I’m thinking about stopping lupron, I have been on lupron continuously since 2016. My T is <3, I would like to feel a little more human. I will keep taking xtandi. At my age of 73, I didn’t think my T well come back very much. Any thoughts will be appreciated.
Et
If you don't think your T will come back enough to make a difference in how you feel, what is the point? Xtandi without ADT does not work as well as Xtandi with ADT.
prostatecancer.news/2023/05...
Thanks TA, that makes perfectly good since. Having thought about that.
Seems reasonable to try mono therapy for a while and watch your PSA. Bound to make you feel much better. Quality of life isse.
Just a thought, if someone has been on lupron for 8 year there’s a good chance his T will not return (maybe not at all). So obviously he will not get any relief from having no T but he could try stopping the lupron just so there is one less drug in his body and monitor T to make sure it stays as low as when on lupron. Save an injection, a drug in your body and some money (for Medicare). Does that sound reasonable? I had an orchiectomy so doesn’t apply to me, just curious.
Yes, I've known patients who no longer had to bother with Lupron. In one case, it was a bodybuilder who no longer produced his own testosterone after years of taking an injectable.
Doesn't Xtandi alone work better than Lupron alone--or am I recalling that incorrectly?
Of course, he's already on both.
I am experiencing arteriosclerosis due to prolonged use of Lupron. I suggested stopping Lupron to my PCP. He simply said. “Do you want to live or die?”.
Well crap. But you've been at this long enough I kinda think you knew that was comin. Sucks.
Can you start treatments for arteriosclerosis. Yea I know. More drugs but ?
Actually it came out of left field. My PCP put me on a drug, Repatha. I inject myself every other week. Some number in my blood came down. The cardiologist wants another test done and is battling it out with insurance. Once that test is done, the cardiologist will know what path to take to treat me.
Repatha really is a wonder drug for my wife. She has11 stents and has struggled to keep her numbers low because side effects from the standard treatments, However, after a month they lipids all went in the right direction and have stayed there. She is off all her meds with no side effects from Repatha. Her interventional cardiologist takes it for himself. It may be in my future as my numbers are heading in the wrong direction after starting Eligard and Xtandi.
Then ask him about orchiectomy and watch him squirm. Male doctors can literally freak out at the mention, but it is a very valid alternative to Lupron. See my reply with a link to a MaleCare video where it is discussed (scroll down and you'll see the video thumbnail). Of course, that would exchange one cost for a procedure with an injection for the rest of your life...
I think T coming back is different for everyone because the treatment is different. My T after 19 months of lupron and Zytiga starting in July of 18 made it back to 350 for a month or 2 before heading down for the last year to 150. Nobody knows why and I have not supplemented it. I want to really bad.
Yes, you deserve a better QoL. Have you considered taking supplemental T (gel or paste) for a trial period of time, while you continue to monitor PSA?
Intermitent ADT îs a well-studied strategy that works in many men.
You also might want to Google Bipolar Androgen Therapy (BAT).
Bob in New Mexico.
As per my Urologist, he has patients on Xtandi as a mono therapy and are doing well. He also said these are patients that are non metastatic. I myself am metastatic on Eligard and Erleada and this conversation came up as I was stating my case about dropping Eligard in December ( not Erleada ) which will conclude 5 years. His recommendation is to stay the course. I’m coming up on my 5th CT and Bone scan. The last 4 results were 0 PSA, <10 T Level and NED. I’m concerned about what Eligard will do to my body after 8, 10 or 12 years.
You could look into BAT therepy. Dr Denmeade at John Hopkins has had a lot of success with it.
While on Lupron and Erleada, my testosterone got to a low of 7. After 2 consecutive years of no tumors on scans, I temporarily stopped Lupron and my testosterone has come up to about 150. Last Lupron injection was July 2023 and testosterone started rising in about April 2024.
I definitely feel better but not what I think I used to feel like. (It's hard to remember exactly.) Before ADT therapy, testosterone was 400.
This was at the advice of my oncologist so do nothing without consulting them.
Lupron is best...... where else can you get to show your butt to a nice looking female nurse every three months?
Good Luck, Good Health and Good Humor.
j-o-h-n
Butt ……?.??? Just got my next 6mo Lupron last week and my nurse made me drop my pajama bottoms and started on my butt ….. but …. Then made me pull up my pajama bottoms and put on a mask, and implanted it in my upper arm fat ( maybe coughing a Little ). Dunno what that means, just say’in.
❤️❤️❤️
my last few lupron injections now in my arm like a flu shot …easier
I get it in the stomach from an average looking nurse🥱
I get mine in the arm. I’m not showing the nurses my but for free.😂😂
You've got that backwards..... you have to pay them to see your butt...
Good Luck, Good Health and Good Humor.
j-o-h-n
don’t break up a winning team
I solved that problem the old fashioned way: orchiectomy! Since the boys are useless now and unlikely to recover why not get rid of them and have them replaced with lookalikes.? I am so happy and my QOL is so much better (much to the confusion of most of my doctors). Although some doctors are cool with it. Check out Darryl's 3 year old interview with Kelvin Moses MD, of Vanderbilt University -- just skip ahead to 10:44 for the discussion: youtu.be/RiFnusSsaBc?si=Wrq...
Useless? Painted red white and blue....sitting on your fireplace they could instantly display your patriotism.
Good Luck, Good Health and Good Humor.
j-o-h-n
I have discussed this with my urologist who said he would do it but dislikes it because they are healthy and not damaged. I’ll decide soon in order to have it done late winter.
Ask him how long you will be on Lupron if you don't get the orchiectomy. Then ask how long it takes on Lupron for testes to atrophy. That way you can weigh the cost and side effects of long term use of Lupron versus an equally effective treatment that avoids the chemical side effects and costs.
Again, just my 2 ¢
I already discussed these issues with him. The majority of side effects are from no testosterone. It really doesn’t matter to him if you are suggesting he would want to keep me on lupron for the money he would get by giving me an injection because I get the injections from the oncologist. I fully trust this guy. The two topics causing my consideration are, sensitivity to the testicles and the fact that he has no idea if the drug could be affecting other glands or organs. He was honest about that and said to his knowledge no studies were done. One of the things that has to be considered is if I could be a BAT candidate if I have an orchiectomy. I doubt it would affect that but I need to be sure. He was at JH for several years before coming to Pa. and still has connections there because he still teaches at JHU one day a week. Thanks for the response, God bless.
Oh, sorry, costs I was referring to were cost to you.
Side effects I had from Lupron included kind of a brain fog that didn't make thinking difficult but I seemed to be concentrating fully to keep going -- hard to describe and might have been the Xtandi.
But I did have huge mood swings for 2 weeks leading up to my Lupron shots and they steadily got more intense the longer I was on it. After 7 years I was very glad to be rid of that!
I stopped Xtandi at the same time (PSA rising above 2.0) so I can't be sure the mental clarity and being at peace came from stopping which drug.
I would encourage you to look for the video clip I posted to this thread for Dr Brown's take on it.
age 77. One year of lupron snd xtandi ended 12/31/23. T undetectable until june. Now at 248. Psa detectable now ar 0.05 undetectable through july1. Will likely restart low dose xtandi. Good luck
Of course all our responses are just anecdotal but I might as well add mine. I have been on intermittent Lupron (only) since my RP failed to get all the cancer 16 years ago. I’m on Lupron for six months then off for six months and my testosterone recovers to about 700. I’ve been waiting until my psa reaches 1.5 then I go back on Lupron, which works out to about six months on/six months off. And yes I do very much enjoy my Lupron-free six months and regained stamina and strength…and libido
Lupron plus Xtandi Vs lupron plus xtandi plus chemo - survival ? 
Firmagon versus Lupron
Xtandi added with Lupron 
lupron flare up
