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Hormone Sensitive, Advance Prostate Cancer - Agressive Treatments
I am 69 and live in Portland, OR. I was diagnosed with a PSA of 25 in 2019 at age 63 and had surgery in early 2020. The surgeon found other affected tissue outside the prostate. That began my journey of treatments. I started with lymph node targeted radiation and 8 months of Elegard. I took a break from that and over the next several months my PSA approached 4.0. We did a PET scan and located another lymph node to zap. We did that and I started 6 months of Orgovix. It has been about a year since ending that and my PSA has been doubling about every 3 months and I'm at about 12 now. I have had 2 PET scans with different agents recently and they are not finding anything significant to treat with radiation. My current doctor wants me to go 6-9 months on Elegard plus a Gen 2 inhibitor. I am very much interested in finding the cancer so it can be treated instead of just putting it to sleep for a while. I am still hormone sensitive.
I have been doing a lot of research and watching presentations mainly on PCRI.org Some of the doctors are recommending more aggressive approaches. Because of that, I decided to go to Mayo Clinic in Rochester and met with Dr Eugene Kwon's team. They are focused on cure or remission. I am returning in a few weeks to do a PET scan with a Choline tracer, a pelvic MRI and extensive blood tests. Then I'll meet with Dr Kwon and talk about a path forward.
If we cannot see a tumor with those tests, it may mean I have micro-metastatic cancer. Just a lot of very small groupings spread around. The other possibility is having a type of cell that does not show up on PET.... very rare.
In that case, the suggested treatment may be Elegard, Zytiga (Gen1&2), and Docetaxel (Chemo) all together (Triple Tharapy) The chemo is six treatments one every 3 weeks. Then I would remain on the Gen1+2 for a couple of years. He has had some luck with this approach in cure or remission.
I am wondering if there a men out there that have tried or considered a more aggressive approach with Dr Kwon (Mayo) or others. If so, what were your treatments, results, and experiences?
Thanks in advance,
Bert
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I have oligometastatic castrate-sensitive prostate cancer, and am receiving latest standard of care (SBRT radiation to both the spinal metastasis and prostate, ADT, and one of the -lutamides). Additionally, I had emergency debulking surgery to the spinal metastasis, which isn't normal standard of care, but was necessary to halt the spinal compression and save my mobility — although that wasn't directly part of the cancer care, several recent studies have suggested that decreasing the tumour burden that way improves the odds of deep, prolonged remission, so it may have been an accidental benefit. 🤷
Whatever the reason, I started treatment in 2021, and my PSA is still undetectable on the ultrasensitive test almost 4 years later, with no sign of progression in scans or other blood work.
I hope that info is helpful. Chemo (Docetaxal) isn't usual standard of care for oligometastatic, castrate-sensitive PCa (they radiate the individual metastases instead), but that and/or Pluvicto may come into play if the cancer becomes polymetastatic or castrate-resistant.
Best of luck settling on your own treatment programme!
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3 ReactionsI have no experience or familiarity with what to do in your situation.
However, there is a virtual prostate cancer support group meeting this evening (Wednesday) at 7:00 (ET) at this Zoom link: https://us02web.zoom.us/j/82817487939
There are a couple of guys who regularly attend that virtual meeting who had diagnoses like yours, and can describe options.
That would be a great place to ask your question and get experienced responses from guys who have been there.
I took the trek north from Kansas City to consult with Dr. Kwon after surgery, BCR, SRT.
At the time, folks here were still inclined to monotherapy, ADT, for a lifetime, destined to fail, death. The PSMA PETs were still in trials, Mayo had the C11 Choline.
Dr. Kown's approach at the time was to use imagining, then do muli-faceted treatments, ADT, Radiation, Chemotherapy. He would also consider adding an ARI if PSA was not responding.
My triplet therapy went well, when I completed it in 2018, I had a 4+ year break before going back on treatment. I'm at 15 months off now after completing SBRT and 12 months ADT in April 2024.
Today I have a medical team here in Kansas City that are open to more aggressive approaches, doublet, triplet, active listeners and support shared decision making. So, no need for me to make the trek north.
I like Dr. Kwon's approaches, there are some in his field who are not fans but given the heterogeneity of PCa, unlikely one will find consensus!
Aggressive PCa generally requires aggressive approaches
Kevin
Kevin
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2 ReactionsYes, I'm lucky that the "memo" about the massive shift in treating advanced prostate cancer had made it to big Ontario Cancer Centres by the time I was diagnosed in 2021. My oncologists knew all about TITAN, STAMPEDE, etc., and put me immediately on ADT + Apalutamide while scheduling SBRT radiation for both my spinal metastasis and the prostate itself. I don't know if I would have had the same luck 3 years early; they might just have said something like "You're at stage 4, so all we can do is slow down progression and keep you comfortable for your last couple of years." 🙁
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3 ReactionsCongrats on geting to Mayos- they are extraordinary. Question - how did you do on Orgovix?