Lupron dosing: side effects for 3 month dose vs. monthly dose

Posted by dave2020 @dave2020, Mar 15, 2021

I have been very fortunate in my Prostate cancer recovery. I have had virtually no side
effects from the radiation, and until the last six months, no side effects from the Lupron
injections that I am scheduled to receive for a total of 24 months.

Initially I took several shots on a monthly basis, then took a 3 month dosage. Again no
real side effects. Since I was going to be away from the Mayo Clinic in Florida for
several months I took a 6 month dosage shot.

Within 3 weeks I was a wreck. No energy at all. Did not even want to get out of bed in
the morning. Muscle aches and constant cramping, especially in calves. I could
remember names or dates and felt like I was in some insane type of dream.

It was horrible. I considered quitting the Lupron even though my doctor said it was a
vital part of my treatment.

So, I decided to go back to a monthly shot, hoping it would not be as lethal to my health.
Within 2 weeks I had so much more energy it felt as though I was given some other type
of drug. Muscle pain and cramping lessened and overall I felt much better.

I am writing this to the group to see if anyone else has gone through this when going to
the longer acting dosages. I could find nothing on any sites or any studies that even
mentioned dosage and side effects comparisons.

For now I will continue with a monthly program and hope the better feeling continues.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@pwitkin

I am now 8 years into the battle. Surgery with clean margins but one year later PSA spiked. Then radiation and Lupron combined with two years of 150mg/day Bicalutimide. psa undetectable but then PSA then returned after 14 months. Treated angain but only get 6 month undetectable. We are now doing 3 month intermittent treatments of Lupron and 50mg/day Bicalutimide. This gives my body time to recover a bit for my bones, liver and muscles. The first time my PSA stayed undetectable for 14 months, but we found three very small tumors in my pelvic lymph nodes. Treated again and only got 6 months. Treated again this week and will check PSA every two months going forward. Our plan is to treat when PSA is above 2.0. Keep doing it till I become resistant and then either find an alternative drug or go to continuous treatment to keep the PSA below 2.0. I am tolerating it all well with moderate hot flashes. But not sure what I can do about then belly fat I am accumulating. Hate that, but it’s vanity.

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yeah the belly fat is an issue I am not sure how long to keep up with the lupron i tolerate it well and if i am careful the belly fat seems to back off but it is a constant issue it is vanity for sure but also a health thing you may be giving me a sample of things to come i am 76 now and who knows how long my body can handle it exercise helps a lot have only doing this for one year

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Thank you. I need to increase my exercise for sure. I do warehouse work but it very light. I need to left weights to protect my bones as well. I’m 69 so a bit behind you in age, but I got the aggressive cancer pretty early.

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@pwitkin

I am now 8 years into the battle. Surgery with clean margins but one year later PSA spiked. Then radiation and Lupron combined with two years of 150mg/day Bicalutimide. psa undetectable but then PSA then returned after 14 months. Treated angain but only get 6 month undetectable. We are now doing 3 month intermittent treatments of Lupron and 50mg/day Bicalutimide. This gives my body time to recover a bit for my bones, liver and muscles. The first time my PSA stayed undetectable for 14 months, but we found three very small tumors in my pelvic lymph nodes. Treated again and only got 6 months. Treated again this week and will check PSA every two months going forward. Our plan is to treat when PSA is above 2.0. Keep doing it till I become resistant and then either find an alternative drug or go to continuous treatment to keep the PSA below 2.0. I am tolerating it all well with moderate hot flashes. But not sure what I can do about then belly fat I am accumulating. Hate that, but it’s vanity.

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I'm 5 months into the battle. I'm on 1000mg of Abiraterone daily with Prednisone. Lupron and Xgeva every 3 months. I joined my local gym at the beginning of May to maintain muscle mass and minimizer belly increases. I've never had a chiseled physique. I've just been naturally thick and strong, which I don't want to change so I understand the vanity thing. I remain hopeful that there will be better options for those of us with PC soon. This was promising but it wasn't an option for me since I have Mets to my hip and sacrum: https://www.mskcc.org/cancer-care/patient-education/high-dose-rate-brachytherapy-treatment-prostate

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Very interesting. I took Lupron for 25 months mostly with 6 month shots. After several I wanted to quit the Lupron because I had no energy, my legs particularly were weak but the doctor insisted I continue with the Lupron.

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@hergiew

Very interesting. I took Lupron for 25 months mostly with 6 month shots. After several I wanted to quit the Lupron because I had no energy, my legs particularly were weak but the doctor insisted I continue with the Lupron.

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My comments were cut off but after 25 months of taking it, the Lupron destroyed my body's ability to produce testosterone so that I now have practically no testosterone, am depleted of energy and my lifestyle has been substantially negatively impacted.

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About a year ago I found out that my PSA started rising. My urologist sent me to a radiology oncologist for a consult. He suggested 8 weeks of 5 days/wk of 15 minute sessions. My urologist suggested 2-3 years of Lupron, a shot every 3 months. I asked him if it would be better for me and side effects if I had the shots once a month? After reading many of the responses, that seems like a better choice, since there are so many negative side effects from the medication. My urologist wants me to do the shot every 90 days, but I will ask him for the once a month. I am still working and I really don't need many of the side effects others have been experiencing. I also asked him about the length of treatment and he said that I need to go 2-3 years, which doesn't seem like the same advice others are getting. I may consider getting a second opinion.

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Today I contacted The City of Hope and scheduled an appointment with the organization for a second opinion. I had felt for some time I needed a second opinion primarily because when I started seeing my current urologist he had ordered a PSA and the results indicated that I no longer had cancer, so he suggested to me that I should consider testosterone pellets, since my testosterone level was low. I had 7 pellets for three months and another 7 three months later. In the 5th month my PSA started moving up. My urologist claimed that this has never happened before for him. He had asked me if I feel any different with the pellets and I told him no, I couldn't really tell the difference. Giving me these pellets was a red flag for me. Move ahead months and my PSA rises to 0.90 and he suggests seeing a radiation oncologist in Tustin. When I return to the urologist he suggests Lupron shots every three months. I asked him how about every month? Is there any difference with the two periods of treatments and he said not really. When I read online many men are having significant side effects I am thinking every month would probably be better for the control of side effects. The one guy above had a 6-month shot of Lupron and he had terrible side effects. So, the urologist's input that it doesn't make any difference is suspect and the second red flag. This is why I contacted The City of Hope, which has offices all over southern California. My urologist works with some patients that have or had prostate cancer, but the City of Hope specializes in the area of cancer. I need to see doctors who treat prostate cancer patients daily, not occasionally.

By the way many years ago I was seeing a PA at my MD's office. My PSA kept creeping up and doubling every year. He said nothing until it became double digits. If he had alerted me to the problem when it was low (< 7.0), but increasing, I would have not had a 4+4=8 Gleason score prior to the robotic surgery with the De Vinci System. After surgery it was a Gleason 9, which means the cancer moved beyond the prostate. Men need to keep an eye on the PSA score moving from < .3 on the first generation testing equipment, < .03 on second generation testing equipment, and < .003 on third generation equipment. You can tell what generation the equipment they used at your lab by the digits to the right of the decimal point.

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@ringmastr1

I'm 5 months into the battle. I'm on 1000mg of Abiraterone daily with Prednisone. Lupron and Xgeva every 3 months. I joined my local gym at the beginning of May to maintain muscle mass and minimizer belly increases. I've never had a chiseled physique. I've just been naturally thick and strong, which I don't want to change so I understand the vanity thing. I remain hopeful that there will be better options for those of us with PC soon. This was promising but it wasn't an option for me since I have Mets to my hip and sacrum: https://www.mskcc.org/cancer-care/patient-education/high-dose-rate-brachytherapy-treatment-prostate

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I'm sorry to hear that your cancer has metastasized into your hip and sacrum. Good luck with your fight.

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Thank you for revealing your particular results with a 6-month injection. This suggested to me the lowest dose or monthly dosage is probably the best to minimize negative side effects. It would seem that when you receive the injection for 3 or 6 months, that the medication cannot possibly be perfectly distributed evenly for the entire 3-6 months, you are going to get more at certain times triggering a greater chance of side effects and their intensity.

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Very interesting read. I was told today that Lupron and radiation would be the best treatment for my aggressive Gleason 7 (4+3) prostate cancer. Also have seminal vesicle invasion. The potential side effects make me uncomfortable with Lupron. Any options that others have tried with success? Thank you, Ken

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