1. < Prostate Cancer

Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?

Posted by ringmastr1 @ringmastr1, May 26, 2023

There is a lot of great info on this forum. I am 54 and was just diagnosed in January with metastatic Stage 4 PC. (Hip, L4, Sacrum, and a small liver lesion). My PSA has gone from 359 in January to .24 last week and I feel great! I am curious to know how many guys on this forum have been treated for more than 10 years and what your quality of life is like. It is stories like this that will give me (and others) more hope. Peace to you all!!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jksenakjr | @jksenakjr | Jan 1 10:30am
In reply to @scullrower "23 years and counting. Started at Stage 3. I have taken steps to try to end..." + (show)
@scullrower

23 years and counting. Started at Stage 3. I have taken steps to try to end my cancer once and for all so I’m going off all treatment beginning in three days. Time will tell. Best wishes and Happy New Year!

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Hope all goes well. I have been Stage 3 for 10 years, cannot get rid of the cancer, but taking Orgovyx since May 2022. No side effects for me. Staying active. Glad to see that 23 years.

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scullrower | @scullrower | Jan 1 8:13am

23 years and counting. Started at Stage 3. I have taken steps to try to end my cancer once and for all so I’m going off all treatment beginning in three days. Time will tell. Best wishes and Happy New Year!

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1 reply
eugenelapietra1 | @eugenelapietra1 | Dec 31, 2023

22 years . see my profile , done it all! This is the best I've felt in a Long time.I know I'am the exception buy you can also Be a winner. THINK LIKE A WINNER AND BELIEVE YOU CAN WIN!!!!!! Stop thinking about cancer and live. Do what you can do and don"t worry about what you can't do . stop watching the news. only deal with the good stuff that makes you happy.

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jacksgland | @jacksgland | Dec 30, 2023

Perineal prostatectomy at 54.
Undetectable PSA till recurrence at 68. Stage 4 at 76, and now 83.
Began relugolix 45 days ago. Will add xtandi.

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1 reply
melcanada | @melcanada | Dec 27, 2023
In reply to @retireddoc "If you only have a couple of mets to your bone why not do SBRT to..." + (show)
@retireddoc

If you only have a couple of mets to your bone why not do SBRT to those specific areas and avoid the chemo for a while?

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In 202 they radiated my L2 successfully taking our 1 inch Now another 1 inch is in my L1 too close as I may not walk Others in T 7 8 9 they don't want to radiate??

Thank you Maybe another drug??

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retireddoc | @retireddoc | Dec 27, 2023
In reply to @melcanada "My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0 What is the..." + (show)
@melcanada

My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0

What is the best next steps?

They want me on Chemo where I say once on the clock starts ticking
79 feel great Prostate radiated in 2017 then L2 in 2020 and Xtandi with Xgeva Jan 23 On Zolodex for 2 years

several small spots on my spine Just in the bones

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If you only have a couple of mets to your bone why not do SBRT to those specific areas and avoid the chemo for a while?

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1 reply
ringmastr1 | @ringmastr1 | Dec 27, 2023
In reply to @melcanada "My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0 What is the..." + (show)
@melcanada

My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0

What is the best next steps?

They want me on Chemo where I say once on the clock starts ticking
79 feel great Prostate radiated in 2017 then L2 in 2020 and Xtandi with Xgeva Jan 23 On Zolodex for 2 years

several small spots on my spine Just in the bones

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You really should get a second opinion to see if the doctors from different places agree on the next treatment. Wishing you peace!!!

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melcanada | @melcanada | Dec 27, 2023

My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0

What is the best next steps?

They want me on Chemo where I say once on the clock starts ticking
79 feel great Prostate radiated in 2017 then L2 in 2020 and Xtandi with Xgeva Jan 23 On Zolodex for 2 years

several small spots on my spine Just in the bones

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2 replies
ronc320403 | @ronc320403 | Dec 26, 2023

Not quite 10, starting my 8th year. Just discovered that while my prostate is clear, a couple of lymph nodes are infected. Decision of how to proceed will be made within a week or so. The responses your question has given me a lot to consider. Maybe he best advise is to have informed faith in my Doctor. After all he's given me 7 full sympton free years to date. Good health to all.

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edmond1971 | @edmond1971 | Dec 24, 2023
In reply to @retireddoc "There really was no discussion on the anti androgen receptor medication. Darolutamide has only relatively recently..." + (show)
@retireddoc

There really was no discussion on the anti androgen receptor medication. Darolutamide has only relatively recently become available for treatment of castration sensitive disease. My understanding is Darolutamide was the best option. I know it doesn't cross the blood brain barrier so has less side effects. I had none while taking it. Quite expensive, although my insurance covered it. He only kept me on it for 3 months while I underwent chemo. I completely trust my oncologist so I told him to treat me as he felt appropriate to give me the best chance of cure or long term remission. I also only had 4 cycles of Taxotere. His belief is that it is not proven that more cycles are beneficial and it does have significant potential side effects. Also, treats at a lower dose than some-max of 60mg/m2 rather than 75mg.
I'm sure this is the individual oncologist"s choice so I am not indicating what medications or dosage are right or wrong. It also may have been tailored to my specific situation. Honestly, being a physician and knowing how complicated the disease and treatments are, I am surprised that some layman believe they can read some literature and direct their treatment. That is not to say they shouldn't be informed. Good luck.

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Thank you. I try to be mildly informed and equally trusting in my team. I appreciate your concise and easy to digest information. Be well

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