New Dx - AVPC

Not great news ... you have been through the wringer and maintained such a positive attitude. They are having more and more success in treating these variants. Here's hoping they find a workable solution for yours.

It appears that you have neuroendocrine Prostate cancer. Have they done an FDG PET scan to verify that it can be found? A regular PSMA PET scan doesn’t really detect that kind of prostate cancer since it doesn’t have PSMA.

That type of prostate cancer is not able to be treated by normal means. It doesn’t produce PSA, Did you have a very low PSA? It could be you have a mix of regular prostate cancer that can be treated and neuroendocrine which really requires Chemo with carboplatin.

Do a search on the web for DLL3 clinical trials. Those are trials to try to find something to treat neuroendocrine prostate cancer. I Found that the clinicaltrials.gov website doesn’t really have anything. But a web search can find a few different trials going on. I did it for someone a couple of days ago on another forum.

The two guys I know that had that type of prostate cancer passed within a year. One of them tried to get into one of the trials, but he was too sick to join it.

@tjs911 - Thank you, my friend. Much appreciated.

Yea...I have a positive attitude, all right. I'm positive that if the friggin cancer doesn't kill me, the treatment will. 😁🤣🤣

@jeffmarc - Geez Jeff. Aren't you a breath of fresh air today. At least oncology listed my
prognosis at 1-2 years. 🤣🤣🤣

Just kidding, of course.

Here's the jist of the conversation. My choice,

1) Docetaxel - Clinical improvement demonstrated in approximately 50% of patients. Side effects may be severe but are typically more manageable.

2) Carboplatin / Cabazitaxel w/ prednisone - Has demonstrated increased effectiveness but side effects are typically more pronounced and more difficult to manage.

3) Start with Taxotere and evaluate after cycle 3. Effectiveness should be measurable at that point and if negative results, decide whether to move on to option 2.

I chose option 3. Riding that fine line between quality and quantity.

Since PSA keeps bouncing from low to elevated, suspicion is that there are variable cancer types. ADT demonstrated pronounced lymph system effectiveness; however, rapidly advancing bone metastasis, coupled with TP53 and ASXL1 mutations indicate a AVPC component.

@mjp0512 have you been actually diagnosed with neuroendocrine prostate cancer? Did you have the NEPC blood tests done?

@johndavis60 - Hi John. No, the only specific mention has been AVPC at this point. Neuroendocrine has not been discussed. My understanding is that AVPC is a blanket indicating more aggressive forms of PCa that may or may not include neuroendocrine. Frankly, at this point, I'm not sure it matters unless we need to verify criteria for acceptance to a trial. We're just trying to slow this stuff down before I lose the ability to walk.

@mjp0512
Hello, Dude!

Hang in there—don't give up!

Has none of your doctors suggested transplanting white blood cells from other people into you?

@denis76 - Are you nuts? I've got enough wrong with me without being injected with somebody else's problems. 🤣🤣🤣

Serious answer...transfusions appear on a list of future options. Pretty sure I will put the brakes on this nonsense before we get there.

@mjp0512
Option three sounds good, Checking after three cycles will give you a good idea of what’s going on.

I like the fact that they’re adding prednisone with the Carboplatin. It can really make someone feel better due to the side effects.

Best of luck With your choice.

@mjp0512

I am so sorry to hear this Mpj : (((, you really can not get a break from this stupid cancer that went berserk *ughhhhh !!! Somebody mentioned this trial and went to check it - it is for metastatic CR cancer :
https://ascopubs.org/doi/10.1200/JCO.2026.44.7_suppl.17
I do not know if any center near you is accepting patients but I think it might be worth exploring .

In the meantime I am sending you hugs and famous "healing vibes" and I know that you know this, but just in case , nobody of us is born with expiration day barcode printed on our forehead , so all those "predictions" are some "averages" that they got retrospectively and not in "real time". We saw a great deal of patients here that got a "2-5" years but are still here 8 or more years later and not even close to being done with their options.

When is your next infusion ?