Metastic prostate Cancer Survivors - longevity and quality of life

Posted by ringmastr1 @ringmastr1, Feb 26, 2023

I was just diagnosed at the beginning of January and of course the news hit me hard. I have found a lot of hope in the discussions within this group. I am curious to know how long ago people in this group were diagnosed with metastatic prostate cancer and what your quality of life is like. Right now I have no symptoms from the cancer itself other than weight loss (which I am actively monitoring and dealing with via extra eating) and I have no side effects from the medications the doctors are prescribing. I know that I am at the beginning of this journey and I hope that my current status stays the way it is for many years. We all need to have hope, and I am learning a lot about traditional and new Treatment options.

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

@solidwater

Not yet I have not got ten that far into it. From reading up on the Erleada there is a good amount of time left. I haven't discussed it yet but I get a pretty good clue by reading up on the expectaions provided by the Erleada manufacturer. . I also wonder what radiation does to the picture. It has to contribute to something ' good ' in the overall outcome.
Once all these , stop working my idea may be to accept it . At this age it would be a full life. It would remain to be seen.

Jump to this post

I did the radiation treatment for my prostate cancer at REED city Cancer Clinic in Michigan. After that procedure was done over several weeks I found out that the treatment had an adverse effect on my rectal muscle which is still a life changing issue for me ever after 8 years living with the rectal issue. I don’t have the control of my bowels when I sense I have to go. I better be close to a bathroom or I’m in trouble. I need to always be close to a bathroom now. I wouldn’t wish this on anyone! I’ll be 80 this year and the issue is very confining. What can I do to eliminate this issue. Should I look for compensation even though it’s been 8 years. Or can it be fixed?

REPLY

I was first diagnosed at age 46 with prostate cancer & Gleason score 9. Was treated in Toronto with HIFU, three years later PC was back, had prostate removed. Surgeon couldn’t remove everything due to scar tissue from HIFU. Three years later the cancer returned and had 40 days of radiation. Two years after radiation I was diagnosed with chronic mylogenous leukemia, in remission, Tasigna twice daily. December 2021 the PC returned, PSA doubling every two months. I have no insurance and am not undergoing any treatment.

I am wondering about how long will this take to kill me?

REPLY

Would be helpful to know age on these posts. I am 83, got diagnosis last fall. Gleason 9 with some on rib and left hip. Eliguard took testosterone from 480 to 10 and PSA from 33 to .4 Did Xtandi for 30 days and now am on Abiraterone, 1000mg daily with 5mg Prednisone. Only noticeable side effects are hot flashes and arthritis seems worse. Before the PSMA scan, my urologist told me that I was not a candidate for surgery (over 75) because of my age. I am in good health and was taking no medications other than finasteride for BPH. Is this age cutoff for surgery some kind of standard?

REPLY
@hairbrain

I was first diagnosed at age 46 with prostate cancer & Gleason score 9. Was treated in Toronto with HIFU, three years later PC was back, had prostate removed. Surgeon couldn’t remove everything due to scar tissue from HIFU. Three years later the cancer returned and had 40 days of radiation. Two years after radiation I was diagnosed with chronic mylogenous leukemia, in remission, Tasigna twice daily. December 2021 the PC returned, PSA doubling every two months. I have no insurance and am not undergoing any treatment.

I am wondering about how long will this take to kill me?

Jump to this post

Wish I knew what to say to that, However, if possible, can you get into a program , most drug manufacturers have an option to get needed meds to us who are not able to affort the crazy costs. I would concentrate of getting the PSA down. Try getting ahold of some meds that seem to have an advanced action called Erleada. Stay with it, I would definitley advance the idea of following up , again with the radiologist !!

REPLY
@rrosberg1

Would be helpful to know age on these posts. I am 83, got diagnosis last fall. Gleason 9 with some on rib and left hip. Eliguard took testosterone from 480 to 10 and PSA from 33 to .4 Did Xtandi for 30 days and now am on Abiraterone, 1000mg daily with 5mg Prednisone. Only noticeable side effects are hot flashes and arthritis seems worse. Before the PSMA scan, my urologist told me that I was not a candidate for surgery (over 75) because of my age. I am in good health and was taking no medications other than finasteride for BPH. Is this age cutoff for surgery some kind of standard?

Jump to this post

It depends on your physical fitness. I know that makes a differance . I'd seriously look into radiology ,it has come a long wayand most of it is safe, you have to make ann effoert toconnect witha provider who has done it a lot. I just went through a course in radiation at 76 .

REPLY
@solidwater

hi Thanks for the information. I never thought of that . Would be terrific to be rid of lupron,,,,terrible stuff . May I ask if there was any change in body mass etc. I would think we may be able to increase muscle mass after , or does the same effect from lupron prevail ?

Jump to this post

Unfortunately, the net effect on body mass is probably the same as being on Lupron. I am 83 years old, and I’ve been able to maintain my body mass pretty much the same over the past couple of years I exercise a lot, as much as my body will let me do in an effort to maintain some degree of muscle mass, however, age doesn’t help, so being 83 works against me as does negligible testosterone levels from the orchiectomy.
It’s interesting, my PSA levels have not fluctuated up nearly as much after the orchiectomy as they did when I was on Lupron. Not sure what accounts for that but my oncologist felt pretty good about it. After my last PSA, he decided to put off other treatment options for a couple of months, pending another bone, scan, and CT imaging. Anyway, whatever the good Lord decides to give me, I will take!

REPLY
@rxharleydude

Unfortunately, the net effect on body mass is probably the same as being on Lupron. I am 83 years old, and I’ve been able to maintain my body mass pretty much the same over the past couple of years I exercise a lot, as much as my body will let me do in an effort to maintain some degree of muscle mass, however, age doesn’t help, so being 83 works against me as does negligible testosterone levels from the orchiectomy.
It’s interesting, my PSA levels have not fluctuated up nearly as much after the orchiectomy as they did when I was on Lupron. Not sure what accounts for that but my oncologist felt pretty good about it. After my last PSA, he decided to put off other treatment options for a couple of months, pending another bone, scan, and CT imaging. Anyway, whatever the good Lord decides to give me, I will take!

Jump to this post

very interesting,,,yes after I wrote my first comment realized what you are saying, in that there likely would be a trade off. Yoy realized an unintentional benefit . In my excersize routine I have discovered the same trend. Shucks !

REPLY
@hbp

Me 76, was on lupron and Erleada for 13 months. It sapped my energy but otherwise was not too bad. I understand that lupron denies the cancer most food and Erleada traps the cancer food that evades the lupron. I hope that this procedures works for both of us and we can get another 10 years!

Jump to this post

that wouldbe a very happy outcome, at 76 .

REPLY

I wonder what the general trend looks like for Erleada / lupron . A friend has been doing it and has no side effect complaints. Any input would be welcome.

REPLY

I did Lupron and Erleada for 6 months, had RP and then another 6 months of lupron and Erleada. Gleason 9, Grade 5, rated 3 C on cancer scale, advanced, aggressive CR for this 76 year old. The treatment has not been pleasant but manageable and I am hopeful for several more years, maybe a cure, but that would be a long shot. I have faith in my doctors at UCLA and I listen to their suggestions and usually take them. Good Luck to all of us.

REPLY
Please sign in or register to post a reply.