Long read…you are warned.
Here’s a follow-up to my prior (14 months ago) follow-up.
As a recap: June 2024 I discovered that I had prostate cancer. PSMA was 54 so, at first it was, “expect to die (they don’t use quite that verbiage) in 3-5 years,” because it likely has spread distantly.
Immediately they wanted to do a trans-rectal biopsy which is pretty much as it sounds, enter your rectum via your anus and stick 9 meaty needles through the rectal wall to obtain some “cores.”
“Screw that,” I thought and sought out a urologist who did the same, trans-peritoneal, under anesthesia. It was pretty much a cake walk.
A fairly new tech thing, PSMA-PET scan was valuable, as it ruled out distant mets (bone, liver, lungs, etc.) The only negative is that it costs (supposedly $30,000) but you can get it done in Belgium for US$700, go figure. I ended up going to the wrong place and they are billing me $3,000. I had explained that I was concerned as to whether they were in network. I was told, “that’s all set, we already have authorization.” I could have gone to a nearby place that was in network. That’ll be a court battle, eventually.
The PSMA was negative except for a small ~5mm extra prostatic extension into the pelvic sling.
What is interesting is that the 12-months prior to its discovery I had been using Sirolimus, and had 44 days of fasting (2 & 3-day fasts) and had gone from 220 to 164.
From discovery to radiation, I was using modified pectin and a number of other supplements known to cause cancer death, to prevent cancer spread, and so on. NAC; Tran-Pterostibine; Astaxanthin; Ashwagandha; Berberine; Turmeric, Piprine and others.
I bypassed the first Oncologist who was overtly paternalistic and “this is what we will do…”
A second Oncologist was superb, just superb, but he suggested an associate which I could walk to from my house, which beat an all day trip (radiation is 28 sessions).
The third Oncologist was a 2nd opinion from a woman at Dana Farber who had a global reputation, and who confirmed that my choice of Orgovxy + Abiraterone was a much better choice than the usual Lupron which almost everyone gets (and IMO, nobody should get).
The 4th Oncologist was the fellow down the street. The 5th was a Radoc, Radiation Oncologist who looked at my med record and said: “Gosh, you’ve been to 4 Oncologists—that must be a record.” I ignored that, the fellow knew his stuff, so who gives a hoot about bedside manner.
I put off IMRT (radiation) for 9 months, hoping to shrink my prostate. This did work, with a 48% volume reduction. Imagine a baseball, then add 6mm to its radius. Now, imagine a golf ball, the sphere of intense radiation shrinks, protecting organs like the rectum, and bladder. 48% reduction was tremendous, though the docs won’t discuss the difference between the two scenarios.
My onc wanted to do the usual Lupron, but seemed wow’d by the woman Oncologist at Dana Farber so agreed to the two meds I wanted. So I went on Orgovyx + Abiraterone (Theoretical retail cost was $146,000). I bought some from India at $200/month for both (Cipla, so high quality). I later found these strange “plans,” so that means I got all my meds for free.
I think this how that worked: Retail for Orgovyx was $6,000/month. I think they gave me free meds, and then collected the retail price from Medicare, so let’s say they paid $500 and got $6,000, it’s very strange. My Medicare records show that I “paid” $2,000 co-pay, for these meds. I paid zero. Weird Shenanigans.
When I went on the two Androgen Deprivation meds, I stopped that entire list above as every single one inhibits the Cytochrome P450 3a4 enzymatic systems. The effect on Abiraterone had I stayed on them (for instance Curcumin + Piprine) could have caused a blood level increase of the Abiraterone 4-7x, thereby increasing adverse effects. This is the same as drinking grapefruit juice with Sirolimus to increase blood levels.
The 28 sessions of IMRT (radiation) were uneventful. Sadly, most men can have an injection of hyaluronic acid gel placed between the rectum and the prostate. This was contraindicated in me because of the extra prostatic extension (damn).
I’m now 10 days post-IMRT with some mild, expected issues such as urinary urgency, and GI upset which should go away in some weeks. The biggest negative I have is “Dolly Parton” boobs. I asked to be sent to ultrasound to see if this was steroid induced fat (which is also affected by the fact that the body senses itself as female, no male, with all testosterone shut down), but the Ultrasound Path doc would not answer the question: Are there any signs of gynecomastia (true female tissue development) which affects about 14% of men on this regime. The idiot would only answer: “Congratulations, you do not have cancer.” Ultimately, I gave up.
If the boobs are female tissue I’ll get a double mastectomy, and I’m serious. The social “trans” movement has created a large number of surgeons that specialize, and the outcome is superb (20 years ago it was horrid). The other real issue was muscle loss. One year ago on a lat push-down device I could press 185lbs, today, about 95. But that will come back. Testosterone will return in a month or three.
I did pressure my Onc, repeatedly for a new genomic test called the Decipher and was very happy that I did. Genomically, the tumor is non aggressive and I hope to go off the ADT meds in a week or two, earlier than expected. (But remember, most men with similar cancers would be stuck on the barbaric and dangerous Lupron for two years).
The Decipher test predicts, for my cancer a less than 4% chance of recurrence within 10 years. Hey’ I’ll take that any day.
I would like to start back up on Sirolimus. I was buying mine from Jagdish. I’d be very appreciative if someone were to summarize if Jagdish is still selling and how the tariffs are affecting things. It may be that going so some Sirolimus doc and then buying generic is the only way today.
