Longest living person with PC - Advanced Prostate...

Advanced Prostate Cancer

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Longest living person with PC

jackdrum profile image
23 Replies

I'm curious as who is the longest known survivor of PC.

My Radical prostate removal was June 26, 1990, and I am still fighting this monster,

After the surgery, my PSA was undetectable for 12 years and then started climbing. I had 43 radiation of the prostate bed in 2005. I went on the wait, and watch until 2015 when my psa was climbing. and test showed the cancer spread to one of my ribs, and bladder.

I again had radiation on the rib, and later found out they had burned one of my lungs. My cancer has now also started in my right arm between the elbow, and shoulder. I will not take any more radiation, unless they get proton radiation here before it is to late;

I am now on Hormone treatment of Eligard for the cancer, and the hormone treatment as caused my bone to go bad, and now I am also taking Prolia to try to build up my bones.

I am now 87 yo and able to live a restrictive life, but not in good condition. I have survive 30 plus years and wondering how many others have lived longer with Prostate Cancer.

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jackdrum profile image
jackdrum
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23 Replies
SPEEDYX profile image
SPEEDYX

I don't know who its but I think you are in the running...Fight On Brother!!

Shooter1 profile image
Shooter1

That sounds like what they promised me but with prostate removed PSA jumped 10 points in next six weeks....spider web of nerves and veins had spread it far and wide. Now working on 4th year of the war.

in reply to Shooter1

🏋🏽‍♂️

Tall_Allen profile image
Tall_Allen

Inspirational! I'm keeping your post!

Tall_Allen profile image
Tall_Allen

Did you have PSAs at the beginning? Was Nerve-sparing RP available to you back then?

I agree with you that zapping metastases at this point is a waste of time, even with protons.

jackdrum profile image
jackdrum in reply to Tall_Allen

Best I remember right now, my psa was 7, and It was suppose to of been Nerve sparing surgery, but it didn't work out that way.

Fightinghard profile image
Fightinghard in reply to jackdrum

Keep up the fight Jack. Good luck. Your story gives us all encouragement.

Tall_Allen profile image
Tall_Allen in reply to jackdrum

It was in the early days for both. PSA wasn't widely used for detection until the early 1990s. Patrick Walsh did the first nerve-sparing prostatectomy in 1982, so no one had a lot of experience doing it back then. We've come a long way since then. You are part of our history.

Amazing endurance Jack drum ! I’m 59 with five years in undetectable ..I’m on prolia due to osteopenia ,been on adt this entire run . How long have you been on the prolia? I’ve got rashes I attribute to the prolia . Has the prolia helped you in anyway ? I think that it has helped my joint pain ? I fear long term it could be bad ?. Any ideas ? I crown you “King “ with respect dear Sir . 30 years and counting is a testament to survival . 😷

jackdrum profile image
jackdrum in reply to

I was 56 when I was dxed with PC and had my surgery. I'm sorry, but I have only been on Prolia for 2 weeks and I haven't really seen much in the side effects except maybe some of the skin change issues

in reply to jackdrum

Thanks Jack for the prompt reply . We ‘re just about at dinner time here in Prescott . Good luck with the prolia . The osteopenia and djd related pain are my main bitch right . I really have no room for complaining . I do pray that I can live some years without the return . You inspire us . Thank you . 🌵

MateoBeach profile image
MateoBeach in reply to

Prolia is good for the long haul, Whimpy. Stronger bones that are less hospitable to new mets. Would add celecoxib 2 per day (400 mg) is what I do, as it may synergize similar what it does with Zometa. Just keep up with your dental care and hygiene as I’m sure you do. Dem bones dem bones!💪💪💪🌵🙏🏻

in reply to MateoBeach

Some say that once you start it ,you shouldnt stop it.. or suffer fractures due to stopping . ?. That’s my fear .I have skin allergies to it . Ashes on my inner biceps under arms and worst is the inner thighs .. very itchy at night ...They fade in and out . I take a Zyrtec and the rashes dry . They return randomly . Thankfully ,I ve had no bone involvement or mets beyond the pelvis ..?. My joints are fading and creaking .. It’s my main issue right now . I’m getting a new dexa scan read to me next mo visit . I Don’t know whether to stay the coarse or halt prolia . My MO first said that I’d only have 4 six month shots I’m due for the forth next visit .. ?...? My natural friends say drop it .???

Cant stop now! 👏👏👏💪

erjlg3 profile image
erjlg3

Lg was diagnosed November 2003. He's been undetectable since around 2012. About 17 years.

in reply to erjlg3

That’s remarkable . ❤️❤️❤️

Twoofus profile image
Twoofus

My vote is Jack. Absolutely fantastic.

noahware profile image
noahware

I believe psychiatrist Paul Steinberg (author of "A Salamander's Tale") is still alive, and he had his RP in 1984. But even though he was diagnosed before you, he was only 35 then, so about 70 now.

For those interested, he would seem to be the poster boy for the possible success of iADT, which he began with (Canadian) Nick Bruchovsky in 1992 in Vancouver. At 43, he wanted to preserve some sexual function AND beat back the cancer.

(His book can be found "like new" on ebay or Amazon for eight bucks)

jackdrum profile image
jackdrum in reply to noahware

I tried looking up Paul Steinberg and the following link shows that he passed in 1999. sorry to see that he is gone. scribd.com/book/396697464/A... If you google the address I just posted it will show you the page I was talking about.

noahware profile image
noahware in reply to jackdrum

It appears that "about the author" section pulled up the bio of the wrong Paul. He wrote the book in 2015, and I found a Linked-In page that makes it appear he is alive (and hopefully well) and living in DC:linkedin.com/in/paulsteinberg1

Dr. Steinberg would probably be amused to see that rumors of his death have been greatly exaggerated!

Best to you, and have a wonderful holiday. I have to admit I was never fully optimistic about making it to 87 even without PC, but I do seem to have some good longevity genes on at least one side of the family!

jackdrum profile image
jackdrum

I was dXed of PC in May of 1990 and head my surgery on June 26 of 1990

MateoBeach profile image
MateoBeach

Congratulations on 30 years survivorship. That has been my goal post since diagnosis. Not quite halfway there yet but in no hurry either! Live long in fullness. 🙏🏻

CharlieBC profile image
CharlieBC

Little known fact: Methuselah had it, but didn't discuss it much

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