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Lupron injections, how long? Who should administer & follow?

Posted by kakalena @kakalena, May 20 9:51am

My husband, 78 years old, was diagnosed with prostate cancer 6 years ago, multiple scattered spots in both sides He has been getting Lupron injections every 6 months until this past January. Now the doctor is going to wait 12 months for a PSA test and decide if he needs to continue. His PSA has been under .10 for most of this time. Started at 50 PSA. His muscle tone has greatly deteriorated. He can barely walk. Part of this he says is back pain. The muscle weakness seems to have gotten worse since he skipped his last Lupron in January. Is this a possible side effect? He has been receiving the treatment at his urologist's office. My oncologist was surprised when I told him about it. Any advice would be appreciated. Thanks.

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Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | May 20 11:29pm
In reply to @surftohealth88 "@jeffmarc Jeff , sorry to interrupt 🙂, just wanted to point that you probably by accident..." + (show)
Profile picture for surftohealth88 @surftohealth88

@jeffmarc

Jeff , sorry to interrupt 🙂, just wanted to point that you probably by accident said that your PSA went to 50 when you possibly meant that your testosterone went to 50.
Forgive me if I am wrong 🌺

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@surftohealth88
You are absolutely correct. I was talking about testosterone and wrote down the wrong blood reading.

PSA Of 50 would’ve been a real problem.

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guybe | @guybe | May 21 9:20am
In reply to @kakalena "Thanks. I have had to do most of my own cancer treatments in San Francisco. We..." + (show)
Profile picture for kakalena @kakalena

Thanks. I have had to do most of my own cancer treatments in San Francisco. We will work on getting an appointment at UCSF.

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@kakalena Good idea. I, too, was getting soup-to-nuts treatment through my local urology conglomerate, but a twist of fate got me referred to Johns Hopkins for the cancer-specific care. The difference in standard of care for the cancer-specific assessment and treatment is strong. I'm sticking with my urologist because I have a solid relationship there, but only for urology. For the rest, I'm glad to have gone over to a place where cancer is "what they do", they consult with fellow experts about your case, and are affiliated with a teaching hospital.

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kakalena | @kakalena | May 21 12:00pm
In reply to @jeffmarc "@surftohealth88 You are absolutely correct. I was talking about testosterone and wrote down the wrong blood..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@surftohealth88
You are absolutely correct. I was talking about testosterone and wrote down the wrong blood reading.

PSA Of 50 would’ve been a real problem.

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@jeffmarc
Six years ago my husband's random PSA test came back as 48. I was so incredulous I suggested that he get it retaken. Second time came back at 50. Hence the referral to urologist and all that followed. I appreciate all the responses and replies to my questions. Since the Lupron brought the PSA down to such a low number, I have sort of coasted along until I read a few posts on this website re. prostate cancer. I have been diagnosed with lung cancer and pancreatic cancer so was not as focused as I should have been. One suggestion to men, if you know of someone with cancer, encourage them to become better advocates for themselves. Become informed. Look for alternatives. This website is one way of doing that.

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Profile picture for kujhawk1978
kujhawk1978 | @kujhawk1978 | May 22 7:55am

Well, something is amiss.

I am not a fan of your doctor saying "let's wait 12 months, then see and if, decide...!"

The first thing to consider is seeing an oncologist, one who focuses and has experience in managing PCa.

Your husband has been on Lupron for six years. It may be that the muscle and skeletal pain he feels is a function of the toxicity of Lupron.

Water under the bridge now but his urologist should have done a baseline bone density scan, advised him of ways he could counter the side effects such as resistance training, taking supplements such as D3 and Calcium and in progress scans to determine if stronger medications may be necessary.

His urologist should also have considered ordering in progress PSMA scans to check for PCa activity even in the absence of PSA increase, a possibility.

So, what would I do...?

Fire my urologist...
Find a good oncologist
Ask for a PSMA scan to see if anything is going on
Ask for a bone density scan
Discuss treatment options other than Lupron monotherapy
Start building a multi-disciplinary team to look after his health, easier said than done, I know...

There are other treatment options, a medical oncologist could and should discuss those with you and your husband.

This may be of interest - https://www.urotoday.com/conference-highlights/aua-2026/aua-2026-prostate-cancer/169028-aua-2026-implementation-of-a-multidisciplinary-quality-initiative-to-mitigate-and-reduce-the-side-effects-of-androgen-deprivation-therapy-adt-in-prostate-cancer-patients-based-on-the-prostate-cancer-360-pc360-working-group-recommendations.html

and this,,,https://www.urotoday.com/conference-highlights/apccc-2026/168583-apccc-2026-what-role-does-plays-quality-of-life-in-this-setting.html

Kevin
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mcnobles77 | @mcnobles77 | May 22 10:35am
In reply to @jeffmarc "I am 78. I have been on ADT for eight years. I walk a mile on..." + (show)
Profile picture for Jeff Marchi @jeffmarc

I am 78. I have been on ADT for eight years. I walk a mile on a track twice a day as fast as I can go. I go to the gym three days a week and work with weights the whole time. I’ve had prostate cancer for 16 years And I have BRCA2, which makes it very aggressive.

About a year ago, I found I couldn’t get off the floor without pulling myself up on something so I started going to the gym regularly. I can now get off the floor by myself. You can build back some of the muscle even with low testosterone.

Your husband should be getting testosterone blood test at least every three months. That way, you know where his testosterone level is, It should be increasing and when it does, he should start feeling better and it makes it easier to build muscle if you exercise. He should be getting his PSA tested every three months. There’s no way he should wait a year before getting it tested. If that’s what your doctor insists on, you should find a different doctor. A Doctor that recommends that, is not keeping up with any of the standards of care. If you tell us where you live, we can probably give you the information on a doctor near you. I’ve had my PSA tested monthly for the last eight years, I’ve been undetectable for 30 months, but it can come back at any time.

It’s really important to get out there and exercise. You will feel better. It seems counterproductive, but it does work. People that see me walking every day can’t believe I’m 78 and so active.

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@jeffmarc

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Profile picture for mcnobles77
mcnobles77 | @mcnobles77 | May 22 10:37am

Thank you for sharing your experience especially with the weakness and the exercise benefit to counter the weakness. My husband is going through that at this time and this will help motivate him to NOT be afraid of exercising. Keep posting!

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1 reply
Profile picture for kakalena
kakalena | @kakalena | May 22 1:51pm
In reply to @kujhawk1978 "Well, something is amiss. I am not a fan of your doctor saying "let's wait 12..." + (show)
Profile picture for kujhawk1978 @kujhawk1978

Well, something is amiss.

I am not a fan of your doctor saying "let's wait 12 months, then see and if, decide...!"

The first thing to consider is seeing an oncologist, one who focuses and has experience in managing PCa.

Your husband has been on Lupron for six years. It may be that the muscle and skeletal pain he feels is a function of the toxicity of Lupron.

Water under the bridge now but his urologist should have done a baseline bone density scan, advised him of ways he could counter the side effects such as resistance training, taking supplements such as D3 and Calcium and in progress scans to determine if stronger medications may be necessary.

His urologist should also have considered ordering in progress PSMA scans to check for PCa activity even in the absence of PSA increase, a possibility.

So, what would I do...?

Fire my urologist...
Find a good oncologist
Ask for a PSMA scan to see if anything is going on
Ask for a bone density scan
Discuss treatment options other than Lupron monotherapy
Start building a multi-disciplinary team to look after his health, easier said than done, I know...

There are other treatment options, a medical oncologist could and should discuss those with you and your husband.

This may be of interest - https://www.urotoday.com/conference-highlights/aua-2026/aua-2026-prostate-cancer/169028-aua-2026-implementation-of-a-multidisciplinary-quality-initiative-to-mitigate-and-reduce-the-side-effects-of-androgen-deprivation-therapy-adt-in-prostate-cancer-patients-based-on-the-prostate-cancer-360-pc360-working-group-recommendations.html

and this,,,https://www.urotoday.com/conference-highlights/apccc-2026/168583-apccc-2026-what-role-does-plays-quality-of-life-in-this-setting.html

Kevin

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@kujhawk1978 Hopefully this won't be a double send. My half typed response went into the black hole of my cell phone. Thanks for your suggestions and two very good articles. I have read the pertinent parts to my husband and he agreed. Good starting place.

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guybe | @guybe | May 23 9:16am
In reply to @mcnobles77 "Thank you for sharing your experience especially with the weakness and the exercise benefit to counter..." + (show)
Profile picture for mcnobles77 @mcnobles77

Thank you for sharing your experience especially with the weakness and the exercise benefit to counter the weakness. My husband is going through that at this time and this will help motivate him to NOT be afraid of exercising. Keep posting!

Jump to this post

@mcnobles77 "Afraid of exercising" is a phrase that deserves comment, because I'll bet it's common. We naturally don't want to do things that might disturb our treatment regimens, and the exertion and discomfort (sometimes) of exercise might give some of us cause to think that exercise is such disturbance. But it's the opposite. Pain is damage, but getting the heart and other muscles working a little into the discomfort zone is growth. Just pay attention to the difference, and don't fear. Start easy, and good luck.

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