By way of introduction...

[Aviator1]

8/2016: PSA 2.6, 90% involvement and escaped capsule (Gleason 4+3), RP at Emory/Atlanta, 2 of 9 removed lymph nodes hot; 7/2018: PSA rise to 0.04, Casodex + 6 mo Lupon shot, IMRT (35 treatments); 5/2020 PSA <0.01, intense back pain took me to the ER, CT/PET scans showed on L1 spinal lesion deemed PC by needle biopsy, 4 other spots, 2 confirmed (pelvic lymph node, right rib) 2 suspicious. L1 lesion treated with 10 radiation sessions for pain relief. Started 3-mo Lupron/Xtandi therapy. Progress PET scheduled October 2020. Genetic testing identified PIK3CA as probably driver. 100% UI/ED. This is high risk disease with distant metastisis and unresponsive PSA indicator, meaning almost total reliance on imaging. I'm not happy with the five-year stats.

[Tall_Allen]

There are some clinical trials that may be useful. It sounds like you have low PSA and low androgen receptor (was that found on your biopsy?). Did the biopsy show PSMA avidity? Maybe there is enough tissue to do those IHC stains if they were not done before.

[Aviator1 in reply to Tall_Allen]

Cannot answer your question. Biopsy was 4-½ years ago.

[Tall_Allen in reply to Aviator1]

You had the genetic testing 4 ½ years ago? Maybe it's time to have a new biopsy of a metastasis - things change.

[Aviator1 in reply to Tall_Allen]

Initial prostate biopsy was 2016. Needle biopsy of the metastatic L1 lesion was last month.

[Tall_Allen in reply to Aviator1]

I was talking about your metastasis biopsy, not your prostate biopsy.

[Hidden]

We can’t live by stats! They told me I’d be gone by now. I’m happy the stats were wrong on my case. I think if you can kick this can down the road a bit that new things will be coming down the pike for us Guys. I did imrt and double adt . 5 years now and still rolling. I wish you to beat any odds and the stats as well. I live pretty close to your horseshoe picture.

[Aviator1 in reply to Hidden]

My strategy as well, although my experience with the docs and percentages, as hopeful as they are professionally oriented to think, is bad - urinary control, ED, recurrence. Still thinking positive

[j-o-h-n]

Greeting Aviator1, First let me echo Whimpy's post about stats.... You can't live by stats and there is some many new meds to beat those little Mothers nowadays.... You'll be around for many years unless your 98 years old right now. Now here goes my spiel.

Would you give us more data about yourself. Age (not 98)? Location? Location treatment center(s)? Doctor's name(s)'? and finally are flying right now? BTW all info is voluntary but it helps us help you and helps us too. Thank you!!! If you respond it may be a good idea to add that data to your home page, for you use and for member's use.

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Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/21/2020 7:29 PM DST

[Aviator1 in reply to j-o-h-n]

Age 75, excellent physical condition (if a few pounds heavy), original surgery Emory Atlanta - Martin Sanda, IMRT Glenwood Springs Colorado Peter Rossi (formerly Emory), medonc Emory Stephen Szabo. Negative on the flying, my greatest loss

[j-o-h-n in reply to Aviator1]

Thank you for your quick and detailed response. Too bad about flying but maybe buy a drone and fly that instead (good for peeking in on your neighbors). Stay well and keep posting here this is a great site for information and camaraderie.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/22/2020 11:16 AM DST

[Hidden]

What does you Medical Oncologist say? First question I asked in 2004 with Mets and my first Lupron injection, Doc if you were me, what would you do? Consequently my treatment was chemotherapy with Lupron. Good luck and kill the little bastards.

BTW, the numbers in 2004 by all published journals, I had 2-4, maybe five years......l

GD

[Aviator1]

Recommended treatment is systemic due to distant sites, lymph node involvement, high risk designation. Currently on Lupron (3-month intervals) and Xtandi. Immunotherapy discussed. No mention of chemo...yet. Rare lack of PSA means Reliance on imaging with long intervals between scans and not knowing. Beyond the hormone side effects and fatigue from the Xtandi, I feel good and carry on a fairly normal routine.

[pjung33]

does your doctor recommend monthly Xgeva for your bone?

[Aviator1]

Exactly. I get a monthly shot of Xgeva