I have been fighting PCa for 25 years, mostly with frequent treatments (SBRT) for oligometastic disease. Now my new oncologist wants me on Lupron + Xtandi -- something I am resisting.
At age 86 I think it is absurd to start on that combination and almost surely destroy my quality of life for whatever time remains. I've read that half the men on Xtandi quit it because of the severe fatigue.
Am I nuts or a fool?
So if you don't do as suggested you'll die early? LOL You are not nuts or a fool. Perhaps try 1 or 2 30 day lupron shots? Stop if you don;t like how it feels but it might do good for you. I wonder what monotherapy with another lutamide would do too. Bottom line: absolutely your choice.
Everyone reacts differently. I would at least give them a shot for a month or 2 to see how you react. If they’re too onerous you can always stop them and try something different, or try nothing at all.
congrats on your 25th anniversary! Lol
Do you mean to tell me you have never been on adt of some kind?
What is your psa now and how fast or slow is it growing? What did your latest psma scan show?
The alternative to Lupron+Xtandi is painful and crippling metastases.
" I've read that half the men on Xtandi quit it because of the severe fatigue." That is not true.
"Adverse events that led to treatment discontinuation were comparable between the enzalutamide and placebo arms (6% each)."
pmc.ncbi.nlm.nih.gov/articl...
Yeah, you know I forgot. Death from pca is about the most painful way to go. The bones start to crackle and shift around your nerves, which relay that directly to your pain centers.
The only good solution is to refuse food and water until you die. And even then, that takes too long. Especially if they decide to hydrate you.
you’re NOT nuts , in fact you’re the only person that knows how and what you want to do.
Enjoy where you are now, and by listening to your soul, you hear the echoes of truth.💜💜
I am currently on ADT and Xtandi. For me it has not been totally debilitating. I do tire more easily but I'm still able to maintain a full time job as a software developer, if that's any indication of what you can experience. You need to try it and see how you react.
You are not nuts or a fool, there was a post recently about having 10 years left to live after 75yrs for men anyway, so why bother with treatment? But you are living proof that life goes on after that. Personally if i make it to 86 I would take anything that would give me more time.
The side effect burden for the LHRH drugs, which are most bothersome to PCa patients, are largely age dependent. The older you are, the less bothersome they tend to be. Given your age, they are like to be far less bothersome than symptomatic bone mets.
Note—I've been on ADT for over 20 years and ding OK so far.
Richard W
Richard when you say ADT you mean high dose estrogen correct?
The side effect burden of ADT is overall less for older than younger men regardless of how T production is suppressed. The side effects may differ, but their severity (i.e., how bothersome they are) is basically the same whether one is on an LHRH agonist, antagonist, or had an orchiectomy. Men though may differ in terms of which specific side effects they find most bothersome.
Richard W.
I get that! I just thought you were on estrogen therapy to suppress your PCa.
The side effects of suppressing testosterone is also releived with low dose estrogen being that the T creates estrogen and estrogen is essential for bone strength, red blood cells, mental health, joint pain, energy metabolism.
I have first hand proof of this.
I broke out my Sthil magnum 660 chainsaw and Timberwolf log splitter which has been collecting dust since ADT until recently when i started on low dose 0.025mg E2 patch.
I just cut and split 3 cords of wood this last week
No more hand and elbow joint pain, no more fatigue, and im happy happy happy!
I just recently started low dose transdermal estrogen myself, after years of my medical saying h&$# no. I was sleeping 16-20 hours a day and augering in. Like you I’ve experienced recovering from my sleep state back to near full awareness and , too, like you ….my mental state upticked considerably. I am still wrestling with negative changes in my BMs tho. My bp shot up but was easy to fix … y boobs, fingernails and waist are growing / enlarging rapidly …… but I don’t care. lol. Estrogen has improved life for me considerably. I’m the kinda. Autious type and it’s only been a few weeks, it ….so far …. I’m a fan of low dose transdermal patches too.
Have a nice holiday with your loved ones,
❤️❤️❤️
Glad to hear you’re feeling energetic also! It’s a good Christmas present aint it!
All the best to you and everyone in your orbit this holiday season!
Yes sir buddy ….it is a good Christmas present. A great present .
Thank you friend, and best holiday wishes backatcha for you and your family” orbit “ too. I know there is a hefty handful of guys here , like me / us that are seriously lucky to be relatively comfy , and at home with our families …. Still hanging in there. Boy I know how grateful “ I “ am for sure. lol
Love ya guys
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Merry Christmas!
I hope your holiday is filled with comfort for hubby and your loved one/s … and the new year is good for you both as well. Big holiday ehug out to you and hubby.
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Thank you. Hubby is almost done with RT. Kids came home for Christmas, we have 3(2 daughters and son).So full house. Grandson is 2 and a half so into Christmas now and granddaughter gonna be born any second now.So we are enjoying family time, it is really nice. Thank you
most men on lupron - xtandi experience mild to moderate SEs. The combination should put your Mets asleep and make your remaining time more comfortable . If you have pain , opiates are very effective at returning you to a decent QOL .
Even if you have the most debilitating SEs possible on lupron - xtandi, like I do, there are ways to still make your life tolerable and mostly comfortable. Lupron- xtandi rescued me from the open doors of inpatient hospice …. so far it’s given me over 6 additional years of life a whole table full of specialist doctors didn’t think possible. There is nothing wrong with giving it a try first before assuming the worse. Even deep fatigue is treatable with transdermal patches in many men. It could, like me, add many additional years to your life too.
Just say’in
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Wassersug makes a great point-the older we get, the less ADT side effects we generally experience. Testosterone levels lower naturally with age, so the contrast between normal and suppressed T is lessened, and thus the side effects. And has been said, the ADT is vastly superior to the pain of bone Mets.
Take Lupron without Xtandi.
Some here have suggested a 1-2 month trial of Lupron. Perhaps a trial of Orgovyx would be better? Generally starts working faster and should you find QOL too low T recovery is faster.
You are not nuts or a fool. Your decision to do either is a morally sound decision and both are understandable. The decision not to take certain treatment for quality of life is a difficult one and I wish you the best.
Just my opinion but I would start with Casodex for one month. Halfway through get a one month Lupron injection. Monitor Psa and side effects and add abiraterone with prednisone if needed. I put off ADT because of all the reports of horrible side effects and found mine to be mild. Zero libido and mild hot flashes and fatigue. Hot flashes are nearly nonexistent now. God bless.
That seems like a very reasonable plan. At 86 maybe just the Casodex maybe enough. Worth a shot. It comes in pill form and is generic and cheap by comparison.
I am 80 in 2025 and have decided that I would give it a shot if I have a recurrence.
Just a side note. The odds for a male living to 80 are 3.3 to 6.3 %. So we are the lucky ones to get this far. My real concern now is I am not sure I want to make the leap to 90.
My dad will be 94 and still drives. His cardiologist tells him he's got another 10 years. At this point I think he's going to outlive his children.
Your dad is truly the exception. I have an aunt who is 96 but she lives her days in a nursing home. Not sure her QOL is that good.
Out living my kids is not something I would look forward to. Out living my friends has been difficult enough.
Right now my immediate goal is out living my dogs. Concern over their QOL concerns me. I estimate I need 5 to 8 years more years and nature will have solved that.
At some point you know that your kids and grandkids are on a positive path in life and you have provided for your kids and wife’s financial future and you have had a great time here on earth. No regrets nor no “I wish I could have ….”. Hopefully your dad feels the same joy.
I agree. He quite a specimen. He fills his day playing classical guitar and working on his computer. In the last two months he reconfigure an old laptop with some Linux OS just for something to do. Still does his own taxes.
He's ready to go though. But makes the most of his time.
you are old but if your health including mind, and longevity runs in your family, I say go on the drugs as the side effects are bad but your still in this side of the grass!! I see new make this same mistake in their 40 and 50’s and ALL DIED FAR TOO EARLY
If on the other hand, your ready to throw in the towel, then your right to do so, I started in this combo 6 months ago but it is not that bad- but I have had 26 years to get used to a listing kf quality kf life. Living if your able to still rock and roll is better than the alternstice!
There is NO going back if you refuse to start the newest and best meds available!!! ! Life is very short but do not hasten the end as there is nothing ahead!
LIVE LARGE MEN AND LIVE WELL!!!
see my lupron psa results.
One injection from 4.25 now < .05.
Seems no brainer. No side effects from lupron yet. Did experience heat flashes recently for a couple of nights but gone now.
A live of info for you and others just starting on ADT. “Manboobs” are often a side effect but there is another drug one can take to prevent or reduce them. I forgot the name but others can tell you the name. I developed “manboobs”, unfortunately long before anyone ever told me about the drug I could’ve taken to prevent them.
Is high dose estrogen now an option with the PATCH study results out? Would there be fewer side effects with this method?
The early publish results from the PATCH study found that the side effect burden from ADT with high dose transdermal E2 iwas indeed overall less than with drugs like Lupron; i.e., better overall quality of life.
Here is the citation. The full paper is freely available online.
Gilbert DC, Duong T, Kynaston HG, Alhasso AA, Cafferty FH, Rosen SD, Kanaga-Sundaram S, Dixit S, Laniado M, Madaan S, Collins G, Pope A, Welland A, Nankivell M, Wassersug R, Parmar MK, Langley RE, Abel PD. Quality-of-life outcomes from the Prostate Adenocarcinoma: TransCutaneous Hormones (PATCH) trial evaluating luteinising hormone-releasing hormone agonists versus transdermal oestradiol for androgen suppression in advanced prostate cancer. BJU Int. 2017 May;119(5):667-675. doi: 10.1111/bju.13687.
Richard W.
I was diagnosed at age 58 and IMMEDIATELY became old.
I have been on several androgen drugs over 18 years and Xtandi for the past 7+ years. I live as I would otherwise. Swallow at bedtime to reduce fatigue issue. Vary dose (with MO approval) determined by success by psa and scans. Always have a Plan B.
Wow! thanks for the info.
you could try orgovyx and nubeqa. Nubeqa usually has alot less side effects than xtandi but is usually very effective.
will look into Nubeqa
Shoot I've been fighting the beast for 22 years and taking Casodex and Lupron for at least 15 years. Except for some Side Effects I've made it to an age older than you. It's no big Biggie.
(note: My M.O. replaced Casodex with Nubeqa in April 2023).
Good Luck, Good Health and Good Humor.
j-o-h-n
I started ADT 6.6 years ago. Except for hot flashes and loss of libido, I had no fatigue for about four years. One thing you have to do is stay physically active. When you sit around, the fatigue is worse.
Nobody can tell you what your side effects will be ... except you. At age 63, 4+ years in, I can tell you the fatigue and brain fog from ADT is unplesant, not great, I wish I could go back to "normal" every single day ... but for me the fatigue isn't that bad. Soldier on. Give yourself the best chance at a good quality of life. If the side effects from your new therapy are truly onerous, discuss with your onclogist.
I mentioned in previous comments that I started Casodex for 30 days and after 15 days I had a one month Lupron injection. I do want to mention it knocked my sex life down from 3 to 0.😂
Man wish I’d make it to 80s ..
I went on Lupron at age 69 and am still on it at 79 (80 in a few weeks). I enjoy my life very much and am so pleased the Lupron has kept my cancer in check after radiation failed. The fatigue and hot flashes are minor irritants.
Treatment update-is SBRT missing the lesions ?
Are you on Xtandi (Enzalutamide), and reported the side effects of low sodium?
47 year old advanced 
Treatment Options for Hot Flashes
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