Update from the weirdo declining treatment

[Nittany]

My story is in the bio and previous posts. Won't repeat it here.

I was at the National Cancer Institute last week for another series of labs and scans as part of a surveillance trial which can be converted to a treatment trial whenever indicated.

The lab results were all good. In fact, the PSA value was seemingly amazing. The number continues to drop and is now down to 2 from a peak of 9.5 in June.

It turns out, however, as Allen warned, that there's a less-than-cheery interpretation of this trend that the doc heading the trial thought unlikely but couldn't categorically rule out: the rare and virulent form of prostate cancer that doesn't express PSA.

For various reasons the doc didn't think I have this variant but he was mystified as to why my PSA number has been dropping. He said he's been tracking PSAs in thousands of guys over a period of many years and rarely seen the pattern of readings that I'm exhibiting.

That aside, the CT scans of my chest, abdomen, and pelvis were clean...negative for indications of disease or abnormality. The bone scan revealed a single spot of undetermined significance near the right eye socket of all places. The report labeled it as "incompletely characterized" which appears to be med-speak for insufficient data to make a confident judgment but worthy of particular attention in the next scan.

As for the PSMA-PET, the doc described the results as "relatively stable" compared to June's. Specifically, the scan found: A) a "persistent" and "suspicious" spot in the prostate bed that hasn't changed from June and was in fact of lesser intensity (SUV 2.7) than was the case then; B) a "tiny" and also "suspicious" spot in a pelvic lymph node that also showed little change from June; and C) a "subtle" (med-speak for even smaller than tiny) spot on the left 4th rib that may or may not be of concern. In fact, the latter was the only new development. No other indications were found anywhere in the body.

So the doc thought that on balance we should continue on the current path with my next trip to NCI scheduled for the spring. He said "subtle" spots on ribs often turn out to have no significance. We'd need another scan to judge.

Meanwhile, in January I will have a consultation with the Hopkins oncologist. I continue to feel perfectly fine but also know I have an ultimately deadly disease and am far from out of the woods. We'll see what happens.

[traxcavator]

I don't know how many of us are on here. It seems likely it's a large enough population that we should see some outliers. Those that are experiencing positive developments should be studied to see whether there is any common thread or threads.

I've been seeing something that's also weird: Although my numbers are still outrageous and continue upward, my doubling time has been increasing. It was 64 days earlier this year. Over the past several months (doing PSA test mostly monthly at Quest) it has gone to 94 days, 149 days and earlier this month to 1270 days. I'll do another test early in December.

Logically: If some factor were to encourage the growth of non-PSA-producing cells, there's no reason to expect that existing PSA-producing cells would change their behavior and stop production. So, in the absence of somthing that would kill off the PSA-producing cells, there's no reason to expect a drop in PSA even if some new cells don't produce PSA.

John

[j-o-h-n in reply to traxcavator]

Would you be kind enough to update your bio. All info is voluntary but helps you and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Nittany in reply to j-o-h-n]

Done.

[j-o-h-n]

Thank you and enjoy your Thanksgiving.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Nittany in reply to j-o-h-n]

Happy Thanksgiving to you as well, John!