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

Dr Kennith Pienta

Chemotherapy, hormone and radiotherapy

90% cure

John hopkins

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

Russ

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.

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.

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.

There really was no discussion on the anti androgen receptor medication. Darolutamide has only relatively recently become available for treatment of castration sensitive disease. My understanding is Darolutamide was the best option. I know it doesn't cross the blood brain barrier so has less side effects. I had none while taking it. Quite expensive, although my insurance covered it. He only kept me on it for 3 months while I underwent chemo. I completely trust my oncologist so I told him to treat me as he felt appropriate to give me the best chance of cure or long term remission. I also only had 4 cycles of Taxotere. His belief is that it is not proven that more cycles are beneficial and it does have significant potential side effects. Also, treats at a lower dose than some-max of 60mg/m2 rather than 75mg.
I'm sure this is the individual oncologist"s choice so I am not indicating what medications or dosage are right or wrong. It also may have been tailored to my specific situation. Honestly, being a physician and knowing how complicated the disease and treatments are, I am surprised that some layman believe they can read some literature and direct their treatment. That is not to say they shouldn't be informed. Good luck.

Thank you. I try to be mildly informed and equally trusting in my team. I appreciate your concise and easy to digest information. Be well

Not quite 10, starting my 8th year. Just discovered that while my prostate is clear, a couple of lymph nodes are infected. Decision of how to proceed will be made within a week or so. The responses your question has given me a lot to consider. Maybe he best advise is to have informed faith in my Doctor. After all he's given me 7 full sympton free years to date. Good health to all.

My Xtandi has failed after 8 months PSA rising to 6.5 from 1.0

What is the best next steps?

They want me on Chemo where I say once on the clock starts ticking
79 feel great Prostate radiated in 2017 then L2 in 2020 and Xtandi with Xgeva Jan 23 On Zolodex for 2 years

several small spots on my spine Just in the bones

You really should get a second opinion to see if the doctors from different places agree on the next treatment. Wishing you peace!!!