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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@marexroat
I had a Similar thing happen. Failed Lupron, PSA started rising, hello castrate resistance. I went on Casodex for 15 months But my PSA kept rising, went on Zytiga And it rose even more for the first nine months and then started going down, PSA was only undetectable one month in 2 1/2 years. Then I switched over to Orgovyx and Nubeqa And I’ve stayed undetectable for 33 months.
The side effects of Zytiga were not good. Gave me high blood pressure, Five afib Events and lots of hot flashes.
Watch Out for Zytiga. If it doesn’t work well for you switch over to one of the Major lutamides. I know people that have been on it many years With success, Others that like me had real problems with it. It can cause serious fatigue for some people.
Well, just some things to think about.
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1 Reaction@michaelcharles
My Medicare advantage started charging me $400 for my 6 Month Lupron shot. Orgovyx was free After buying Darolutamide In January. Hit the $2100 maximum and didn’t pay for any more drugs for the rest of the year. Only thing you have to pay for is Cosmetic stuff.
Part B isn’t always free. It was for the first five years.
@cath57 Thanks for the condolences. The journey starts today - the mapping for the radiation is scheduled and treatments should start at the end of the month. Can't wait to tick off each day.
I'm not one to jump into online forums but the people who participate on this site are exceptional.
@marexroat Thank you for the hopeful personal history and best of luck with the new approach.
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1 Reaction@utahgearhead Exactly. One of the frustrations is hearing alternatives from others working through PC and not from your medical team.
I had 44 radiation treatments and 4 months of Lupron at age 83. Th e Lupron almost killed me and think it would have if I had not stopped at 4 months. The pain in my muscles, head, and bones was awful 24 hours per day. The sweats were bad also but not life threatening. My recovered testosterone was 111 and falling. It has been a year since my treatments, and I am now on testosterone replacement therapy which has stopped the serious side effects. After 2 weeks on testosterone, I am seeing some libido recovery. I have also read new research articles that state that low testosterone has no benefit and can harm the cardiovascular, muscle, and bone systems.
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2 Reactions@pesquallie Thanks for telling me about your experience.
These are the concerns that prompted me to ask my question in the first place. I'm seeing the oncologist today for the radiation mapping and am going to ask about Orgovyx as many in this discussion have recommended. Either way, I'm going to take it 6 months at a time - the recommendation is 2 years of Lupron. If I'm able to live normally even with unpleasant side effects, I ll extend another 6 months. If it is a disaster, I may just stop.
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1 Reaction@tbgb50
Start with something less than 6 months because ADT can chemically castrate you for a very long time even with just one dose. If you are older the castration can be permanent with even one shot of Lupron. It took 10 months after a three-month shot before my side effects even started to diminish and my PSA stayed less than 0.03.
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1 Reaction@cath57
ADT is chemical castration which destroys the testicles' ability to produce testosterone. Very recent studies at Duke, Baylor, and John Hopkins now indicate that testosterone does not cause or make cancer more likely. If these studies are valid, it then brings into question whether ADT should be used since low testosterone causes serious side effects to the heart, bones, and muscles plus uncontrollable sweating and brain fog. My urologist has put me on TRT (testosterone replacement therapy) because of these concerns and my 111 level testosterone after ADT treatment recovery. Six months earlier my urologist refused to do TRT because of earlier studies. The recent studies have changed his mind.
Someone on this forum offered the ADT comment: "For every 10 men who take ADT, one is helped." I'm sure that's 'folk wisdom,' but folks do have a sense of reality often. I'm 80 and 4+3, still looking at options but see RP and ADT as the last 2 on the list of possibilities for me!
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