Lupron or Not at 76?
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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@pesquallie I know. I couldn't tell you why me and not you. I wish I knew the secret
@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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2 Reactions@formscapeds
Thanks for the info. I'm going to see the oncologist next Tuesday and will bring this up.
@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.
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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3 Reactions@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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1 Reaction@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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1 ReactionI 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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1 Reaction@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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2 Reactions@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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