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 utahgearhead @utahgearhead

@pesquallie
Thanks for your words. One mistake is my Gleason is 3+4 I switched it around.

I’m hoping I start feeling the Lupron leave my system in 3 months but I’m aware it probably be longer. And we will see about an erection.

Wish you the best

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@utahgearhead You will be lucky to recover in 9 months on a 6 month shot. Wish you the best. Impact exercises can reduce bone loss along with calcium. Also resistance training to reduce muscle loss. Have to push through the fatigue.

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Profile picture for tbgb50 @tbgb50

@chippydoo Orgovyx is my plan, assuming I can convince the urologist. I agree quality of life is an important issue. My argument is going to be just what you said - the half life takes me to 80 YO and the radiation oncologist said you likely won't get over all of the side effects at that age but which ones no one knows. My brother's neighbor is a year younger than me but better PSA and Gleason scores - he just quit Lupron after 6 months even though the recommendation was 12 months. Couldn't take it.

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@tbgb50 Be firm- tell the urologist that you do NOT want Lupron; blame the cardiologist if you have to - this shows the RO that someone else is clued in to your treatment.
The only thing that should prevent you from getting Orgovyx at this point in time is your insurance company not wanting to pay for it – or you not being able to pay for it if they don’t. But remember, there are a lot of financial assistance programs at big centers for people who can’t afford cancer meds.
Phil

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1. I was 85 when I took 2 shots of Lupron.
2. I stopped any more shots.
3. I had not realized that lack of testosterone would affect my walking ability.
4. It's four years later, and I have still NOT regained my previous mobility.
Best wishes to you.

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Profile picture for utahgearhead @utahgearhead

I’m 76, Gleason 4+3 along with initially suspected seminal vesicles & rib involvement Docs suggested 18-24 months Lupron and several radiation doses.

I decided to get a second opinion right after getting the first 6 month Lupron injection. The second RO after looking at my chart immediately suggested only 6 months Lupron and 5 SBRT sessions. I had the first session today.

My two cents on Lupron is much like a lot others. I’m into it 3+ months. The night sweats, achy joints, no sex drive and even the brain fog, I can deal with. It’s the potential bone loss, lack of energy and loss of strength and mood. It’s the first time in my life I actually feel old.

After 3 months I’ll have a PSA and see my RO.

I have no want, nor at this point in my mind will go on Lupron again. Combined with the aging and time left, quality of life it’s all there to choose. But I can’t imagine my physical & mental body after 18 -24 months.

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@utahgearhead Thanks for sharing. I have a second opinion from the doctors where my sister is the office director. They agreed with the radiation treatment and specifically did not recommend SBRT for me. Really eye-opening is that their standard treatment is Orgovyx. They do use Lupron but only in cases where it is needed. Too bad they are 2500 miles away.

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Profile picture for pesquallie @pesquallie

Lupron can be really rough on the body. At age 82 I had about the same cancer diagnosis as you but opted for 44 radiation sessions and 18 months of Lupron. The Lupron side effects were so bad that I thought they would kill me, so I stopped at 4 months, but the effects lasted another year. I immediately became hypogonadal due to the Lupron and 3 weeks ago started TRT to get above my 111-testosterone level. Within 5 days I got some libido back and soft erections plus felt so much better. A number of recent studies now agree that TRT does not raise the risk of cancer return. It seems that testosterone is not the big driver of prostate cancer as they used to believe.

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@pesquallie Thanks for the information about your experience. These are exactly my concerns. There are just so many uncertainties making treatment decisions is difficult and doctors pretty much leave it up to you.

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Profile picture for heavyphil @heavyphil

@tbgb50 Be firm- tell the urologist that you do NOT want Lupron; blame the cardiologist if you have to - this shows the RO that someone else is clued in to your treatment.
The only thing that should prevent you from getting Orgovyx at this point in time is your insurance company not wanting to pay for it – or you not being able to pay for it if they don’t. But remember, there are a lot of financial assistance programs at big centers for people who can’t afford cancer meds.
Phil

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@heavyphil Excellent advice. As I sit here typing, I'm pissed neither the urologist no RO even mentioned Orgovyx. I found out about it here. Adding to my frustration is the the RO and urologists where my sister works only use Orgovyx unless there are complications that call for Lupron.

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Profile picture for tbgb50 @tbgb50

@utahgearhead Thanks for sharing. I have a second opinion from the doctors where my sister is the office director. They agreed with the radiation treatment and specifically did not recommend SBRT for me. Really eye-opening is that their standard treatment is Orgovyx. They do use Lupron but only in cases where it is needed. Too bad they are 2500 miles away.

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@tbgb50 interesting as at the time I got the Lupron injection, I was an emotional & mental mess. I went along getting the injection. Of course afterward I thought about the pill and even raised whether my RO gave me that option. Claims to have informed me. And evidently is very costly and prone to human error of daily taking. I would have entertained it. But at the time with the test results etc. I went along with their direction.

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Profile picture for utahgearhead @utahgearhead

@tbgb50 interesting as at the time I got the Lupron injection, I was an emotional & mental mess. I went along getting the injection. Of course afterward I thought about the pill and even raised whether my RO gave me that option. Claims to have informed me. And evidently is very costly and prone to human error of daily taking. I would have entertained it. But at the time with the test results etc. I went along with their direction.

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@utahgearhead Costly, yes but covered by most insurance. Prone to patients quitting but not error since you can miss up to 7 days before having to retake the starting 3 pills again. Has 36-hour half-life so missing a day or 2 will not increase testosterone.

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Profile picture for pesquallie @pesquallie

Lupron can be really rough on the body. At age 82 I had about the same cancer diagnosis as you but opted for 44 radiation sessions and 18 months of Lupron. The Lupron side effects were so bad that I thought they would kill me, so I stopped at 4 months, but the effects lasted another year. I immediately became hypogonadal due to the Lupron and 3 weeks ago started TRT to get above my 111-testosterone level. Within 5 days I got some libido back and soft erections plus felt so much better. A number of recent studies now agree that TRT does not raise the risk of cancer return. It seems that testosterone is not the big driver of prostate cancer as they used to believe.

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@pesquallie i was Gleason 4+3; 28 sessions Radiation... Eligard 2 weeks before radiation. now every 3 mis. same issues heat flash/sweats (14-18/ day & night) brutal at night as wreck my sleep... fatigue,etc. VA Urologist wants 2 yrs, ADT ... Radiation Oncologist Ironwood Cancer Center says 6 mos maybe 9 No more than that. Psa 0.01 3 mos after last radiation treatment. Will go with Radiologist/Oncologist

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Profile picture for jimbo12 @jimbo12

1. I was 85 when I took 2 shots of Lupron.
2. I stopped any more shots.
3. I had not realized that lack of testosterone would affect my walking ability.
4. It's four years later, and I have still NOT regained my previous mobility.
Best wishes to you.

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@jimbo12 yes my walking has also been impacted now have sciatica ...

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