Hi all - I'm the wife of Ken, diagnosed in May 2020 with Stage 4, Gleason 9, extensive mets to bones, PSA 209. Started on Lupron, PSA dropped to 6 by mid August 2020. Traveled to Germany to St. Georg Klinik for insulin-potentiated chemo + full-body hyperthermia to complement ADT SOC treatments. CT and bone scans in the following October showed most mets resolved or decreasing. Started on Zytiga in December 2020. PSA continued to decline until reaching 0.2 in July 2021. Underwent radiation to the prostate to try and get one "residual tumor." Post-radiation PSA was 0.5 and doctors were very happy. Bloodwork was perfect. All numbers normal. MO wanted to wait until November 2021 for next PSA and CT/bone scans. PSA in November is all of a sudden 3.85, two weeks later, 6.25, two weeks later, 10.2. Bone scan is showing no new mets, mostly everything decreasing in size or resolved, but one problematic area on the pelvic bone increasing in size. CT scan is clear. No new areas of concern.
My question is - are we looking to do Xtandi next? Is it beneficial to do something in between Zytiga and Xtandi? Like Doxatacel or even BAT? Does BAT have a benefit for those with Gleason 9? The doubling time for PSA is so crazy that he'll be back up to his original numbers at diagnosis by May 2022. MO is already talking about clinical trials and it's really throwing us after such an amazing response to ADT at the beginning. Thanks to anyone who can tell me what questions to ask at the next appointment. He has no gene mutations that are helpful. He's 55 and we have 3 grade school-aged children.
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marchinda
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You may want to get a NaF(18) PET scan as baseline, and see if Xofigo+docetaxel+Provenge reduces them.
"My question is - are we looking to do Xtandi next? Is it beneficial to do something in between Zytiga and Xtandi? Like Doxatacel or even BAT?"
Going to Xtandi next would likely not work for long if it worked at all. That's because their is cross-resistance between Zytiga and Xtandi. There are occasional exceptions, but this is case for most people.
It's better to alternate chemotherapy such as first-line Docetaxel or second-line Cabazitaxel with anti-andgrogens such as Xtandi or Zytiga. The idea here is to kill off some of the cell lines that have become resistant to these treatments. After chemo, it's likely he would get a better response to Xtandi.
There is also LU-177, not yet available in the US (hopefully by mid-year 2022). It is available in several countries although Covid is making travel a nightmare. If he wants to pursue that treatment he would need to get a PSMA PET scan to see if he has enough PSMA expressed for the treatment to be effective.
I heartily agree with both TA and G57 - I think standard of care (SOC) sits on chemo in between our hormonal therapy choices.. hopefully your MO is versed on this. I am very confused why your MO is moving on to "trial" talk when the options put forward by TA and G57 are still on the table and can be initiated right now.
Another simple change that can be done today is a request a change from prednisone to dexamethasone while still on Zytiga. This steroid swap - supported by a European study - has so far gotten me an extra year on Zytiga after rising PSA indicated treatment failure. It seems to be a 50/50 chance, but it should be tried ASAP.
Good luck - as a younger PCa patient (diagnosed at 49, now 54) with non-adult children, I understand your urgency. Keep posting here with your questions/comments - I can't tell you how much helpful information and support is within this community. - Joe M.
I’m having a good run with Zytiga generic and prednisone of over two years. I’m researching with the help of Integral MD, and strongly considering cannabis and perhaps mistletoe(success in Germany), before Zytiga stops since I know it will.
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