My journey so far

[Gecrellin]

It has been 3 years since my diagnosis. Beginning PSA was 843 and Gleason was 4+5. Began with Lupron and Casodex. PSA declined to 78, but began rising again shortly. Tried degerilix briefly without success, then shifted to Zytiga for sever months. Progression slowed and PSA stabilized around 270. Moved on the Xtandi which worked awhile, but progression resumed in May 2015, so we moved on to docetaxel. Only side effect was low white blood cell count during first cycle. That was resolved by addition of Neulasta. After 10 cycles took a break for over 3 months (probably too long). First pain in lower back began in February, controlled with Advil. Restarted docetaxel last week since I reacted so well, but we will reevaluate after 3 cycles. Considering 3 next steps. Current PSA is 1467, but as my doctor says that is only a number to be considered in conjunction with how I feel and what scans show. I practice qigong several times a week, remain active and have a positive attitude in the face of these challenges.

[JoelT]

Gecrellin,

Keep up the positive attitude and the exercise, it does help.

What are the three next steps you are considering? As a side thought your PSA never really went down very low with the ADT drugs, did you ever have a testosterone test to see if you were actually castrate?

Joel

[Gecrellin in reply to JoelT]

T hasn't been tested for a couple of years. It dropped to a low of 0.2, and stabilized at 0.3-0.4. Dr. Was satisfied. That we had achieved the castrate goal.

[Hidden in reply to Gecrellin]

What's the unit of measure for T. I am used to seeing numbers like 500 being normal, and 50 being old time castrate with 20 being the new target level.

"zero point two" I cant relate to.

[Gecrellin]

Just had my second docetaxel infusion this go round. PSA has jumped to 2251, but doc isn't concerned yet since back pain has subsided and lymph tumors may be marginally smaller. We will scan again at the end of cycle 3 to see where we really stand. I'm lucky to have neither nausea or fatigue from the chemo, and no adverse effects from the Neulasta.

[Hidden]

garden variety = not neuro endocrine

University of iowa got $10M "spore" money to study neuro endocrine. They are trying to do some targeted therapy - sort of of like radium 223 - targeting I think somatastatin, but its alpha ray not beta, but they are the ones to watch at this point. i think. They are trying a treatment used in Europe.

[Gecrellin in reply to Hidden]

Liver biopsy stain showed about 20% neuroendocrine, but for now doc is more concerned about PSA jump.

[Hidden in reply to Gecrellin]

You wont die from too much PSA.

[Gecrellin in reply to Hidden]

Yes, doc usually says it's just a number, but he was concerned about the magnitude of the current jump in the face of so many chemo treatments and no T

[Hidden in reply to Gecrellin]

1450 ten months ago. 2250 nine months ago.

50% increase in one month. He can't think that that reflects the growth of the cancer in that time. Maybe that sleeping cells are waking up? Maybe new blood vessels into the prostate? ...

[George71]

Hello Gecrellin,

I was reading your history and was interested in hearing an update on your condition please