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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.

anonmike | @anonmike | Oct 3 5:38am

I've had a month shot of Lupron and then a 3 month, I can't say there is a material difference, I do notice tiredness that I work on with naps. Has any one had exerience with surgery, i.e. Orchictomy? Thanks.

REPLY
chamblee54 | @chamblee54 | Oct 3 12:54pm
In reply to @dv123 "Today I contacted The City of Hope and scheduled an appointment with the organization for a..." + (show)
@dv123

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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I did one month shot at first to be able to stop if I had bad side effects. Then I was able to get orgovyx for the next 3 months.
Had the usual side effects but it worked. Psa < 1. But I also did radiation at same time.

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dv123 | @dv123 | Oct 3 2:38pm

Excellent. I have an appointment with the City of Hope next week in Long Beach, CA. Today I was interviewed by a nurse asking for my imaging and pathology reports. [My urologist never asked for the reports, he just asked me about what I knew. This should be a red flag. I always wondered why he did not get access to the USC portal? I believe he was just treating me for symptoms and not concerned about the things USC had done. Conversely, City of Hope is concerned.] City of Hope was unable to access my records online through USC Keck Urology. I told them that they needed to use my middle initial. I pulled up the pathology, which I had never read. In my case 30% of the prostate had a cancerous tumor and one lymph node 2 cms in size had a spot .1cm that was cancerous. All the other lymph nodes appeared to have 0 cancer. After 4 weeks I read my PSA was < 0,03ng/ml. I believe the PSA started rising 9-12 months post op, but that is just a guess. I also read 30% of guys having prostate ca removal have re-occurring ca in that area. At 12-18 months my urologist starting me on testosterone therapy which pushed the PSA up. In retrospect I wished I hadn't consented to the testosterone pellets so soon.

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miked77 | @miked77 | Oct 4 8:24am

As a retired pharmacist and a prostate cancer patient, I chose treatment with Orgovyx rather than Lupron injections. My education in pharmacy convinced me that ALL Long-acting injections did not give consistent and even blood levels. When blood levels are not consistent, this will likely lead to fluctuating side effects. Taking a pill daily will give you steady levels of the drug and possibly fewer side effects. Good luck to all!

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linric70 | @linric70 | Oct 4 9:33am

My husband was given a 6 month Lupron shot, the doctor didn't mention any side effects! Within a month he was literally having sweat drip off of his arms, I've never seen anything like it. Thank goodness our new doctor suggested Orgoryx. It does the same job lower his PSA but unlike Lupron if he can take a vacation from the drugs once his PSA is down it will be out of his system in 3 days! Lupron lingers in your system.

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