Lupron Treatment Duration: How long were you on it?

Posted by frankstags @frankstags, Jul 7, 2020

I have been diagnosed with Grade 3 prostate cancer with a 4 + 3 Gleason score of 7. This after having 2 PSA scores last year between 4 and 7. The cancer has not spread to the bones. I have received two Lupron injections 3 months apart and will complete 28 radiation treatments in the next couple of days. No surgery. I have tolerated the Lupron shots well with few but manageable side effects. I have an appointment to receive a third Lupron shot next month. My first PSA test after completing radiation won't be scheduled for 3 months. From researching Lupron, it appears that this is used for advanced stages of prostate cancer. From what I was led to believe, I was not advanced. My question: How long and how many Lupron shots might I need to go through? I will have this discussion with my urologist hopefully before proceeding with the next shot. Thanks for any information provided by the group.

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

In the United States, you would’ve probably been taken off of Lupron after six months, Though it was possible that the high percentage of cancer in your cores would Call for another six months of Lupron. You say all the cores were cancerous, but were they all 4+3? Were some of them 3+3 or 3+4?

You had enough Lupron shots for somebody that had a 4+5 Gleason, Which calls for 24 months of ADT.

So the real question is, since PET test shows you’ve had no spread, why are they demanding you stay on Lupron? You would definitely have doctors letting you get off lupron, and see how you were doing, in the USA.

Say to your doctor, “USA NCCN Requirements call for only six months of Lupron for a 4+3 why are you on it for two years”. What in your specific case calls for such long-term ADT?

It doesn’t make a lot of sense.

REPLY
Profile picture for frankstags @frankstags

After receiving input from this message board, I contacted my doctor and asked him the same question. I received two injections in Feb and May and was scheduled to received another one in August. He agreed to wait until receiving my first post radiation therapy PSA test to discuss further. This will be in the Oct-Nov time frame. At least it will spread me out to a 6 month interval if he feels I need another one. Again, it appears there is no consistent methodology for
determining how many shots are needed.

Jump to this post

@frankstags Hi...I'm a little late with my response...about 5yrs lol. I was diagnosed with Prostate Cancer in the fall of 2023 at the age of 56...no symptoms of any sort..found out through blood work that I had done for life insurance for the new house I purchased. When they called to tell my they declined my life insurance due to my PSA levels being elevated...we visited the clinic that day and another round of blood work showed my PSA levels at 52. I was referred to a urologist and was seen a week or so after. I had a biopsy procedure done that week with 15 biopsies taken and all cancerous. Next I had a bone scan done, a CT Scan completed in Nov. and was able to get referred as a "trial" for a PET scan (in Canada, the PET scans are only in a few hospitals and done by meeting the "trial" requirements) and had this completed in early Jan. 2024. I had a Gleason score of 7 4+3, but to the urologist and PET scan urologists surprise ALL of my scans showed no signs of the disease spreading, all contained to the full prostate and surgery was not recommended as the top urologist in Ontario stated he would not be able to complete the surgery to a - (negative) and radiation and ADT (Lupron) plus the additional complications. So I started Lupron at that time (Jan). I started radiation treatment Feb until April. (25 sessions - 5 days a week for 5 weeks) and I had Lupron shot every 3 months. My 6mth follow up post radiation (Oct. 2024) with Oncologist showed my testosterone was still blocked 0 and my PSA levels were 0.18. I completed 2 more shots of Lupron (1 complete year - 4 shots). April 2025 I had my blood work done again and the testosterone was still blocked at 0 and my PSA was 0.08, I refused getting another shot and asked to had bloodwork done in 3 months...so July 2025 testosterone still blocked at 0 and PSA levels 0.03. Again against the oncologists wishes (and his bedside manner wasn't very pleasant in April and he didn't show up for the July in office appt. we just had the nurse who is fantastic) I declined the shot and asked to be monitored every 3 months and IF the PSA levels started to rise above 1, I would start back on Lupron. I received a voicemail this week regarding the oncologist's recommendation of going back on Lupron and having my blood work done early Dec. and an appt with him the week after to discuss going back on Lupron. Can someone please tell me why he is pushing so hard for me to continue on a drug that shows no consistent methodology for determining how many shots are needed? Does the oncologist get a $cut for every script he writes for it? Each appt., he was unwilling to listen to my questions or concerns and we have a right to advocate for our own bodies. I am back to feeling human, I feel good, lost the weight I had gained, I am regaining some muscle tone...overall I am a very healthy man...why can't we monitor every 3 months and go from there? Just wondering over here in Canada

REPLY
Profile picture for Jonesfit65 @jonesfit65

I am a very frustrated wife, retired RN, and have followed his PC much more closely than all his Drs, it seems. We are 77, married 60yrs, but I feel more like about 60! He's been to a couple Urologists & several oncologists since 1st told his wait/watch PC had spread according to 1 CT. He was told he would live only 5yrs tops if he didn't have the Lupron shot! And so since 3/2021, it's gone on: PSA < 0.1 since that 1st shot. I remember > $5,000 is charged to Medicare every 3mos for over 4yrs, and I can't find anyone that doesn't want to continue "until it quits working"! I don't mean to ramble. Thanks for any support!

Jump to this post

What you’re facing is what happens to almost everybody on ADT. At some point, their PSA starts rising and they become what is called castrate resistance. It took me 2 1/2 years, which is the average. Once you hit Castrate resistant, you then must go on an ARSI (Zytiga or a Lutamide) Which then can keep your PSA down for even longer.

The thing is, they have found that if somebody goes on a lutamide like Apalutamide or Zytiga it can delay castrate resistance for more years. Your husband should discuss this with his doctor and maybe consider getting on an ARSI.

The median overall survival once you become castrate resistance is a little over two years. That means as many people last fewer than two years as last longer. I am six years past that point, But my cancer case was not as aggressive as your husband, and that is a major factor in longevity.

I’m also 77 now and started this when I was 62. I have the BRCA2 genetic problem, Which prevents my body from correcting genetic errors. It can lead to much shorter survival. As your husband been tested for genetic issues. You can get it for free at.

Prostatecancerpromise.org

It can make a big difference, knowing if you have a genetic problem there are drugs for certain genetic issues.

Somebody telling you you’re going to live only five years is absolute nonsense. I know so many guys with very serious prostate cancer cases that have lived Twice as long, and longer, than their estimates.

Do you know what your husband‘s Gleason score is? That is very important to know what the future can bring. Also, the details of the biopsy are very critical for understanding how critical a case is. If any of these were found in the biopsy intraductal, cribriform, Seminal vesicle invasion or ECE they make the cancer much more aggressive.

Hope this helps.

REPLY

I am a very frustrated wife, retired RN, and have followed his PC much more closely than all his Drs, it seems. We are 77, married 60yrs, but I feel more like about 60! He's been to a couple Urologists & several oncologists since 1st told his wait/watch PC had spread according to 1 CT. He was told he would live only 5yrs tops if he didn't have the Lupron shot! And so since 3/2021, it's gone on: PSA < 0.1 since that 1st shot. I remember > $5,000 is charged to Medicare every 3mos for over 4yrs, and I can't find anyone that doesn't want to continue "until it quits working"! I don't mean to ramble. Thanks for any support!

REPLY

Hello,
I was diagnosed at age 66 with G8 4+4 PC, the treatment that I chose was radiation and that was 45 treatments over 9 weeks and then 12 months of Lupron. Ice been off Lupron for 1 year now but I have no Libido, no stirring, no desire to even try, if I try to master bate it's like beating a dead horse, I have a penile implant but there just aren't any feelings, my breast's became moobs and I really would enjoy intimacy with my wife again but there just isn't any fuel in the tank. I have no idea if I'll ever feel intimacy again and now I'm only 68 years old, to young to just give up.
Thanks for reading, any comments are welcomed

REPLY

I too was 4+3 G7. 66 year old, PSA was 10 after a failed Hi-Fu. I was informed by my radiologist that based on my numbers, ADT was recommended to compliment the radiation effectiveness. It seems there is a higher success rate when combined. Not wanting to take any more chances, I went with the prescribed 4 mth ADT program and 28 Rads. Testosterone went to 2.5. After 9 mths, PSA still undetectable 0.02, However, most recent PSA showed slight uptick to 0.08, (T level reached 300), hopefully nothing to worry about.....Best to all

REPLY
Profile picture for rkj2019 @rkj2019

What are /were your side-effects from Lupron and also Nubeqa? Do you have libido after all hormonal therapy? Leg weakness, joint pain, brain fog, gynecomastia?

Jump to this post

@rkj2019, you may be interested in these related discussions:
- Gynecomastia (male breast enlargement) bc of ADT-prevention/experience https://connect.mayoclinic.org/discussion/gynecomastia-male-breast-enlargement-due-to-adt-can-it-be-prevented-1/

- Gynecomastia while taking hormone therapy for prostate cancer https://connect.mayoclinic.org/discussion/gynecomastia-while-taking-hormone-therapy-for-prostate-cancer/

- Can we talk about boobs please? Man Boobs. ADT induced gynecomastia. https://connect.mayoclinic.org/discussion/can-we-talk-about-boobs-please-man-boobs-adt-induced-gynecomastia/

You can use keywords in the group search to find other related discussions, like https://connect.mayoclinic.org/group/prostate-cancer/?search=Leg+weakness#discussion-listview

REPLY

I was on luprone and Erleada for a year and it was tolerable. Some brain fog, flashes, sleep disorder , loss of sex drive but it was medicine that has helped to keep me undetectable for 3 years. I am G 9, CR, locally advanced.

REPLY
Profile picture for doors4ever @doors4ever

Late to the conversation. Just wondering why your not seeing an oncologist at a cancer center? I was diagnosed with agressive metastatic stage 4b pc. PSA 40. Gleason scores all 4+5 or 5+4, Pirads 5. Spread to pelvic bones and lymph nodes. 6 docataxel chemo treatments, 6 radiation treatments, 2 years Lupron and Nubeqa and PSA is holding at .02. PET scan shows no cancer. Even bone cancer is gone. I went to MN Oncology. Just can't say enough about the great treatment I got there.

Jump to this post

What are /were your side-effects from Lupron and also Nubeqa? Do you have libido after all hormonal therapy? Leg weakness, joint pain, brain fog, gynecomastia?

REPLY
Profile picture for doors4ever @doors4ever

Late to the conversation. Just wondering why your not seeing an oncologist at a cancer center? I was diagnosed with agressive metastatic stage 4b pc. PSA 40. Gleason scores all 4+5 or 5+4, Pirads 5. Spread to pelvic bones and lymph nodes. 6 docataxel chemo treatments, 6 radiation treatments, 2 years Lupron and Nubeqa and PSA is holding at .02. PET scan shows no cancer. Even bone cancer is gone. I went to MN Oncology. Just can't say enough about the great treatment I got there.

Jump to this post

I was on Lupron several years. The last time my cancer recurred I went to UCLA for a PSMA PET scan. Four metastases were found. I underwent SBRT for them, took Nubeqa for 24 months, then stopped all treatment. My PSA has been < 0.008 since.

REPLY
Please sign in or register to post a reply.