The Gleason 9 and 10 Crew - Welcome and how ya doin'? (Part 4, continued thread)

Thanks John. The PSA was 146 at his 50 yr old physical, then 4 days later they retested and it was 89. They sent us to a urologist at that point. A week later, after biopsy they drew another psa it was 109, and 3 days later on day of PSMA pet scan it was 129. That’s when they started him on Zytiga and orgovyx. So while psa is jumping around a bit it is still very high. His testosterone has also jumped around a bit, was 125 when psa was 109 and then 3 days later they redrew it and it was 275 (when psa was 129). He has never taken testosterone injections.

We have been told his case falls into the very high risk category (highest category) and the rapid increase from 2 to 146 in 30 months has us concerned. While “triple therapy” isn’t standard of care we have been advised by Dr Kwon at Mayo to add chemo now since husband started hormone meds 4 weeks ago. Problem is Dr Kwon doesn’t prescribe it and all the local oncologists say they won’t either because my husband isn’t considered high volume metastatic. We are scared and we have young kids and husband wants to see them grow up obviously. Need to hear success stories from other Gleason 10s but also input on how you got that success. To say this is shocking is an understatement

Steph&Eric - You may get a better response if you create a new post that will be read by everyone.

Dr Kwon is aggressive and probably what you need. A conservative approach would not be what I would want with his results. Go see a cancer center not affiliated with the others.

Hi everyone,

I’m about to received diagnoses in this grading, don’t ask me how i know please. Did anyone else feel back pain, pins and needles in legs, and thigh and random pain across the back/chest before diagnosis? This has been getting worse for 2 weeks and 0 symptoms before that, so metastisis to bones, etc.

Thank you.