Pre-treatment: PSA 5.9, 5 of 11 cores positive (MRI inbore guided transperineal biopsy), Gleason 3+4 in two cores, 20 % pattern 4 with Cribriform morphology. Decipher score 75: high risk. High volume tumor. High PSA density (0.2).
Finished up 5th session of SBRT on the Mridian Viewray @ Dana-Farber 3 weeks ago. No SpaceOAR used. Been on ADT (Orvovyx 120 mg daily pill) since Sept 16th. Will continue 'till mid March (6 mos.). Been exercising with weights and walking 3 miles, alternating days, taking Sunday off. Side effects minimal. No libido, occasional very mild heat flush, occasional mild fatigue ( just take a nap ). Weight gain ~ 4 lbs since starting ADT ( I weigh 152 lbs ). Post RT have very mild burning when urinating. Have reduced urine flow, especially at night. Condition stable at present. No retention so far. Feel the burn, feel the flow :). Daily life pretty much unchanged from before treatment. Watching blood numbers to ensure ADT continues to work, and to spot adverse blood biomarkers, so far none. PSA down to 0.17, Testosterone down from 540 ng/dl to less than 3 ng/dl.
Very pleased with this treatment approach thus far.
The ROs initially said I was on the fence for/not for ADT. With Deipher at 75, plus high volume tumor, plus high rate of tumor growth, plus high PSA density, plus Cribriform, plus 20% grade 4, to me it was a no brainer, ADT for the win!
That's over a 95% drop, which is good. And its still early. MSKK, in a retrospective study, talks about <.09 being a desirable number but its a little unclear to me why and within what period of time following RT. They also talk about 95% drop being desirable, which seems easier to apply across the board given the differences of time in taking PSA tests after RT.
Read your excellent post with great interest, since your treatment is quite similar to mine. I had five-fraction SBRT (Cyberknife) at Georgetown four months ago, immediately followed by Orgovyx, starting in late August. My RO was Dr. Sean Collins, whom I liked a great deal.
My PSA, 5.7 pre-treatment, is now down to .034 and my testosterone level is negligible (lab results from last week). Like you, I intend to stay on Orgovyx for six months. The side effects you describe have been light to moderate for me. Good luck!
Hello Boonster,Glad to hear that you had a good experience at GT and had a very good outcome. I'm finalizing my treatment decision and SBRT at GT is one of my two remaining choices. Was wondering if you has the Spaceoar jell inserted and if you were sedated for that and the fiducials or was it a local numbing? Also how are the side effects 5 months in?
Mandol1, hi. I did not have the Spaceoar. I was sedated (anesthesia) only for the placement of the fiducials. The side effects from the radiation 5 months in are now minimal. The side effects from Orgovyx are moderate (hot flashes and occasional fatigue, primarily). Good luck!
Glad your treatment is going pretty well. I'm trying to track sites that are performing MR in-bore guided biopsies, would you mind telling me where you had yours done and was there any insurance coverage?
Thank you!, this is great news. I had mine done in early 2018 by Dr. Dan Sperling in Delray Beach, Fl. Had to pay $5K cash. At that time I believe he was the only one in the country doing the fully MR in bore guided biopsies. There a few around but the best part is the insurance coverage. As an imaging engineer it seemed strange that they were using the MR for the ultrasound fusion guidance but not just doing it in bore. I think it was an issue of physician training.
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