The good news we got yesterday is I am still undetectable 6.5 years after diagnosis at Gleason 8. I am T3N1M0 (Stage 4A). Except for a vacation 1 year after my RP (very ugly pathology showing "particularly aggressive cancer) when my PSA showed a doubling time of ~2 months, I have been on ADT. With my PSA so low the scans I get here show nothing. But we know it is there.
The newer news is I am on Xtandi as well as the ADT. After about 8 months of it, 6 of those at 3 pills a day instead of 4, my PCa specialist and my Onc have agreed that 2 pills a day (I have really bad side effects) should help while still extending my life expectancy. I mentioned casodex yesterday and he said "we don't give that anymore.- Xtandi is the new casodex." That made the plan much easier to understand, and I fully concurred as did my wife.
I had an oncologist here who would not talk about doing this sort of thing - I have a new oncologist. The first Onc even told the PCa urologist that he would NOT change his ways. ADT forever until it failed. What with all the other drugs coming down the pipeline, protecting yourself as best you can is the best thing you can do. We CAN beat this beast, maybe even without Gatorblood regimens.
~ Marshall
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Beermaker
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On Xtandi 6 months. Off Taxotere 4 1/2 months. With just Xtandi side effects getting worse and spreading, may have to cut back. Just over one year into this stage 4 Gleason 9/10.
Been on triple ADT for 4+ years, ever since stage 4, Gleason 9 DX. Been on Xtandi for 2 1/2 years, still undetectable with clear scans but like you say, I know it's still there just dormant.
I too had to cut back from 4 pills to 2, side effects just became intolerable, seemed like the longer I was on Xtandi the worse they got. Still experiencing SE's but just dealing with them.
All of my docs including Dr. Myers before he retired and now Dr. Sartor along with my local onc recommend that I stay the course, if it works don't fix it. Hopefully the Xtandi/Lupron/Avodart combo continues to work, but I'm sure they will run out sooner or later. Sartor says new treatments are happening so fast that we could have something new to throw at it so just sit tight.
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