New to this, but have followed for a year

[Raylin]

Thank all of you for the things I have learned and the inspiration over the last year. I was diagnosed in March of 2018 at the the age of 56. I had been doing the watch and wait routing since 2012 when I had a PSA spike of 6.5. My pas then dropped to the 1.6 to 3.0 range for 4 years then Bam. It shot up to 380 with extensive bone mets in less that a year. and still to this day no doctor can feel any lumps in my prostate.

I got myself to MD Anderson where I have endured Lupron. 6 rounds of Taxotere, and now I am on this cynical trial

mdanderson.org/patients-fam...

This trial to designed to see if two already approved drugs (Abiraterone Acetate and Apalutamide) can be used in combination and what will the results be.

My PSA has dropped to 4.0 and holding but I want better results. Am I doing the right thing? I can tell you that my quality of life is for shit energy wise. Every day I go to bed earlier and wake up later. This is very hard for me as I have always been Mr. Gung ho 100% 24/7.

[Tall_Allen]

The DYNAMO trial is among the best out there for a maximally aggressive approach, and MD Anderson is top notch.

[Tinker1081 in reply to Tall_Allen]

How does dynamo work? Thanks

[Tall_Allen in reply to Tinker1081]

This explains it:

clinicaltrials.gov/ct2/show...

[Raylin in reply to Tall_Allen]

Thanks Tall Allen. You have taught me something about the trial I am on. Much appreciated. Also I am comforted buy your words about MD Anderson considering you are an Icon and on this board.

[MarkBC]

I found it interesting how your PSA jumped quickly and the doctors couldn't find lumps on your prostate. I had a similar experience. I was diagnosed in July during a reserve force military physical exam. I am 55 and relatively fit and healthy. I had some difficulty with urination prior to this year's physical. The doctor found my prostate enlarged and ordered a PSA test. I had never had one before. It came back at 103. Biopsy concluded Gleason 9. Scans found numerous mets in bones and lymph nodes.

I had military physical exams every two years and passed each one easily. They always included a prostate DRE. I asked my urologist how I could have gone from a clear prostate exam to Stage 4 within two years? He said there was no obvious lump or hard spot on my prostate but he could feel there was something not quite right with my entire prostate. He could tell because he had done thousands of DREs and was a specialist. A general practitioner doing my previous physical exams may not have had the experience to pick up the subtle differences. He also thought my cancer was what he called a "wildcat" cancer that was aggressive and grew quickly.

Fortunately ADT and chemo has my PSA holding at 0.3. Hopefully it stays this low for a while. Best of luck to you.

[Raylin in reply to MarkBC]

Mark, The other thing that the doctors find unusual about my case is that to this day i can pee like a teenager and sleep all night. I think I have a wildcat also.

[MarkBC in reply to Raylin]

I wish. Between getting up to pee 4 times each night and the ADT hot flashes, I haven't had a solid night's sleep since last spring.

[j-o-h-n]

DRE = Don't Rely on Exam. Not every doctor knows what they're feeling when they finger you. Go for blood test... etc.

An ounce of prevention is worth a pound of cure...I learned that the hard way....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/30/2019 5:59 PM EST