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How many months of Lupron?

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Posted 10/1/2022 7:19 AM (GMT 0)
My husband's doctor has mentioned that there isn't a lot of research in this area--not yet anyway. Specifically, how long should someone be on Lupron in conjunction with salvage radiation where lymph node involvement has been found on a PSMA scan.

In my husband's case, the oncologist initially said that it would be 2 years of Lupron. Then he said between 12 and 18 months should do it. Now, more recently, he's saying 12 months.

For those of you who had a PSMA scan that found lymph node involvement, and then had radiation, I'd like to know how long you were on Lupron in conjunction with the radiation. Thanks!
Posted 10/1/2022 9:16 AM (GMT 0)
The recent studies I have read suggest 24 months for node positive disease.
Posted 10/1/2022 3:07 PM (GMT 0)
Yep,
As Duck2 said, the trend seems to be reversing from what I can see. The latest seems to say there isn't any benefit for less than two years. I think most guys aren't going to want to hear that, but if you're going to go for a cure, you might as well give it your best shot.
Posted 10/1/2022 5:55 PM (GMT 0)
Melanie,
I know I am not answering your actual question, which is personal ADT experience with Salvage Radiation, but I will add that there are innumerable studies on the subject, and they often seem contradictory. Whatever the current trend might be, a longer time on ADT would *seem* better to me.

A reasonable plan might be to see how well your husband tolerates ADT. He can always keep going with it for max benefit, or stop if it's too much. Maybe something to run by his doc.
Posted 10/1/2022 7:08 PM (GMT 0)
I was NOT node positive and have never had a PSMA scan, but I was on Lupron during the time of my adjuvant RT... ART that was recommended due to adverse pathology discovered during RP. The urologist who did my RP said that I would be on Lupron for three years, which was standard at that time. But there were some studies which showed that 18 months of ADT was often as effective as 36 months.

My RO wanted 9-12 months of ADT, two months before, during and after the RT which would commence as soon as I regained continence, which never happened. After finishing RT - at this point one year post RP, the RO told me that the radiation would continue to work (i.e., kill cancer cells) for about eight months after the end of treatment, so I opted for a third six month shot of Lupron, to bring it up to the (at that time) 18 month recommendation.

As that was in 2018 I expected my testosterone would recover within a couple of years. That came and went a long time ago. My cancer journey started with some testicular trouble (an orchiectomy), so I'm not sure that the Lupron didn't kill my remaining testicle. But now five years later I'm resigned that I will be castrate for life. My Uro says that the low T will help keep my cancer in check and strongly urges that I not pursue supplementation.
Posted 10/2/2022 1:59 AM (GMT 0)
Had RP in April, 2013. Spring 2018, with a PSA 1.17, was referred to a clinical trial using a PMSA PET scan which identified 2 small hot nodes in presacral area. URO said he would not remove nodes surgically as they were too small and hiding behind tons of major organs. Recommended RT and 2 years of Lupron. I said no to the ADT but after talks with my RO, we agreed on 6 months. Started ADT before RT which was in December/18.

Everything has gone well as of my last blood test in July PSA= <.04 which they said was undetectable.

Maybe down the road my thoughts regarding Lupron will change if my PSA is going up quickly or if there are distant Mets but as of today, i believe I made the right choice.

Dave
Posted 10/2/2022 3:01 AM (GMT 0)
the doctor sounds wishy-washy. i do not like that defect of character in my doctor
Posted 10/3/2022 5:04 PM (GMT 0)
I'm on it for life. 8 1/2 years minus ADT vacations.
Before going castrate resistant I had 3 ADT vacations.
Always starting ADT backup when my PSA started to rise.
Posted 10/3/2022 5:20 PM (GMT 0)

mattam said...
Melanie,
A reasonable plan might be to see how well your husband tolerates ADT. He can always keep going with it for max benefit, or stop if it's too much. Maybe something to run by his doc.

Sounds quite reasonable to me as well!
Posted 10/6/2022 4:10 PM (GMT 0)
There is no set answer. All of us react differently to the various treatment options. In my case, I started ADT a couple years after radiation which was six months after RALP. Radiation had no impact on my PSA, so ADT was next treatment. I was in no rush to start since doc explained I'd likely be on it for life. Nine months of ADT got PSA down to undetectable. I took a vacation for personal reasons (daughter's wedding). PSA and testosterone showed back up in first test after taking six month vacation from ADT. Doc said we can continue the vacation and test again in three months with PSMA scan to see if we can identify where it is. In most men, PC eventually becomes castration resistant, meaning it grows despite the absence of testosterone. Some doctors believe taking ADT vacations helps delay reaching castration resistance. Who knows?
Posted 10/6/2022 5:36 PM (GMT 0)
I started Lupron January 2014,
I had radiation Summer 2015
I stayed on Lupron or the like since (except for short vacations)
This January will be the beginning of my 10th year.

I think it all depends 1st on the man and how otherwise healthy he is, then on how widespread the disease is.
Posted 10/7/2022 12:57 PM (GMT 0)
Hi Melanie,
I'm in the middle of ADT treatment right now. I'm getting treated at Memorial Sloan Kettering (MSK) in NYC. I started 3 mth hormone shots in May '22. I will take them for 2 yrs. In June '22, I had 40 sessions of SRT. My pathology report post RP (Apr '20) showed 2 out of 10 lymph nodes having tested positive. At 2 yrs post RP (Apr '22) my PSA rose to 0.22 which is when I was scheduled for ADT and SRT. All scans and tests showed no spread prior to starting hormones and radiation treatment. My doctor was pretty straight forward that it would be 24 mths vs 12 or 18 mths given my pathology and age (54). He's optimistic that a cure is still a real possibility, so you fall in line and deal with the process and side effects.

Hope that helps.
Posted 6/8/2023 11:35 PM (GMT 0)
Thank you all for this information. I'm not sure why I hadn't replied earlier. (That may have been when I had to shift my attention to my father and his rising PSA.) Here's the update:

My husband is due for another Lupron shot soon (at 18 months) which will take him to 21 months. So far he's been tolerating it well. He has had minimal weight gain (5 lbs), but because his cholesterol numbers and blood pressure have gone up, he's considering not taking this shot. (I believe there are other quality of life concerns as well.)

As usual, my husband's MO is presenting the options and letting my husband decided. The medical center where he is being treated is very heavily into the "patient led" kind of medicine which sometimes feels like there's not enough guidance. I mean I agree that I wouldn't want certain decisions pushed on him but a little advice or guidance would be welcome.

Does anyone else have any information about how long to take ADT? This is in the salvage radiation setting, and after a PSMA-Pet scan has shown pelvic lymph node involvement (one node).

Thanks!
Posted 6/9/2023 12:16 AM (GMT 0)
Melanie,
How is your husband’s psa doing while on lupron?
Michael
Posted 6/9/2023 1:22 AM (GMT 0)
Hi Michael60,

My husband's PSA has been undetectable while he's been on Lupron. Our hope, of course, is that it stays that way once he goes off Lupron and his testosterone recovers (assuming it recovers).

Thanks for asking
Posted 6/9/2023 1:32 AM (GMT 0)
Also for those who are interested in this topic, Djin started a thread about a study that looked at the length of ADT with radiation treatment, and best outcomes.

But note that the men in this study had radiation treatment as their primary treatment--not in the salvage setting.

https://www.healingwell.com/community/default.aspx?f=35&m=4306230&g=4306889#m4306889
Posted 6/9/2023 12:12 PM (GMT 0)
Lupron/Eligard for 2 & 1/2 year first time around, during and after first radiation treatments. PCa came back. Details in my sig below.
Posted 6/12/2023 10:34 PM (GMT 0)
Melaine,
I've been on ADT for 16 months now. At my most recent Uro appointment, I was scheduled to get a 3-month Lupron shot, which would have brought me to 18 months. I have done a lot of research on how long a person should be on the ADT. I found a Canadian study which recommended between 18 and 24 months. I requested a 6-month shot, which will bring me to 21 months. At that appointment, I will meet with my Uro and he and I will decide whether to do 3 more months, which will bring me to 24 months.
As for side effects, my side effects have been fairly minimal. I get the hot flashes and night sweats, but they last only seconds. Since my 9 month shot, I have been battling the bulge, but holding my own. I exercise daily, which I believe has minimized my side effects and helped with the battle of the bulge.
My last 2 PSA tests have been < 0.06, which is considered to be undetectable.
I believe that the more weapons that I bring into this battle, the better chances I have of long-term survival. My weapons of choice are ADT, EBRT, exercise, Whole Food, Plant Based diet, research and this support forum for emotional and educational support.
Posted 6/12/2023 11:41 PM (GMT 0)
"I believe that the more weapons that I bring into this battle, the better chances I have of long-term survival. My weapons of choice are ADT, EBRT, exercise, Whole Food, Plant Based diet, research and this support forum for emotional and educational support."

that's a great attitude and plan. and a powerful message!
Posted 6/13/2023 12:49 AM (GMT 0)
“Then he said between 12 and 18 months should do it. Now, more recently, he's saying 12 months”
They really don’t know and there are certainly negative side effects of continuing.
Not taking the next shot and waiting to see how it goes is an option to consider.
Test regularly and go back on if the numbers creep up.
Maybe someone more knowledgeable can add what the negatives are.
It is a tough decision to make. Ask the MO what the pros and cons are from stopping at this time.
Posted 6/18/2023 1:23 PM (GMT 0)
Hi Melaine, I was on Lupron for 21/2 years, over 5 yrs undetectable now and living each day to the fullest!
Posted 6/22/2023 6:47 PM (GMT 0)
Has anyone been on Lupron, then stopped, and, if PSA went up, restarted Lupron? If so what was the PSA level when Lupron was restarted? How long had you been on Lupron before stopping? What was the PSA when you stopped and what was it when you restarted? In February 2023 my score was at 2.0 after being off Lupron for several months. In May I restarted Lupron . My level dropped to .08. . This month it is .10 I am still on Lupron

The doctor suggests that if I stop Lupron he would have me wait till (or if) the score goes to 10 before restarting.This is to avoid the cancer resistance. Have any of you had a similar recommendation?

If you have been cycling, how many have you had?

Thanks
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