Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?

Thank you for sharing your health situation and treatment options. When the medical team was selecting an androgen receptor inhibitor, was there discussion about darolutamide versus enzalutamide, and why they chose the former?

I am currently on Leuprolide (Eligard) and Abiraterone (Zytiga) and my next course of action if/when the PSA rises is to introduce a "...mide" and my health team was learning towards enzalutamide, so I welcome any information you can share if that was considered/discounted as an option.

Wishing you and everyone a feeling of hope and positive outlook.

I had RP for G9 a little over a year ago. No initial sign of metastasis. 6 months later a single met to T8 treated at Emory successfully with SBRT. 4 months after that rapidly doubling PSA up to 4.6 with another PSMA PET showing positive node in the pelvis. Time for systemic therapy. I did exhaustive research and talked with numerous colleagues. Came across an article by Diane Reyes NP and Ken Pienta on TET (Total Eradication Therapy). Sounded like what I wanted. Contacted them through email and got rapid response. Had a zoom consultation within a week. Very impressed. Look up his/her credentials and peer reviewed publications on prostate cancer and its treatment. Started treatment almost immediately. Diane Reyes was/is wonderful and very efficient, responsive and thorough. Within 3 months I had chemo with Taxotere, Lupron, Darolutamide and 8 weeks later full pelvic radiation. My PSA became undetectable after 2nd chemo treatment and remains so a year later. I am now off all medication including Lupron.
I am very impressed with both Dr. Pienta and MS. Reyes. I feel as though they are treating my case individually rather than a set protocol. The field of treatment for oligo metastatic prostate cancer is evolving so rapidly that by the time Phase 3 trials are published and protocols become Standard of Care they may be behind the curve. I am certainly not out of the woods. I am not, nor likely will be, cured. But hopefully I can turn my disease into something more akin to a chronic illness and play whack a mole in the future.
I am certain there are many excellent, knowledgeable prostate cancer physicians at medical centers around the country. Finding one that fits you and having faith in their treatment is important. I wish everyone well in their journey.

Russ

I put it together and keep it updated.

It's useful when my medical team and I discuss treatment decisions, especially when new team members come on board.

As an example, new oncologist talked about SBRT combined with 24 months of Orgovyx and Xtandi as an attempt at a cure. We went over my chart together and he said, ok, no, let's manage this as a chronic disease with treatments for defined periods, criteria to stop, actively monitor while off treatment and criteria to go back on..

Exactly I said, it's clear from my clinical history looking at this chart that we are unlikely to cure it. His response, yeah, seeing your clinical history in a single chart makes it clear.

Hi Kevin, that is quite a chart! Did you put that together or is that a standard chart maintained by your care team?

Russ

Dr Kennith Pienta

Chemotherapy, hormone and radiotherapy

90% cure

John hopkins

precious blood of Jesus heal my cancer in my spine

2017 had prostate radiated. 2020 had L2 radiated 1 inch out and back on Zolodex that stops testosterone the fertilizer of cancer Get on Zolodex shots
Jan 2023 PSA went up to 9.8 and several small spots on T 10 to T 9 and another 1 inch on L1 this time Put on Xtandi and PSA dropped to 1.7 and Xgeva plus vitamins C and D and gummy apple cyder vinegar for white blood cells
Xtandi Enzalutamide has slowly stopped working as PSA now 6,5 In Jan 24 they are looking at Chemo for me 8 sets 3 weeks apart. Looking also at Clinical Trial of 177 LU at PMH Princess Margaret but its random so I could just get Chemo that I can do near by CVH Credit Valley H
Oncologist said lots of options so just stay fit, positive and I pray daily
79 and feel fine Off to Sandals in Jamaica again for New Years Just got back Nov 28th
Get on Zolodex, Xgeva and others and only chemo as advised Quality of life is important Stats of 30% make it 5 years are based on 2010 to 2018 data Lots of new treatment plans since then not included in stats Get restaged with todays latest stuff.

Yes But time Radiation to L1 lumbar in 2020 Else Zolodex then Xtandi Jan 23 with Xgeva C only in spinal bones Feel great but tired a lot now

Fist time chemo will be 24 Prostate radiated out 2017 Mar

Maybe I should find another drug Suggestions welcome

Hi, is it only hormone therapy keeping it at bay for 8 years & is the January chemo your first in all this time?

Pray for you!!!!