Update on my disease: <0.1 PSA today

[bezen]

I haven't posted anything since my first post last October. Today is a good day for an update as I just finished radiation therapy and got my latest test result showing a <0.1 PSA! This is down from a high of 345 in early October. My initial biopsy confirmed Gleason 9 (4+5) in two cores and all cores positive. So last October things looked pretty scary for a while.

A lot has happened in the last 8 months:

- clean CT, MRI, Bone and Axumin PET scans

- RALP surgery performed Thanksgiving week at Johns Hopkins

- post-surgery PSA 0.5 confirmed in two additional tests

- pathology report confirmed biopsy, showed pT3B, N1 disease, positive margins at bladder neck, 1 of 16 lymph nodes positive; seminal vesicle involvement.

- started ADT in April with Eligard, Bicalutamide (30 days). Added Zytiga and prednisone early-May. Long term ADT 2 to 3 years planned.

- image-guided IMRT, 38 treatments, started April, finished June 18.

That brings us to today. I feel extremely lucky to have such a good result at this point. I think my care at Johns Hopkins and locally has been outstanding. I don't want to be on ADT for 2+ years, but Johns Hopkins is hoping all this will be curative, so will stay the course. Side effects of the SRT and ADT are what you would expect: lots of hot flashes, mild incontinence, total impotence, occasional light-headedness / dizzyness. I expect the incontinence to go away, hot flashes are irritating but tolerable. Gotta see what we can do about the impotence. All in all, I feel extremely fortunate.

[bezen]

Also, didn't know this site is seeking donations. Donating now. This has been a wonderful resource. Thank you to everyone.

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

Good news, thanks for your donation....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/21/2019 11:41 AM DST

[snoraste]

well done. Keep it up!

[tango65]

Congratulation. Best of luck with your treatment.!!

[AlanMeyer]

Congratulations on your great treatment and positive response.

As for the hot flushes, every time I had one I thought "Yay! These drugs are doing their job!"

Best of luck.

Alan

[JamesAtlanta]

Congratulations - such great news!

Best wishes,

James

[Tub111]

Excellent news!!!

Sheri (cheerleader for you all now)

[keepinon]

I thoight I was reading my own tx history at first. Just a few months behind you. Scheduled for SRT as soon as my incontinence gets better. My current psa is also .1 My RO says i can wait a bit.

Best of luck to you!

[Hidden in reply to keepinon]

Way to go!

[pleinairpainter]

Congratulations! Thanks for sharing. Keep up the good fight!

[tom67inMA]

That's great news! ADT is no picnic but you have a chance at a cure, keep up the good fight.

[Hidden]

Good news!

[dougnola]

Whooh hooh! Sending my positive vibes to you! I started zytiga/prednisone w lupron in May 2017 after radiation/chemo and bicalutamide/casodex to knock down my 500 psa. It kept getting lower for a year and finally went ND 8/18. So you still may keep dropping, my friend! 0.1 is basically zero though. Yay!

[Hidden in reply to dougnola]

ND the place ... to be ..ah to be Castrated , 4 yrs now for me ,,whoohoo,

[jfoesq]

Congratulations! It's nice to read about such a positive result.

[Hidden]

Great news! Now keep it going ...Curative is good.. good luck ..