My story is in the bio. Had an appointment with my Hopkins MO yesterday. Apparently my case is weird enough that it has attracted a fair amount of interest there. They're trying to understand how in these circumstances in the absence of treatment the PSA could be rapidly dropping. Neither my local URO nor the head doc at NCI where I'm enrolled in a study can figure it out either.
The MO said they don't believe it's due to the non-PSA expressing cancer line for the simple reason that the post-surgery findings found the standard tumor type and the PSA rose as high as 9.5 in a more or less standard pattern until it mysteriously dropped to 3.4 and then 2.
She said they've seen exactly one patient like this before and in that case the theory was that a viral infection -- she didn't further elaborate -- triggered a physiological immune response that had the happy effect of suppressing the cancer. Hey, I don't know, they're the docs.
So she questioned me closely about any illnesses I may have had this year. Well there is one actually: thyroid cancer which is in surveillance mode pending a follow-up ultrasound next week.
The only other thing I've done is intensify a longstanding low-carb diet which greatly reduces glucose production in the body. There's a theory out there that glucose acts to fuel cancer. Don't know if there's anything to that.
My next PSA is in February and the next PSMA at NCI is in May. So we'll see. Since I took a 3-year break in PSA testing until a reading of 7 in August 2023, I'm guessing my PSA has been elevated now for at least 4 years and probably closer to 5.
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Nittany
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Congratulations, whatever the reason! You are at a superb COE. I receive my treatment there as well.
Glucose likely does, in part, fuel cancer cells, as it does all cells in the body. If have normal metabolism (not diabetes for instance), your body regulates blood glucose within a fairly narrow range. If you take in little glucose from a low carb diet your liver manufacture glucose in a process called glycogenesis. It makes glucose from available protein and fat in your diet or stored in your body.
The idea that maintaining a low carb diet somehow "starves" the cancer cells doesn't make medical sense.
Thanks, doc. Another thing I've done diet-wise, and this actually started several years ago, is consume 30 almonds a day. That's my lunch. I began this after reading a study suggesting that the consumption of an ounce of tree nuts per day measurably improved survival rates in cases of metastatic prostate cancer.
The immune system is potent, and powerful, and is why Oncology is trying to exploit it's use in cancer care. So that's a great guess ...
The low glucose diet, well, we know PCa is not glucose dependent except in well advanced cases of PCa. But with that said, sugar and inflammation go hand in hand and inflammatory diseases have a lot of association with cancer and immune response...
Real question is always the association of PSA and actual cancer activity. Meaning if my PSA went up 2ng per year, and my life expectancy is 20 years forward, would having a PSA of 40ng represent enough cancer activity that would impact my survival? QOL?
Action levels of PSA isn't something I necessarily have seen tracked in studies... Outside obvious levels like those being newly diagnosed in triple digits not having great results or longevity.
Drop in PSA is a good thing, as long as other avenues have been exhausted to ensure there is no PSA naive activity happening. Maybe an alternative scan? FDG, etc? Not sure about this path, but I would inquire.
Thanks, cool. Yeah, the PSA thing is a bit of a riddle. The Hopkins oncologist told me that it's an imperfect indicator but remains the best readily available.
You know, it's hard for me to regret that I violated every protocol on the books by blowing off the PSAs for three years after going undetectable for two years after surgery. If I had followed the rules, they would have started me down the standard treatment road long ago...and that's not a lot of fun. As it is, I've had probably a full five years of entirely normal life...after my PSA started to go up. And now it's going down...and nobody knows why.
Would I recommend that path to anyone? Hell no. In fact, if it were my son who did that, I'd be beside myself. Because in the end, this will likely catch up to me one way or the other.
Meanwhile, being Irish, there's a streak of fatalism in my personality. It's like, if you're fortunate enough to get into your 70s feeling pretty good...and you've seen your kids grow up and be successes in life with thriving families of their own...and have a comfortable life in retirement...well, it's all gravy after that. I don't want to die. I don't want to suffer. But in the end, we all will...whether because of prostate cancer or some other reason.
I heard an interview with a doctor on NPR a few weeks ago, an end of the year recap of notable discoveries. The doctor had a team investigating why. in a small number of COVID patients, tumors disappeared. The doctor administering LU-177 to me overseas told me that he has some patients who are cancer free for a decade. He thinks that in some patients the immune system recognizes the cancer. Perhaps you have a high functioning immune system. I hope so!
One hypothesis is that since cancers grow in the absence of fever, the cancer cells are much more sensitive to elevated temperature.
Knowing this, I was hopeful that getting Omicron might produce positive results. I didn't try to control fever. I also had Covid in the 'zeroeth wave' in late 2019. At that time I hadn't been diagnosed with PC, and just treated it as a somewhat different respiratory infection.
That is very interesting. My Psa started to climb in April 2024. It climbed steadily through Nov 2024. My Psa was 6.72 on Nov 14 and Nov 24 I got my Covid injection. Psa on Dec. 12 was 5.7 and alp dropped to 63 which was about 20 points. Jan 9 Psa was 7.12 and alp climbed slightly. The only other thing that was changed was I went from four Abi without food to one Abi with food because there was a problem getting my prescription refilled. I did this on Nov 27 until Dec 16. Back on four now but I plan on getting another T test while on four to see if it is non detectable like it tested when on one with food.
It may have been in the same report I mentioned above, researchers talked about COVID interacting with something on the outside of monocytes. Monocytes, like T cells can be recruited by cancer cells. These COVID affected monocytes act as double agents, the cancer cells think they have been co-opted, but they are engaging the immune system to attack the cancer cells.
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Thoughts about PSA....
PSA test didn't detect my cancer. What about post treatment monitoring?
Docetaxel/Taxotere stopped after 7th Infusion
My Introduction - elevated psa, unconfirmed prostate cancer
No Longer Undetectable
