Here's my story: I was diagnosed in April 2016 when I was 70 years old. I had gotten up to play golf and noticed blood in my urine. Primary care doctor thought it was a UTI. It wasn't. He ran a PSA test. It was 14.7 and he sent me to a Urologist who immediately saw me when I was unable to pee. At first exam he felt the tumor. Gave me Lupron, a catheter and scheduled a biopsy. Tumor comprised 95% of prostate and 15-16 samples. Gleason 9. Tumor had broken through the outer capsule of the prostate and had one swollen lymph node near by. Had a thermos cooling procedure to shrink prostate and allowed my to pee without the catheter . Had a HIFU procedure in December 2016 to blow up the tumor and by January 2017 my PSA was 0.2. In July 2017 PSA was up to 2.7 and the tumor returned. Went through 45 sessions of external beam radiation. Tumor gone and PSA undetectable. April 2018, noticed a lump on my outer chest wall and it turned out to be a "tumor of prostate origin" even though my PSA was still undetectable. Six sessions of Taxotere and the tumor was nearly gone. Still PSA undetectable. December 2018 the tumor returned along with a large cancerous lymph node behind my collar bone. Still no PSA. Now on Xtandi, Zometa, and have been on Lupron since 2016. Just finished Provenge. PSA still undetectable. Oncologist has been throwing "everything" at it. This doesn't even take into account the three TURPs to clean out my urethra. Last week had a check up and we seem to have things "under control." Only side effect is hot flashes. When I mentioned it to doctor he gave me a WTF look as if to say "really. I play golf twice a week, lift weights three times a week and walk all the time. It has been a rough three years and I don't know what tomorrow will bring but for now things are great.
New Here: Here's my story: I was... - Advanced Prostate...
New Here
Thanks. I have not had NEPca test but will look into it.
I’d add Celebrex for sure. Pretty safe and when combined with Zometa reduced deaths 22%
Clearly, you have one of those weird tumor types that don't put out much PSA, but it is thankfully responsive to hormone therapy and traditional chemotherapy. It sounds like they did an IHC analysis on your chest wall tumor - anything remarkable in the report? Lacking the PSA biomarker, you just have to have frequent bone scans/CTs to check for progression. Does bone alkaline phosphatase increase? You have to workaround the fact that you can't use PSA as a marker of progression.
Sounds like you're doing ok. My suggestion would be to keep up your vitamin D3 level. A doctor told me cancer patients have low D3 levels, I should have mine checked. I did and I have been taking 1000 i.u.'s daily. There are other supplements you could be taking but that is up to you.
BTW Nalakrats is in great shape.... and an ex Bronx boy.......
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 07/10/2019 10:49 PM DST
Hello RayTrevitt,
Can you explain how this works? I've never heard of it:
"Had a thermos cooling procedure to shrink prostate and allowed my to pee without the catheter . "
Thanks, and best to you!
RayF, it's called a "thermal cooling" procedure. Please excuse my spelling in original posting. One probe inserted anally to keep area surrounding the prostate cool while another is inserted into prostate to heat it. It takes about 30 minutes and is administered in the urologist's office. It is uncomfortable but it works. It was covered by Medicare and my Blue Shield supplement. I had a Foley catheter but after two weeks it was removed and I could urinate normally.
RayF, here is a link urologix.com/patients/coole...
Thanks for the info Ray!
Hi ..readng your journey, it must have not been easy. I have been under treatment for PCa since Nov with Lucrin, zometa and Zytiga. My PSA dropped to 0.41. Will be taking the recommendation from the oncologist to proceed with docetaxel ( Taxotere) treatment with ADT to improve my survival rate. How was your experience with Taxotere?
Hi bellyhappy58, I have to admit that taxotere wasn't easy. the steroids they gave me before and after infusion gave me insomnia and hiccups for hours on end. I also had benedryl, some drug to keep me from being nauseous and an antacid all through iv. I had no nausea, or acid reflux. After the first infusion I was given a shot of neulasta and three days later I was in ER with bp of 160 over 130 and a pulse rate of 160. It lasted for about six hours. My oncologist attributed it to the neulasta shot. Thereafter I got it through the patch which was better but still caused a lot of bone pain. As to the taxotere itself, the first 3-4 days itself weren't bad then fatigue set in and I lost my appetite. Fortunately, my wife forced me to eat even though I didn't want to and almost everything tasted bad. Oddly, the only thing that I wanted to eat was cheese enchiladas, rice and beans. I drank bottles of a product called Ice. It is basically flavored water. After about 8 or 9 days I started to feel better and began walking. Unfortunately, since I was never fully recovered before I had the next infusion, I continued to get weaker and weaker. It took a long time for me to feel normal again. Oh and I lost 90% of my hair at the two week mark of my first infusion. I had to renew my drivers license during treatment and now have a picture as a constant reminder of what I went through. Many people have better experiences and I am sure some had worse. Good luck.
Right treatment path? 
After RP had a PSA of 1.7. Went for a ga-PSMA scan wondering what’s next?
Blood work before radiation and elevated liver enzymes
Still here today
PSMA scan results 
