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Lupron injections, how long? Who should be administering and following
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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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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6 ReactionsThank you for your reply. We live in Mendocino County, California. The
exercise info was especially helpful in getting him to rethink his approach
to this.
@kakalena
Unfortunately, I can’t seem to find any doctors in your area from the NCCN list of Treatment centers and the NCI list.
San Francisco is the closest place to where you’re at, that’s a little too far for basic tests. UCSF would be a good place to go.
You might be able to get more information about a doctor to go to from one of the ancan.org Weekly online Advance prostate cancer meetings. There are a few husbands and wives show up at the meetings together, The wives usually did the talking. They’re usually at least three doctors at the meetings. They can probably give you advice on where to go If your doctor insists on only annual PSA tests. You have to install GoTo Meeting on your computer or phone or tablet, It is free. You put in answercancer For the meeting name. The next meeting is next Tuesday the 26th at 3 PM. Get there 10 minutes early and they will talk to you first and give you advice based on the condition, your husband is in and where he can be treated. Have medical information like his Gleason Score and PSA at time of initial treatment.
Thanks. I have had to do most of my own cancer treatments in San Francisco. We will work on getting an appointment at UCSF.
@kakalena
Here are some doctors to pick from at UCSF
UCSF
Oncologists require you have a metastasis before they will work with you or a referral from another UCSF doctor
Eric Small not real friendly
Rahul Aggarwal #1
Terry Friedlander
Urologist Peter R. Carroll #1
Dr. Carissa Chu
Dr. Mack Roach Radiology
Dr. Seyedin RO #1
Dr. Hsu RO
Dr. Gottschalk RO
Dr. Julian Hong (RO)
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1 ReactionAny weakness is probably from 6 years of Lupron vs getting off of it. It can take a while to recover testosterone (or may never happen) after 6 years at 78. That may have something to do with the 1-year wait. There are lots of companies that will write a lab request at either LabCorp or Quest. Can get uPSA+testosterone for $80 (sub regular PSA $36) at DrSays.com; lots of others for a few $$ more. These sites are cash pay, but expense is eligible for HSA. As long as testosterone is low the PSA will stay low since if he was castrate resistant his PSA would be higher.
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1 Reaction@jim18
I stopped taking Orgovyx in Oct 2024 after being on Lupron for six years and Orgovyx For nine months. I was 77. In seven months, my PSA came back to 50. It was going up 25% a month at that point. My oncologist wanted me to get back on it. I was also on Nubeqa And it kept my PSA undetectable the whole time.
It’s true that some people don’t get their testosterone back, I was surprised mine came back and so was my oncologist.
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1 Reaction@jeffmarc
Thanks for the info. A good starting place
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1 Reaction@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 🌺
@kakalena
I just wanted to add that you can have zoom appointment with any of UCSF doctors and you will get app. much sooner if you do it that way. We live just hour drive to UCSF but we had all of the appointments via zoom.
Wishing you and your husband the best of luck with future treatments 🍀✨ and I am so sorry to hear that your husband suffers so much due to long term ADT use without any guidance about side effect mitigation from your doctor. Maybe it would be a good idea to talk to oncology nutritionist too since I am sure that your husband needs some extra protein, calcium and similar to have successful recovery.