal cost, covering what insurance didn't.

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Profile picture for heavyphil @heavyphil

@carlsbadguy You are definitely going to need those 12 months of ADT…so why get worked up now about a longer course of 18 months?
When the time comes you can then decide what you want to do depending on how you feel; remember, the oncologist can only ‘recommend’ - he can’t force the pills down your throat.😉
That’s the great thing about Orgovyx - YOU can stop it at any time if it is really affecting you. With Lupron, that shot will take many months to get out of your system before you get back to normal.
After the one year is up and your numbers look good, that would be the time to negotiate the further duration. A lot can happen in a year and your Doc may then be more amenable to your wishes. No real need to rock the boat now. Best,
Phil

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@heavyphil
Thanks for weighing in Phil. My dilemma is not so much that I would like to get off Orgovyx at 12 months instead of 18 (which I do), it's more about my Part D insurance. It only covers Orgovyx for 12 months. Open enrollment is October thru early December at which time I will have only been on the drug for 5-7 months. I doubt my oncologist would agree to a 12 month course at that point, so I will need to once again switch Part D providers during open enrollment to another provider that will cover Orgovyx. Otherwise I would max out my coverage in May of 2027 and be left with 7 months at $2000+ month out of pocket. The Medicare max out of pocket only applies to a drug that is in your plans formulary and only under the conditions of the coverage, which in my current plan is only 12 months. I'm doing pretty well on Orgovyx after a little over 2 months. If my oncologist insists I need to stay on it for 18 months, I trust him and will do so.

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I only used if for a brief time and hated it, and won't go back. For me it's a "quality of life" versus "length of life" thing, but it is an individual choice.
However, there s a new avenue of though on Lupron called "intermittent ADT" that you might want to ask about. They put you on it for a short while TBD....if your numbers go down, you come off until the numbers go up again, then rinse and repeat as necessary. Sounds a whole lot better to me than full-time for several years.

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Profile picture for carlsbadguy @carlsbadguy

@heavyphil
Thanks for weighing in Phil. My dilemma is not so much that I would like to get off Orgovyx at 12 months instead of 18 (which I do), it's more about my Part D insurance. It only covers Orgovyx for 12 months. Open enrollment is October thru early December at which time I will have only been on the drug for 5-7 months. I doubt my oncologist would agree to a 12 month course at that point, so I will need to once again switch Part D providers during open enrollment to another provider that will cover Orgovyx. Otherwise I would max out my coverage in May of 2027 and be left with 7 months at $2000+ month out of pocket. The Medicare max out of pocket only applies to a drug that is in your plans formulary and only under the conditions of the coverage, which in my current plan is only 12 months. I'm doing pretty well on Orgovyx after a little over 2 months. If my oncologist insists I need to stay on it for 18 months, I trust him and will do so.

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@carlsbadguy Yup, insurance messes everything up…it cost me about $700/ mo for I think 3 months, then like very little for the next 3 months.
There are new maximums/donut holes, etc this year.
Also there are subsidies offered thru your hospital if you qualify on a need basis and the drug is heavily discounted. Best of Luck!
Phil

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Profile picture for jime51 @jime51

@tbgb50 Biologics by McKesson and Onco 360 are two oncology pharmacies that have access to grants to help make Orgovyx and other meds affordable. My first year of Orgovyx was at no personal cost, covering what insurance didn't.

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@jime51
Thanks. I'll check these options. My Part D plan covers Orgovyx with a pre-authorization. I need to check for how long - it might be limited to 12 months. Assuming I can get approved for the two years, the total cost would be about $7K because the max on out of pocket resets each January. If this is the best I can do it's not a financial issue.

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