Anyone have Prostate Cancer Stage 4 with good results?

I was diagnosed with stage 4 cancer in Dec, 2014. I was fortunate to have Dr. Igor Franks do my prostatectomy. I transferred to Dr. Eugene Kwon several years later. Both drs referred me to a radiology oncologist, medical oncologist, endocrinologist - what in their experience they felt I needed. Dr. Kwon has listened when I brought up something I had heard or read about. There are so many different routes to take and I feel Dr. Kwon has treated me as an individual - not another patient on a conveyor belt.

It's a tricky balance with doctors. My former radiation oncologist was a well-known researcher (he'd appear in the national news sometimes talking about new cancer treatments like Erleada), but his people skills were a bit distant. My current RO is younger and less experienced, but also very communicative and still up on the latest research.

The talented orthopedic surgeon who had to leave his warm bed in the wee hours and make a long, dark drive in to the hospital to perform 10 hours of emergency surgery on my spine is a rare beast who has both: given that my thoracic spine is largely cement and metal rods now, his operation was surprisingly effective and I can sometimes even forget the surgery happened (at least for a while).

But he also is a kind, approachable man who visited my hospital bed frequently in person in the weeks after my surgery instead of sending a resident or intern for the majority of visits (as most star surgeons would), listened patiently without seeming like he needed to rush away, and always wore a medical cap with a fish bone graphic on it. He even told me that the tumour "felt like prostate cancer" right after the surgery, a couple of days before the biopsy came in and confirmed it. 😮

So you are still on Nubeqa But not Lupron? I’m still on both of them after having chemo therapy and would like to get off, but I didn’t know you could do Nubeqa without Lupron?

That is interesting. I am stage 4b (spin, ribs, pelvis, and femurs). I have 10 radiation treatment to my spin and 5 to the ribs to shrink the tumors. They put me Eligard injections every 3 months and Nubeqa 600mg daily. I had 10 chemo treatments and I would have done 12 if my doctor would have allowed it and I get Xgeva injections every 6 weeks. But I remain on Eligard (ADT) injections every 3 months.

I was diagnosed July 27th, 2022 and I am still undetectable. My Alkaline Phosphate was through the roof when I was diagnosed. It was somewhere in the 170's. It remains super low for now - 35, 36, or 37. So right now my doctor evaluates my PSA, my over blood work, and Alkaline Phosphate to track my progress.

I'm living my life as normal as possible. I work 12-14 hours per day. I am a consultant in the computer field and I have several contracts. I spend a lot of time with my family. I'm a grandfather now. Both of my children are married and live in the area, so we spend a lot of time together.

I started getting back into my hobby of playing Jazz Guitar. It took over a year to recover from 10 chemo's. In some ways I still do not think I have fully recovered.

I have a friend that has been in this same fight for almost 9 years. He was diagnosed with stage 4 cancer to the lymph nodes. His PSA recently started climbing and he was treated with targeted radiation to the problem area. PSA is now declining - so I am hoping they killed what came back on him.

If we respond to the treatments men, we can live a very long time with this disease. I pray we all do. I am still hoping for new treatments and a cure.

Thank you Jesus.

Hello, fellow stage-4b tech consultant and guitarist. I got extra radiation instead of chemo (my PCa is oligometastatic), but the spinal compression left me unable to sit up at all for the first few months, and then not for more than a few minutes in a useful position for classical guitar.

Fortunately, my core strength recovered enough for me to practice for playing at my daughter's wedding 10 months after diagnosis and the start of treatment. ♥️

I know at least 5 people that come to weekly Ancan.org advanced prostate cancer online meetings that have gone with just Nubeqa. Include me, though I have been on Lupron and Orgovyx for eight years, so my testosterone is never coming back.

If you have been undetectable for 18 months to 2 years you should approach your doctor about dropping Lupron? no studies have shown that it works well alone, but enzalutamide has been approved for standalone use.

Great to hear you are undetectable. When you have a lot of bone mets they can use radium 223 to try and eliminate them. There is also Pluvicto which in some people can dramatically eliminate mets all over the body.

So,,,,,if your PSA starts rising you have those two options to extend life.

That is so cool you played at your daughters wedding. My daughter's wedding was this past April and I hired a pianist and singer and my son and I played the guitar on the song she walked down the aisle. We played I see the light from Disney's Tangled. The pianist and his wife did the singing and vocal duet. It was amazing. Glad to hear you are playing again. For me, it took a long time for my chops to come back good enough to want to even try.

I was diagnosed De Novo high volume unfortunately, with a PSA of 28 and or 32.

Radium 223 is unfortunately only approved for Castrate Resistant Prostate Cancer. Same with Pluvicto. Although, I believe there is a study going on in Australia that is giving Pluvicto as an up front treatment with ADT and an ARSI instead of chemo.

For those of us with high volume bone mets, it is beyond me why insurance does not allow a short coarse of clean up treatment with Radium 223 to wipe out the bone mets.

If/when your current treatment fails, and your PSA starts rising, you will be castrate resistant. So at that point you can do those treatments.

Hopefully the treatment you have now will last for many years.