Connect
← Return to Metastic prostate Cancer Survivors - longevity and quality of life
Discussion
Metastic prostate Cancer Survivors - longevity and quality of life
Prostate Cancer | Last Active: Sep 1, 2023 | Replies (124)Comment receiving replies
I was diagnosed at age 50 stage 4(a) PCA. Gleason 4+3=7.
Surgery with a few positive nodes and recurrence of PSA. Lupron with good control but eventually CAD due to lupron otherwise tolerated well.
Bony Mets after 10 or more years: enzalutamide with terrible side effects; provenge with no effect; zoladex, denosumab and eventually docetaxel chemo and local radiation to sacral nerve Mets due to horrific pelvic pain, and Radium 223.
I’m 70 and alive after 20 yrs stage 4 disease.
Pelvic pain is debilitating and I’ve had multiple failed nerve blocks(pudendal and ganglia impar nerve ablations) and left with no other options other than methadone which does have some neuropathic benefit that other opioids do not.
I will start lutetium 177-pluvicto- when available.
The good news is I’ve survived 20+ years with stage 4 disease with many non painful bony metastases but no other visceral Mets.
We can never know the future/prognosis of this disease and as challenging as it is-overwhelmingly for me as I’ve shared only part of my extremely complicated medical history- there is always a next step in treatment even as I’ve been told there are no further options for me.
I’m on med cannabis with little benefit but I am seeking an eventual psychedelic guided session.
Replies to "I was diagnosed at age 50 stage 4(a) PCA. Gleason 4+3=7. Surgery with a few positive..."
Your comments have a lot of information and your success gives me so much hope! When I was diagnosed 3 months ago, I immediately felt like I only had weeks or months to live. The oncologist then told me that he expected to be seeing me for many years. He doesn't like to give timelines but he told me it would be more than 5 years. Those statements helped my anxiety and terror. Your stories about your treatment and your 20 year journey give me so much hope! My PC is in my abdominal lymph nodes, sacrum, and L5. I'm on Abiratone, Prednisone, and Lupron. Had my first of 6 radiation treatments on my sacrum and L5 today. 6 consecutive days. Hopefully that will stabilize the bones and prevent pain/other issues. Thanks again!
Connect
Hi your story is immense. The fact that you made i thus far is enlightening. am 76 recently diagnosed and having gone through radion and a year of lupron and casodrx am moving on to erleada. I a ma life long fitnes athlete and hope that helps. My bestregards for you andthe struggle withthis terrible disease