Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?
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!!!
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2018 rad 40 days then Zolodex
2020 stage 4 put back on Zolodex after L2 radiated 1,5 inc cancer out
Jan 2023 L1 and T 10 T 11 so put on Xtandi or Enzalutamide and PSA dropped from 9.8 to 1,7 in a month added Xgeva for bones 1200mg Calcium daily
Prayer helps I feel great back issues don't allow for long walks without sitting L1 would noot be radiateed as to close to L2 with 1.5 inc cancer
78 and they say this should give me 5 years even if Xtandi stops working there are other remedies to control never cure Just like diabetic control it
Thanks for your feedback! Hope you enjoy the holiday weekend.
My case similar 47 years old, diagnosed June 2022 with varios metastasis, done decetaxel + nubeqa + eligard and I will start xgeva for the bones soon
So far feeling great, very much active at @100% except for sexual desire that is to the floor…. Other than that in super good shape
I’m also curious who’s been more years into this journey
54 is young for joining the club, so I'm thinking positive thoughts for your long-term good health. An important part of your self-education journey (which needs to occur continuously) is to make sure that any information about life expectancy is always reviewed in context to the age (median, average), the definition of metastatic spread, and the overall health of the participants. Rarely do I find all that information available.
I'm 52 and had my prostate removed at 42, and things were fine until last summer when my PSA skyrocketed and now I'm on Eligard/Zytiga for the past six months and my PSA is at undetectable levels. My metastatic spread is limited to 10+ lymph nodes in my iliac region, and while that isn't something that brings joy, it is very different then having it spread into the bones or organs. I also have a small lesion on my liver but the PSMAPET showed no uptake, so we discounted it. My oncologist doesn't give any guidance beyond 10 years but he puts me in the category of 10+ years.
Do you research and you will be informed, confident, and able to live a positive long life.
I was diagnosed with stage 4 bone metastatic prostate cancer over 21 years ago. I started Lupron soon thereafter. I had hot flashes for about 5 years and then they began to dissipate. I completely lost my sex drive almost 1 year after diagnosis. My wife has been the one to suffer this loss. Hormone deprivation therapy makes you stop thinking about sex, and any attempt to engage is met with disinterest. Thankfully, my wife has stayed with me. There is far more to a relationship than sex.
My PSA is about.04 and holding. I have lost a great deal of muscle mass because I have over done a handful of exhausting projects over the years. But I continue to exercise; although, at low resistance levels. I believe that exercise is keeping me alive. Life is good and I’m not close to checking out!
I've been Stage 4, prostate
cancer and metastatic bone cancer for 10 years this fall. I'm on pluvicto now. They've had me on everything. One thing I've avoided was anyone telling me how much time do you have left. I don't want to know and will never ask. All I know is I will die with it and not from it. Humor and life goes on. I eat what I want and go where I please. Attitude has a lot to do with it. The future is mine!
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.
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.
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
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!