Lupron - living with the side effects

Thank you for the welcome - and the comments.

My Gleason was 3+4 and my PSA was 20. I had been having biopsies since the late 90's due to chronic high PSA - between 5 and 9. Five biopsies over the years found nothing to be concerned about. After my PSA started increasing in late 2022, my urologist recommended having an MRI fusion trans-perineal biopsy at Cleveland Clinic. The MRI had shown a few suspicious areas and the excellent doctor at Cleveland Clinic was able to use the MRI images to guide his sampling to the suspicious areas and found cancer in them. A Decipher test indicated that I was at the high end of a moderate chance for metastasis. Due to my age (76) the docs decided radiation along with ADT would be the way to go.

The radiation was annoying but tolerable and with no immediate side effects. The Lupron was/is another story. Had to see a gastroenterologist last week due to passing bloody mucus. Radiation proctitis is the preliminary diagnosis but he wants to do a complete colonoscopy to make sure the bleeding isn't coming from areas other than the part of the rectum affected by the radiation. Colonoscopy scheduled for Feb. 1

I chose the name "Oldernow" because the last year has caused me to feel OLD for the first time. My health was good with few age related complaints. Hoping that I will be reborn after the Lupron is out of my system - 😉

Thanks for your input -

My radiation oncologist mentioned Orgovyx as an option along with a couple of others. He and my urologist both seemed to push the tried and true Lupron. I am too far into the treatment to change now. I am due for my third and last six month Lupron shot in early April.

Update - Had a colonoscopy on Feb 1 that detected moderate CRP - Chronic Radiation Proctitis. I have just started on Mesalamine suppositories for 3 to 6 weeks to treat the inflammation and minor bleeding. Doing my research on Lupron I found that it can contribute to the possibility of developing radiation proctitis - just another gift from Lupron...

Thanks again for your input 👍

I never checked the cost of Orgovyx. I CAN tell you that the 6 month Lupron shots I have had (2 so far with one to go) are outrageously expensive. My Medicare has been billed over $40,000 for each shot so far (that is not a typo). The insurance pays about $3000 per shot with my out of pocket about $300 per shot.

Lupron has been around for well over 30 years. It is a crime that they can get away with charging so much for it. I guess if you don't have insurance you are screwed...

Update -

Saw my urologist yesterday (April 15)

A year after starting ADT (Two 6 month Lupron injections) and 28 radiation sessions (ending last June), my testosterone is still at <12 ng/dL and my PSA has stayed at < 0.03 ng/mL (since completion of radiation).

I was due to get my third and final Lupron injection yesterday but chose not to after reading a lot of articles and comments about ADT. I turned 77 last Sunday. At my age, testosterone recovery (following Lupron) will probably be very slow if it recovers at all. My urologist agreed that I will probably retain a very low testosterone level for at least the next 6 months. My doc said the 18 months of ADT was the protocol requested by my Radiation Oncologist. Since my testosterone will probably remain low I decided the last injection (to keep it low) was unnecessary.

As I said in my initial (#1) comment - "I want this med out of my system ASAP so I can start feeling "young" again."

My side effects will probably continue as long as my testosterone is low. That is tolerable as long as the PSA stays <.03 ng/mL.

I follow up with the Oncologist in June and will continue to have PSA tests every couple of months. He has already suggested that I may need testosterone "replacement" therapy at the end of the 18 months.

Neither doc has uttered the word "cure" but my urologist said he doesn't need to see me for a year. I am not sure how long the PSA has to stay undetectable for the docs to consider it a "cure."