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