A Year of Deterioration. With Hope.

On December 14, 2021 my PSA numbers began to indicate that the Study Drug protocol I was on was entering a stage of failing effectiveness, a stage where the prostate cancer cells were beginning to figure out how to reproduce in spite of the drugs that were being used to suppress them.

I had been experiencing success far greater than expected up to that point with a PSA value that alternated between "undetectable" and 0.1. According to one estimate, this drug protocol might be effective for only 8 months total, yet I was flourishing on the program going on ~3 years. To that point in December, every time my PSA would fluctuate from "undetectable" to 0.1, our anxiety about the following month's blood draw would peak, then we would experience relief as the number would again drop to "undetectable," but this time, it remained at 0.1. It was the first time the number had remained detectable for two months in a row, and was cause for us to mentally prepare for the beginning of the end for that particular treatment.

We didn't know what was next. I am told that there are many treatments still available for Stage 4 Prostate Cancer, including other drug trials, and always as a last resort we could "knock it back down" with chemotherapy.

Anxiety is easy to come by as you watch your cancer report card deteriorate, and by July of 2022 when my PSA had increased by 20 times to 1.9, it was obvious that something new was going to be required to keep up the fight. Read my last post from 10 months ago to hear the amazing story of how God increased our tranquility through miracle, faith, and simple trust.

By October, my PSA had risen to 6.2, officially eclipsing the "normal" range of from 0.0 to 4.0, heralding the end of the program, and by November I had taken my last set of pills.

We discussed with my doctor what was next. There were other "Studies" available, one of which used the same pills I had just come off of with an additional pill and had the wonderfully attractive (sarcasm here) side effect of exceptional diarrhea. Another option discussed was a new treatment that had just been approved by the FDA after successful trials, called Lutetium. This treatment is a nuclear medicine that attacks cancer cells directly, wherever they are, in a way, the "Holy Grail" of treatments.

Consider the analogy of dusting furniture. When furniture is dusted it immediately looks pretty good, but it doesn't last. There is still dust in the air, and it will settle. Cancer cells are like that, floating everywhere, but visible in tumors and lesions.

Usually, when one attacks cancer with radiation, like proton beam therapy, the radiation is focused on attacking what can be seen, like dusting a shelf. The dust in the air will continue to circulate - just like free-floating cancer cells in the bloodstream - and will again settle and reattach.

In layman's terms, Lutetium is designed to seek out and destroy every cancer cell in the body, not just the ones that have created visible lesions. It does this by identifying something called PSMA and killing it. According to some estimates, ~90% of men with Prostate cancer have cancer cells connected to, or somehow bonded to PSMA. Kill the PSMA, the cancer cell dies with it.

That sounded wonderful, and in the first weeks after hearing about it, the articles we read were even more encouraging. We agreed with my doctor that Lutetium was the route we wanted to go next.

But there was a hitch. They couldn't make it fast enough. Our hospital (UC Davis) was one of only three hospitals approved for providing the treatment, and even limited to three hospitals, the manufacturer still could not make enough of the drug fast enough to provide the 6 doses necessary for proper treatment. We were looking at a 3 month wait after the drugs were ordered, and the drugs could not be ordered until after it was confirmed that my particular cancer cells had PSMA present.

A PSMA PETscan was required in order to determine if the treatment was even possible, and a scan was scheduled for February. By the day of the scan, my PSA had risen to 21.1, only 5 points shy of what it was when my cancer was first discovered. It was with great relief that we learned my cancer cells were paired up with PSMA and I was eligible for the Lutetium treatment.

On February 7, 2023 orders were put in for the drug, and the waiting began. On March 29, my PSA had risen to 29.3 and we received the bad news that the drug company was even further behind, making a 4 month wait inevitable, with no promise even then.

On May 10, my PSA had risen to 43.5, a truly nerve-racking number, but worse than that, several other blood chemistry numbers were quickly rising out of control, one of which indicated potentially permanent damage to my bones, making them brittle. My Oncologist reacted to these numbers by saying I needed treatment within the next 30 days or we were going to need to go directly to chemo to knock it back down. I hate chemo.

Physically, I am feeling the effects. I'm experiencing bone pain constantly, usually at a level just below reaching for the pain-killers. I am unable to walk or stand for very long without significant pain in my hip socket and the muscles around it, and my sit bones are in a constant state of throbbing. It feels like I've been kicked and the bruising refuses to heal and go away. I feel like an old man.

I am thankful - INCREDIBLY THANKFUL - that God in His mercy and kindness led me into self employment, and in the past year, the ability to run my business from home with a laptop. My product is now made in the USA in Modesto, California, and the factory offers assembly and fulfillment services for a reasonable fee, something that has mitigated the financial damage that would have been caused by my developing physical limitations.

After conversing with the oncologist about the dangers I was facing after 6 months of going without treatment, last week was shaping up to be pivotal and I was reaching out for more help than usual. In the Holy Orthodox Church, we believe that saints are not dead, that they are living and in the presence of Christ, though bodiless. While I was re-listening to an old podcast, the one that was the original trigger that sent us down the path to becoming Orthodox, I was reminded of the interesting reality that saints seem to have different areas of responsibility or sensitivity to challenges those of us with bodies are facing here on earth. Saint Nectarios of Aegina was specifically mentioned in the conversation because of his care for people with cancer.

I love Saint Nectarios. A wonderful movie documentary was made about his life a couple years ago and I've watched it - with tears - 5 times and counting. I wondered if Juli and I had an akathist (Literally - "Standing Prayer") we could pray, seeking his intercession with God for me, and sure enough we did, so beginning Saturday night I added that prayer to my evening prayers. Sunday night  was very special, peaceful, trusting God for whatever outcome He desires for me, and asking St Nectarios to pray for my physical healing, and/or courage to suffer to the end if that is the desire of God, as many others have done before me.

Monday morning - yesterday - I woke up and finished my early morning routines and then I called the insurance company to see if any progress had been made. They said that not only had they received all the paperwork they had been waiting for from UC Davis, the treatment had already been approved and the authorizations returned. Within an hour, UC Davis called me up to say that they had successfully reserved 6 doses of Lutetium for me, and they proceeded to provide me with a schedule for one dose every 6 weeks, beginning June 7, ending around Christmas.

Thank you my living friend and Holy God-Pleaser Nectarios.

Will this treatment work? I don't know, but I think so. There are some side-effects that may be uncomfortable and may take months or even years to heal from, but it seems to be a risk worth taking, and I am hoping for extra years, not extra comfort.

May it be blessed.