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.

robert570 | @robert570 | May 28, 2023
In reply to @ringmastr1 "I really am trying to keep a very positive attitude about the whole situation. The first..." + (show)
@ringmastr1

I really am trying to keep a very positive attitude about the whole situation. The first two months were mentally and emotionally rough and I do have occasions when I get extremely sad. I am trying to tell myself that I still have 30 years to live. I am retiring from my job next month at the age of 55 as I had planned to do all along. I am really going to take the opportunity to enjoy the more important things in life.

Jump to this post

That's exactly what I'm doing. Best of luck to you!

REPLY
ringmastr1 | @ringmastr1 | May 29, 2023
In reply to @melcanada "Im 78 How old are you now please How long did Xtandi work and what was..." + (show)
@melcanada

Im 78 How old are you now please

How long did Xtandi work and what was after it and again after that
My pc is in spine L1 L2 T 10 11
Where is yours/ Did it shrink? Did it stop?
Control only? Did it go to organs brain?

What should I expect

Jump to this post

I had 5 radiation treatments to my hip, L4 and sacrum. The doctor said that the bones are now healing as expected with no new cancer growth.

REPLY
melcanada | @melcanada | May 29, 2023

Will look into some of your drugs

REPLY
ringmastr1 | @ringmastr1 | May 29, 2023
In reply to @robert570 "I will be 62 this fall. and I was diagnosed at 52. I had a prosectomy..." + (show)
@robert570

I will be 62 this fall. and I was diagnosed at 52. I had a prosectomy followed with radiation. Then I had 6 rounds of chemo followed by Zytiga and prednisone for almost 4 years. After that stopped working they put me on Xtandi which didn't work too good, it sort of stabilized my PSA though it started rising after 3 months. Then came 13 rounds of Jevtana chemotherapy. Every 3 weeks from May of 22 until February of 23. PSA was stable but it slowly started to rise. I'm now on Pluvicto. I have just completed my 2nd round of 6 at 6 weeks apart. Too soon to tell if is working. During these years my PSA has been between .20 and never above 3.5 during all of these treatments. I'm on xgeva shots for my bone mets on my rib cage, middle spine and on the back of my neck. The 2 on my back were fractures which have healed nicely. Almost no pain. I get Lupron injections every six months. All I can say is that everyone is different. I have a good sense of humor and just go on like nothing has happened. Fatigue is the biggest hurdle and I can deal with that. They told me at the beginning that they were going to throw everything but the kitchen sink at me in the beginning and they weren't kidding. Hope this helps and good luck!

Jump to this post

Where are you being treated? I'm going to Phelps Hospital in Tarrytown NY. I got a second opinion at Memorial Sloan Kettering in White Plains NY and that doctor agreed with the treatment my doctor is giving me. He was also cool and said I could book appointments with him anytime if I had questions even though he's not the one who's actively treating me.

REPLY
1 reply
kujhawk1978 | @kujhawk1978 | May 29, 2023

Not quite ten years, 9 years and 4 months.

While many do die of PCa, some statistics say 27k or or so each year. thanx to clinical research, treatment options to manage PCa have exponentially increased since I was diagnosed in Jan 2014. So, for most, it may be one of managing a chronic disease, balancing quantity and quality of life.

Kevin
REPLY
2 replies
proftom2 | @proftom2 | May 29, 2023

Watchful waiting for ten years. Stage IV diagnosis year 11. After ten years of watchful waiting and 3 years of stage IV my mind shifted from how long will I live to how well will I live. I am a total quality of life guy now. Working at enjoying the minutes, hours, days, and so forth. Strangely enough, I am living the best version of myself.

REPLY
1 reply
srob805 | @srob805 | May 29, 2023
In reply to @ringmastr1 "I joined the gym on May 1 and my goal is to work out 4-6 days..." + (show)
@ringmastr1

I joined the gym on May 1 and my goal is to work out 4-6 days a week. I will be retiring at the end of June and I will have plenty of time to make the gym part of my regular schedule. I have always been considered a very naturally strong guy, though I never went to the gym before. I am pushing myself with the heavier weights to try and maintain as much muscle mass as I can for as long as possible. I also do 30 minutes on the treadmill at this time. it is amazing how much PC changes your perspective on life and motivates you! my libido dropped off very quickly once I started on the hormone therapy. I used to be incredibly active. My wife is also very understanding about this and I try to schedule sex instead of wait for one of us to be in the mood. As you all know, I don’t think I would ever be in the mood due to the hormone therapy.

Jump to this post

Don’t overdo the weights. You don’t want to break down muscle because the lack of testosterone will not let you rebuild it.Best to do a routine that keeps you toned. Don’t overdo!

REPLY
1 reply
ringmastr1 | @ringmastr1 | May 29, 2023
In reply to @srob805 "Don’t overdo the weights. You don’t want to break down muscle because the lack of testosterone..." + (show)
@srob805

Don’t overdo the weights. You don’t want to break down muscle because the lack of testosterone will not let you rebuild it.Best to do a routine that keeps you toned. Don’t overdo!

Jump to this post

Oh jeez. I didn't know about that. I guess my muscles are as big as they will ever be. I'll just maintain with the weights I can do for 10-12 reps. Thanks for the info.

REPLY
ringmastr1 | @ringmastr1 | May 29, 2023
In reply to @kujhawk1978 "Not quite ten years, 9 years and 4 months. While many do die of PCa, some..." + (show)
@kujhawk1978

Not quite ten years, 9 years and 4 months.

While many do die of PCa, some statistics say 27k or or so each year. thanx to clinical research, treatment options to manage PCa have exponentially increased since I was diagnosed in Jan 2014. So, for most, it may be one of managing a chronic disease, balancing quantity and quality of life.

Kevin

Jump to this post

Thank you for sharing the chart with your detailed journey. What do the blue dots on the bottom of the chart represent?

REPLY
kujhawk1978 | @kujhawk1978 | May 29, 2023

The blue dots are where the graph charted the PSA values, I added the data labels so I, my medical team and others can see the numeric values.

REPLY
View MoreView Less
Please sign in or register to post a reply.