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.

Profile picture for marexroat @marexroat

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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@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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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
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.

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Profile picture for cath57 @cath57

@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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@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.

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Profile picture for marexroat @marexroat

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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@marexroat Thank you for the hopeful personal history and best of luck with the new approach.

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Profile picture for utahgearhead @utahgearhead

@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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@utahgearhead Exactly. One of the frustrations is hearing alternatives from others working through PC and not from your medical team.

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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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Profile picture for pesquallie @pesquallie

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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@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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Profile picture for tbgb50 @tbgb50

@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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@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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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!

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@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.

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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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