21 years on Lupron without a break . Saved my life since 1999.

[ShenStone]

I can only share my experiences with Continuous ADT for 21 years with , no breaks . Stage IV metastatic PSA 30 . Six mo the to live. 1999x yup another Century. Side effects all the usual with depression, muscle degradation total impotence and lack of desire for life. But I was alive and I intended to stay that way. Currently a candidate at DUKE. For the newest approach and RNA technology. Will not get off of Lupron until I get my cancer under control.

Look up dry ejaculation. With a vibrator I can experience a longer and more intense orgasm than the old days. my Lady just is happy that I get excited when I am with her and we can overcome simple biology.

Think long term, full quality of life and how you can give back now. All my best!

[Cooolone]

Wow! Awesome and congratulations!!! Keep on Truckin!!!

You definitely are skewing the statistics, hahaha

[Tall_Allen]

I am so glad you wrote in. It's a testament to how long one can live with it. Duke is badass! What is their RNA treatment?

[6357axbz in reply to Tall_Allen]

Would be nice if they could identify the unique characteristics of PCa that can remain castrate sensitive for extended periods of time. Would be great news to know you were in that group.

[Spyder54]

Wow Shen Stone ! 21 years on ADT? I did not know that was possible. Question: have you seen big fluctuations in PSA over time? Any other addition of vitamin or mineral that you have added with result?

Golf club in hand. Serious inspiration. You are a specimen. See you have PSA hovering around 1 last 6 yrs from a previous post. Thanks for sharing. Mike

[Hidden]

Its great to see stories of hope.

[timotur]

Congrats Shen-- that has to be a record. In essence, you've beat Stg IV PCa. Best wishes for continued success in the trial.

[6357axbz]

👍

[LearnAll]

Congratulations to Mr ShenStone for facing side effects of Lupron for this length of time.Could this man have done done equally well with just Bicalutamide monotherapy ? Could this man would have done equally well with Intermittent ADT ?

Is there a randomized control trial to prove that without Lupron this particular man would have done worse. (if he chose different treatment)

There are men I have known who have lived 12 to 15 years ONLY with Lupron. And there are men who die within 2 years with a combo of Lupron, Zytiga and multiple types of Chemotherapy.

So what this all mean? It means every man's prostate cancer is unique and one size (SOC) does not fit all. The correct way is to taylor make the treatment for each man based on characteristics of his unique PCa features.

[HopingForTheBest1 in reply to LearnAll]

That is also why genetic testing is important to consider.

[Karmaji in reply to LearnAll]

what r those markers....That is sure APC path is unique for each human.....

I do not think genes give any clear indications

[LearnAll in reply to Karmaji]

You have to take an assortment of markers and then take a composite view to correctly assess aggressivity of your prostate cancer....First, presence or absence of family history, Presence or absence of germline mutations like BRCA 2,ATM etc, Age younger than 55 vs older than 55. Pretreatment level of ALP,LDH, Hb, Ca, NLR,PLR,LMR etc. Gleason grade 7 or less vs 8 or higher. Type of mets..Bone only or Bone Plus Visceral.....Extent and speed of fall of PSA in first year of ADT, Lowest level of T achieved in first year of ADT, Presence or absence of elevated NE markers like Chromogranin A , Neuron specific Enolase ...pre treatment performance status. presence and extent of comorbid medical condition....and so on.

It is a complex process to put all this data together and come up with categories like least aggressive, average aggressive, highly aggressive and extremely aggressive.

This is in nutshell.. but if I go in detail..it will take at least 20 pages to explain this subject.

[Wings-of-Eagles in reply to LearnAll]

LearnAll. Excellent points in your post. I was wondering some of the same things. Wings

[tallguy2]

A fantastic report! Thanks for sharing!

[johnps30]

Amazing post. Thanks for sharing your optimism - a good outlook is the secret sauce too. Great smile on your face and glad your lady is happy too!

[Boywonder56]

I bow to you.....im pushing 5yrs....and ready to takea bullet.....guess i'll putdown the berratta and pick up a vibrator......😳

[Hidden in reply to Boywonder56]

😂

[monte1111 in reply to Boywonder56]

I could use that Beretta. Vibrator, not so much.

[rosatt1]

Your story gives me hope. I am Stage 1V, PSA 21 Gleason 9. I have been on Firmagon and Zoladex ADT. Congratulations.

[London441]

That’s what I’m talking about! Gentlemen pay special attention here! ShenStone is not saying it’s been easy, but he’s a man of no complaints.

Sure, this could happen with or without any or all of the drugs. Yet without question, the fact that he’s maintained body, mind and spirit to this degree on Lupron is truly a inspiration.

Still gunning to get off of it too! All this and having good sex, and you know he’s at least 40😀.

Someday clinical trials will prove what a positive attitude, hard work and investing in your relationship can do to fight disease. Until then we have this.

[monte1111 in reply to London441]

I think it's the golf. I need to learn how to afford golf.

[Pancake_Lefse]

What an incredible story that provides inspiration and hope. Not an easy journey by any stretch of the imagination, however if taken day by day (I imagine sometimes second by second), a journey that is indeed bearable and living a life you enjoy.

I’m so happy to read your post and to read the honest frustration/struggles, but more importantly, the joy in your words.

Glad you’re here.

[GreenStreet]

Wow. Thanks for sharing. Inspirational but also honest description as to how hard it has been at times. Thanks and best wishes

[Boywonder56 in reply to GreenStreet]

How hard......theres a laffer.....😂

[GreenStreet in reply to Boywonder56]

Lol

[Sherpa111]

You are and inspiration, sir! Curious about the Duke RNA program? Andy insights? Would love to here more. I am 3 years in on ADT (Lupron, Zytiga and prednisone) PSA negligee and typically hovers around 0.02 to 0.06.

[diamondrn]

That's my plan, ShenStone, to stay on it as long as it works.

I am 77 now, so I am not likely to last as long as you have, but I plan to push it to the limit.

Thank you for sharing. Continued Blessings.

[Fiddler2004]

Just took one month off of the Lupron after two years straight, back this Thursday, I agree , it has saved my life too (+1/2 dose Xtandi daily) Stage IV Mets to bones, PSA was 2400+, now hovers between .1 and .06. Congratulations, hope to follow in your footsteps ( and thanks for the Duke heads up )

[Boywonder56 in reply to Fiddler2004]

Did your psa go up?

[Fiddler2004 in reply to Boywonder56]

I'll know tomorrow my 1st blood draw since the 30 day break, I've only missed once due to the pandemic, it rose from .06 to .24, scary but then dropped back to .06 after two months and stayed there through the end of 2021. This year things have been bouncing about a bit but mostly zeros to the right of the decimal, last reading 0.09... I'll take it. Stay Tuned , thanks for responding.

[Boywonder56 in reply to Fiddler2004]

Read your bio...wouldnt poke the bear too much....evrytime i ask for shore leave from lady lupron.....all i get is stay the course....g9 ductal w mets....still have prostrate....so...obla dee .....

[jbskiatook]

Great story and a great lesson for anyone starting on on the prostate cancer road. I have been been doing that for 10 years and expect to get another 10 with what is avaliable today. I did have a penial implant and that made our relationship so much better and dependable. Early memories fill the void. Congraduations

[Jeremiad53 in reply to jbskiatook]

I can get an erection, but when excited I urinate....that doesn't go over very well I can tell you

[jbskiatook in reply to Jeremiad53]

I understand that as that is what happened with me also and fear of urine was a killer . Erections were good the first 7 years but became so undependable, probably due to the urine problem, length of time of the erection then I just had to have the implant.

[larry_dammit]

You should be our poster boy 😄😄😄. What a great story. I’m going to finish my 5 years in a few days. Keep up the great work there warrior 🙏🙏🙏

[jbskiatook in reply to larry_dammit]

😀

[Sandy752]

Shen: You have posted here 4 times -- once after 17 years on ADT and now after 21 years. You have never replied to any of the many replies you have received requesting your medical history. Having been on ADT for more than 7 years, I for one would love to read it. Thanks.

[barrybayarea]

Thanks for sharing. Gives us all hope

[Mattj3rd]

Thank you for sharing this and your experience. Just getting ready to start Lupron at 71 - after 21 years with prostate cancer - congratulations and again thanks -

[Hidden]

Whoa nelly! You are king! I’m at six yrs on adt now. Wow. You give hope to us! Thank you !

[leo2634]

Thanks for sharing your story with us. I'm on Eligard, Zytiga four years no break. It is definitely a lifestyle changer but key word there is "Life " Never give up Never surrender. Leo

[6357axbz]

Shen, how much alcohol do you consume?

[monte1111 in reply to 6357axbz]

Forget about how much. What brand?

[Nous]

awesome ShenSone ! ... thanks for the inspriration ! ... best wishes ... Nous

[monte1111]

I have to do this for 17 more years?

[Boywonder56 in reply to monte1111]

Really......😩

[Hidden in reply to monte1111]

I was thinking the same thing: Now I can look forward to 17 more years of ADT! But then, that would also mean that I'm alive

[monte1111 in reply to Hidden]

A few more years of this and I won't be able to count to 17.

[ChiShow]

Better to be above ground and live with Lupron/Zytiga if it continues to take you to not so pleasant episodes. I am in since November 2020 - PSA 33 in 2015 - radical and salvage rd 8 months after. RO is an aggresive follow up doc that wants to find where it continues to lurk. 11mm Biopsy was positive in lower rt lung in November 2020 - latest CT scan (June 2021) with contrast it is no longer there! Still undetectable at this point and I continue to keep running with hopes PCa will remain ADT sensitive for a whole many years to come!

[raoulmaher]

Excellent attitude !

[Wings-of-Eagles]

Awesome testimony my Brother! An Amazing inspiration from an amazing Man. Heck, 9 years in for me, although on Lupron vacation and Zytiga/Prednisone, Hoping to hear back from you with news on the RNA trial at Duke. Take care all the best, keep the faithWings aka Dan in So Cal

P.S. Nice looking legs for an old guy! Yu got more muscles there than me! lol

How's your golf game? No worrys, It's not the score that matters, it's that you have already scored a great victory!

[Beermaker]

Way to go, Shen! I will be back in a couple of months to celebrate 10 years - I hope

[lewicki]

Great post. Came at a good time as I have been feeling down. Keep on trucking.