Metastic prostate Cancer Survivors - longevity and quality of life
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.
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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?
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?
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?
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 !!
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 .
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!
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 !
that wouldbe a very happy outcome, at 76 .
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.
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.