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Stopping Lupron after 1 year?

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Posted 6/4/2019 2:45 PM (GMT 0)
I am going to ask my Doctors tomorrow if I can stop the Lupron treatment early. I have had 2 shots so far that last 6 months each and am scheduled to have two more for a total of 2 years on it. I started on it last Sept. about 9 months ago. Are two years really necessary or is it overkill? I hate not having testosterone! And now I am getting a bit of mild depression as well. Anyone please, your thoughts and experiences.
Posted 6/4/2019 4:16 PM (GMT 0)
There is no question that Lupron sucks. I feel you on that.
With that said, you have a fairly aggressive case, and i would want to treat it aggessively. If i recall, there are studies that show that 18 months is as good as 2 years. Others will chime in on that i'm sure. But i would at least want to go 18 months before stopping.
Posted 6/4/2019 4:32 PM (GMT 0)
CJS10, I've had 2 six month shots and don't plan to get a third. My URO advised against it but he gets $4k a shot so there may be some incentive there to push shots. I had the whole trifecta done though, RALP Radiation and Lupron. It's my understanding that PSA numbers will be low while on Lupron so I don't know if thats a good benchmark or not. My last 2 PSAs were undetectable, I get re-checked July 1.
With a gleason 9 I would probably be more cautious but I'm not even close to being a medical professional so I can only tell you my experience.
Some of the guys are able to live with the Lupron SEs but I've had a hard time especially with the fatigue. My SEs seem to get worse as I approach the 6 month mark. I was ready to quit after the first shot but the folks here convinced me otherwise. There's a lot of knowledge and experience in these pages.
Posted 6/4/2019 5:31 PM (GMT 0)
no one likes Lupron and everyone wants to quit at some point. I know I did. this is your chance to beat cancer. it's your call.
Posted 6/4/2019 6:14 PM (GMT 0)
My husband made the choice to stop the lupron earlier than originally planned as well. Also Gleason 9, lower PSA than you though, but high volume cancer in the prostate. His RO supported the choice and acknowledged that he wasn't tolerating it well. I wouldn't make a recommendation one way or the other, it's such a personal thing.
Posted 6/4/2019 6:30 PM (GMT 0)
CJS10... If you want to read experiences check out the ADT & SRT Journey thread, there's lots and lots of stories and experiences with ADT. As far as advice only speaking from my experience it will have to be a decision that you and your medical team make. With that being said if I was in your shoes I would go at least 18 months there's been lots of studies supporting this length. Gleason 9 is nothing to mess around with so a few extra months would be a little extra insurance. But like I say that's why it is important to have a good team so you can pick a good treatment plan. Us guys here on the forum can offer our advice but none of us are doctors so choose carefully. Wishing you the best in whatever decision you make.

Larry
Posted 6/4/2019 6:32 PM (GMT 0)
I was originally scheduled for 2 yrs with G9 high volume. My PSA was only 3,42 at Dx. Treatment was IMRT + Docetaxel. I decided along with my MO that 18 months was enough. There are studies that 18 months is as good as 2 yrs. It has taken me 1 1/2 yrs for my T to rise above 100 and for me to start to feel closer to normal.
It's your call. Just stating my experience.
Posted 6/4/2019 6:47 PM (GMT 0)
For starters you don’t have to “ask” your doctor - it’s your choice. Just saying. Maybe a compromise would be to do a three month shot, see how you do, and then go from there.
Posted 6/5/2019 4:39 PM (GMT 0)
Spoke with my radiologist today and he agreed that new data shows that 18 months is probably enough. Will talk with my oncologist asap and see what he says. This is like "You bet your life" vs Sex!
Posted 6/7/2019 2:37 AM (GMT 0)

CJS10 said...
Spoke with my radiologist today and he agreed that new data shows that 18 months is probably enough. Will talk with my oncologist asap and see what he says. This is like "You bet your life" vs Sex!


Am I missing something? What’s the rush to talk asap about ending 6 months early 9 months from now? Your undetectable PSA on ADT is the expected result, nice to see but not meaningful. Also T recovery isn’t a light switch on/off/on after ADT, read some T recovery length of time posts here. I’m on my third and final Lupron shot 16 months total, I have hated it, no mirrors allowed ;). My thinking was I had one initial shot at a cure, best big punch for me up front, no regrets.
Posted 6/7/2019 10:22 AM (GMT 0)
Thanks Cointosses, I guess the rush to talk about ending Lupron is hope. Hope that genital shrinkage and low energy and and no sex will end sooner rather than later. I am reading current research that 18 months of Lupron is just as effective as 36 months and so by inference as effective as 24 months. My radiologist agreed with this when we spoke yesterday. He said 18 months is enough. Of course the PSA at that time, nine months from now will dictate any decisions.
Posted 6/7/2019 4:10 PM (GMT 0)

CJS10 said...
Thanks Cointosses, I guess the rush to talk about ending Lupron is hope. Hope that genital shrinkage and low energy and and no sex will end sooner rather than later. I am reading current research that 18 months of Lupron is just as effective as 36 months and so by inference as effective as 24 months. My radiologist agreed with this when we spoke yesterday. He said 18 months is enough. Of course the PSA at that time, nine months from now will dictate any decisions.


I get it, as all on ADT do. Look at the bright side, hot showers don’t create as much of a drop. Got to have a sense of humor rolling with this PC carnival ride. Interesting for me when RT ended I had some anxiety because that’s it for a cure, second guessing the surgery vs RT decision etc. Now with my last shot, starting sometime the end of the year the PSA bounce waiting game begins. Good luck!
Posted 6/7/2019 4:21 PM (GMT 0)

CJS10 said...
I am reading current research that 18 months of Lupron is just as effective as 36 months and so by inference as effective as 24 months. My radiologist agreed with this when we spoke yesterday. He said 18 months is enough. Of course the PSA at that time, nine months from now will dictate any decisions.

Nine months from now your PSA will still be very low!

As a side note, my RO also lowered the ADT period from 24 to 18 months based upon that Canadian study that people are referring to. I did not complain...

Post Edited (Sr Sailor) : 6/7/2019 10:24:21 AM (GMT-6)

Posted 6/7/2019 4:27 PM (GMT 0)
CJS10 -- good luck to you man. one thing I will say is you and your doctors took a wise course on treatment. and for everyone here's to 18 becoming the new 36 smile
Posted 6/7/2019 7:52 PM (GMT 0)
Prayers for the best decision for you , I can t agree more that Lupron sucks! it s just so hard to see my formerly very strong husband get weaker, and now he s freezing all the time and has boobs. He has days where he stays in bed all day. well, that said, it s keeping the PSA undetectable so far that's the bright side so it s worth it ! But , it s a personal decision and I wish you well with yours
Posted 6/8/2019 10:35 AM (GMT 0)
Thanks all for the replies and your personal stories. Makes me feel so not alone! Saw my urologist yesterday and he is still wary of the 18 month Lupron, wary but not against it. Says the studies come and go and the next one may say 24 months is better.
I also discussed the Trimix solution with him. We scheduled an office visit to try out the dosage. next month though. No matter, my long time partner stayed with me though thick and thin but departed as friends when the cancer came. She was near a sex addict and just couldn't handle it. I am dating again and feeling really good about myself now that I know that I will likely be able to perform again...…..
Posted 6/11/2019 3:07 PM (GMT 0)
Been there done that and opinions varied way back then as well.
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