Are you looking for a RCT of ADT/Zytiga for HSPC, mCRPC, or Chemo Naive mCRPC? Is the purpose comparison? I have not seen one but my experience is with HSPC.
Great summary of all the BAT trials and where it now stands. Very helpful to see the big picture.Thanks
Why the sudden interest in SOC pca treatments?
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Sudden?
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You do not have a reputation of being SOC. You post frequently about your BAT treatments and such. Just wondering why you're asking about RCT trials with ADT/Zytia. I admire your dedication to the pca studies but you and I have a very similar disease history...from my perspective I'm happy I got thru the treatments and am now on the other side..hopefully for a long time.
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I think SOC is the proven way to go. But it is not always optimum for every individual at every different life stage.
So I talk to my MO and discuss my research and her research. She tells me what she and other doctors think and then I go from there (for example, she told me about Zytiga before it was approved for HSPC and I started on it). I take SOC treatments and tweak them. My universe includes things close to SOC but not there (e.g. BAT), things with a good risk/reward ratio, things that are difficult to follow, conventional SOC therapies, and even things completely outside of the SOC arena if I feel that they are backed by solid data or are biologically logical. An example is ADT. I did ADT three years ago but used estrogen patches and Zytiga. My T was undetectable and I had great results in comparison to what was predicted for me at the time. This wasn't SOC and, as far as I know, the PATCH trial hadn't reported results. Zytiga wasn't approved for HSPC guys. In 2019 what I did was considered far outside the box. Today Zytiga is approved for HSPC and we have the PATCH trial to look at. I suspect that in a decade this approach will be an SOC option. But I needed it in 2019.
I run my plans by her and then put them into action. Or I put them in action and then come to her with test data and describe the therapy that I am following. She makes suggestions and, more often than not, I incorporate them. She's very test-minded and realizes that we are all different with different goals. Our cancers are heterogenous as are we. My goals involve athletics, energy, being a role model for my kids, and I only have a 14-year timeline (more would be great but I only need another 14 years). I don't focus on libido or lack of pain or ease of therapy. She knows that I will spend hours a day on therapies if it gets me closer to my goals.
I pray that you are in remission for a long time and meet your goals also!
Russ
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Thanks..But instead od experimenting on yourself you might consider just hit the bastards hard and being done with it. Not taking any meds has a certain theaieopuetic advantage
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I hear you. I want to hit it harder but my MO is more of a wait until needed person. I plan to ask her for an RO referral next month.
To my MO's credit, I was only given 3 months before hospitalization and it's been over 3 years. My PSA goes to zero when I go on the low cycle of BAT. I didn't see that happening! Anyway, she's very pleased with my status today. I'm looking for 14 more years though so, while I'm happy to be here, I want to do what I need to.
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Yeah.that's where you and I differ..your diagnosis is no different than mine yet I was told 95% of living 10 years and 85% of living 15% years without any treatment. I don’t understand your dismal prediction. Do you have bone metastases?
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No mets, at least as of my last scans on 9/2020 (I haven't done a scan since then because my MO constantly assures me that there is nothing to find).
The Mayo MO and urologist's concern was that my PCa was very widespread and in the 5 months between biopsy and surgery, made a lot of progress. And yet it hardly produced any PSA, which seemed to be the main concern for them. They showed me statistics for my particular cancer breed and it looked to me like I had a 50% shot of living for 2 years (with treatment!). Their predictions were hospitalization within 3 months, not death. So, I can see how their predictions aligned fairly well with their statistics.
MD Anderson gave me the same diagnosis. I never asked them about the hospitalization and death timeframes. I did not want to and I don't think that my dwelling on the chances for a dire outcome was actionable or would be beneficial. I recently saw my MO's session notes and she apparently thought it was pretty amazing when I crossed the 6-month mark. After 2 years she told me that meeting with her was up to me if I wanted to discuss something. I didn't change therapies for the next year so only met with her once.
Are you certain that you are advanced T3b? My post-RP PSA was <0.01 within 3 weeks. Your's sounds more like what Mayo told me that mine would be (they were obviously incorrect and I have no idea why). Your stats sound like, depending on your age, you could do absolutely nothing and the chance of dying from a heart attack, etc. are higher than the risk of dying of PCa. I'm very fit and supposedly have zero extra risk factors and many protective factors yet my cardiac mortality risk is 8% over the next 10 years. Higher than your risk of dying from your cancer without even doing anything!
There are types of PC other than adenocarcinoma that do not produce as much PSA. NEPC and Small Cell are 2 examples. I have to wonder if you have something like those. I also suspect that your M0 status was initial and why you got a RP and the metastes to organs were discovered after that. I am speculating but does that sound right to you?
That ran through my mind also. I talked to my MO and she laughed (in a nice way) when I asked her if was NEPC or small cell. She said that it wasn't possible. My CMP and CBC etc. would have a vary different or a varying profile. Almost all of my metrics are excellent and steady.
After a biopsy in the summer of 2018 I decided to have an RP. Results were G3+4, T2, almost "benign". But I preferred to have surgery earlier rather than later. My reasoning was that the younger I was, the better I'd recover. Mayo concurred. It was at surgery that they found out that it was G4+5, N1M0T3b. I don't understand the scoring system but after MDA gave their second and my current MO never discussed the possibility of errors in grading, I haven't looked into it.
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I had a bone and CT scan 3 weeks before my surgery and both were NED. My post RP pathology showed positive margins, SVI and 1 of 12 pelvic nodes positive. Cribiform architecture was noted.My RP occurred a month after my biopsy which showed 4+5 G9.
The post RP pathology was pT3bN1M0. Locally advanced and nearly 100% of not dying of PCa in 5 years. I'm coming up on the 3 year mark and I am off all ADT for 5 months.
My urologist told me I would be treated like I had diabetes...I interpreted that I would be around for a good while. Like you I in good shape cardiovascular wise and I lifted and exercised regularly.
So I'm perplexed by the dire prognosis you MO provided. Just reaffirms the heterogeneous nature of cancer.
I know the ductal pca is very aggressive...is that what you have?
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I have "standard" adenocarcinoma, acinar type. Post RP positive bladder neck margin (others negative), seminal vesicle invasion (bladder neck and seminal vesicles removed but nerve-sparing done). 1 of 18 pelvic nodes positive. My first PSA post-RP was <0.01.
My 2020 bone and CT scans were negative.
The last PSA was 0.2. I was on the high cycle of BAT and it has been dropping to <0.01 on the low phase.
My cancer is aggressive and based on my low PSA yet T3N1M0 disease with multiple organ involvement, two Mayo docs gave me 3 months. Not before death, but before hospitalization. The last time I saw them was 4 months post-surgery and one of them professed to be "shocked". I recall my Mayo MO showing me stats applicable to my situation. Even if I didn't have the aggressive features the statistics were 50/50 to make it more than 2 years.
Maybe they were doing a little bit of a shock thing to get me to take it seriously and follow their directions. Still, the stats didn't give me a warm fuzzy. My current MO seems very happy with my situation. She predicted bone pain. That was in early 2019. So far, so good. As she says, keep doing what you're doing. It's working. IMO, something is working. I'd love to think it was my inspired genius, winning personality, charm, and grit beating all odds, but I rather doubt it.
I don't know. I would guess that it is because it invaded several local organs but it supposedly didn't metastasize to other areas. I got a second opinion from MD Anderson and it was substantially the same diagnosis.
I never really gave the nomenclature a lot of thought.
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