Diagnosed fall 2019.... PSA of 12.....Prostate removal Dec. 2019
PSA 2.5 Post surgery , Started lupron 3 weeks after surgery
PSA dropped to.17
My Gleason score was 4+3 (7)
Cancer was in prostate bed..post surgery...... 39 radiation treatments
After 24 months of Lupron and 18 months undetectable PSA <.01
Oncologist is suggesting getting off lupron and "seeing how things go "
Really struggling with decision. Take another 6 month dose or not ?
Thoughts ??
I always milk every drug for al they are worth. If it's still working, stick with it.
Alex,
I am 2 months into a vacation from Lupron after having been on 3 month doses for 4.5 years and having undetectable PSA for 4 years. I also struggled with the decision to do this and was sorely tempted to adopt Magnus's "if it ain't broke, don't fix it" attitude. But I know that long term, having very low testosterone is not good for my body. And two MOs have assured me that taking a vacation will neither hasten nor delay time to castrate resistance, so I'm trying it. My first T and PSA measurements are coming up in about 2 weeks. I don't feel any different yet, and given how long I have been on ADT, I expect it will be some time before anything changes.
Thanks G ...Keep me posted.God bless.
"And two MOs have assured me that taking a vacation will neither hasten nor delay time to castrate resistance, so I'm trying it."
Yes, this was a factor for taking an ADT break, which lasted about 10 months. The PSA then started doubling every month from 05/19/21-PSA 0.09 to 10/22/21-PSA 2.17, restarted ADT on this date.
Then at this point, the next 2 tests: 12/3/21-PSA 0.20 ( T <3 ng/dl) and 1/21/22-PSA 0.13, sorry, for the dates fatigue, so after the ADT break still hormone sensitive.
But the plot thickens, started radiation treatments: SBRT (one treatment) to left scapula on 11/22/21. Followed by SBRT series to prostate/pelvic node: 12/10/21 to 1/21/22 .
So, per Dana-Farber, the ADT break was a great decision, it helped for providing an effective strategy for PSMA PET/CT directed radiation treatments.
Side effects, yes..... but manageable. Weight gain , periodical hot flashes.No fatigue no muscle soreness. My Lupron, 6 month shot, "expired" 1/30/22. Urine test came back neg. for C
I have an appointment/consult Mid-March with oncology at Mayo in Rochester.
Your radiation treatment may have been effective in eliminating the cancer. The only way to know after 24 months of ADT is to stop ADT and see what happens with the PSA and radiographic studies.
The intent of your treatment was to cure you. It will take a while for your T to recover but its time to see if you were successful. I hope you are free of this. Think positive thoughts!
You are in the same situation as me....2 years of ADT after a failed RP in June 2019 and 39 IMRT starting October 2019. You are finished your initial treatment. You need to see if was curative.
I was in a similar situation. I have details in my profile.
I had recurrence after RP, did radiation and 18 months of ADT (6 three month Lupron shots) but Testosterone took an additional 6 months to get over castrate levels so I had an effective 2 yrs of ADT.
I haven’t regretted the decision because I have maintained undetectable since last Lupron shot in November of 2018.
It was a tough choice. But I’m glad I did it . With and without ADT I have been undetectable since about Aug of 2017.
I’m 57 now. Hoping for 57 more.
Rick on brethren!
Uh, that should be “Rock On “ not rick on. No one listens to Rick and Roll. LOL (But “Rick and Morty” is great !)
Rick in Shaw business....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/16/2022 6:25 PM EST
Thanks Fine...... truly appreciate.
I think you have just answered my question
ROck on brother
appreciate your reply.....Side effects, yes..... but manageable. Weight gain , periodical hot flashes.No fatigue no muscle soreness. My Lupron, 6 month shot, "expired" 1/30/22at Mayo earlier in the week did a urine test, came back neg. for infection and cancer.
I have an appointment/consult Mid-March with oncology at Mayo in Rochester
It's your decision, but remember that in addition to quality of life (QOL) issues with Lupron there are also known morbidities associated with its use (sarcopenia, metabolic syndrome, bone loss, and increased risk of vascular disease). I personally am risking suspending Eligard shots (basically the same thing as Lupron) and monitoring my PSA in exchange for hopefully better QOL. And my physicians agree with this decision. Good luck to you!
I just got my second lupron. Pre test & marking today, Seeding & spacing next week. 29 radiation treatments. The latest journals recommend 1.5 to 3 years (11/22/2021). I’m going with 6 so I can see if it worked. Gleason 4+4=8. Every biopsied area had cancer on the right, all good on the left. Contained in the prostate per bone scans , mri of belly & pelvis area, but they never know about microscopic cells that won’t be detected. Not the way I prefer to spend my bday. #64–2day✌️🎶🎉🥂
Seeding and spacing . My sweet wife as in the room during that on . Too was gl 8 . Imrt and Lupron worked for me .
I should have added that I didn't have any known metastases, though, and just received RT, brachytherapy, and ADT.
24 months of Lupron with SRT is long enough to see if it worked.
Side effects, yes..... but manageable. Weight gain , periodical hot flashes.No fatigue no muscle soreness. My Lupron, 6 month shot, "expired" 1/30/22
I have an appointment/consult Mid-March with oncology at Mayo in Rochester
Go for it! The side effects of Lupron are horrible I’m on a Lupron vacation and waiting for T to return. The fatigue weight gain and hot flashes were aweful. But it worked on my PSA from 3.5 to undetectable I’m hoping for an equally effective substitute should it rise again.
Sounds similar to your case, but I remained on Lupron even with a zero PSA. Danged if after sometime (year or two) the cancer did spread to my bones. Personally I suspect my spread would have happened faster had we discontinued the Lupron, but we'll never know.
There are different types of prostate cancer cells and more than one type may be present in a person's prostate. Some respond to ADT using hormones like Lupron, and some don't. Mostly the treatment-susceptible cells exist in people, but not everyone. And about 25% of patients being treated with ADT see it lose its effectiveness over time, possibly because the hormone therapy actually causes treatment-susceptible cancer cells to convert to treatment-resistant ones. Like you say, it's hard to say what would have happened if you had discontinued the Lupron. More research needs to be done to find better treatments and guidelines for using them.
I'm getting 3-month injections because my oncologist believes those are better. Prostate removal when the cancer has not left the prostate is supposed to be curative; however, another Lupron shot or two seems like a small price to pay for piece of mind.
Are you having unpleasant side effects?
Side effects, yes..... but manageable. Weight gain , periodical hot flashes.No fatigue no muscle soreness. My Lupron, 6 month shot, "expired" 1/30/22
I have an appointment/consult Mid-March with oncology at Mayo in Rochester
Lupron verses Eligard
Ok to take a Lupron Vacation?
Going with Lupron alone after slowly rising PSA 
Rising PSA 1 year after radiation and 6 months after Lupron
Lupron failing 
