Wow. It has been five and a half years since my last post! I've had great times with grandchildren, sons and their wives, friends, traveling, woodworking, cycling, reading, and other family. I am very glad I decided to ignore the cancer as much as possible.
I was not sure I would be alive now, but the treatments have been unusually kind to me. I had a couple of years with ADT (specifically Lupron, a drug that shuts down testosterone production from the testes), and then my PSA started to rise again. Uh oh! We added abiraterone (a new drug that shuts down testosterone production from the adrenal gland) at the end of 2020. My PSA dropped to undetectable again. Yea!
In December of 2021, I retired from my job in San Francisco and moved to Minnesota. I loved my job as a software engineer but my job made life move very fast. I wanted to slow things down. I also decided it was time to switch oncologists, and I was lucky to find a superstar at the University of Minnesota Cancer Center: Emmanuel Antonarakis.
My PSA continued to be undetectable. Every 3 months, I went for my PSA test, knowing it would eventually start rising. My life became 3 months at a time. I was very fortunate: my PSA remained undetectable until June of 2023. 30 months. The median is 16 months, so this was spectacular. However, I was now "castrate-resistant" (my cancer did not depend on testosterone).
Starting in June of 2023 my PSA doubled every 3 months. After 18 months, in November 2024, my PSA had gone from undetectable to 1.05 and things started getting interesting again. After years of waiting, the cancer was ready for some action.
We started with a liquid biopsy. The dying cancer cells leave DNA behind in the bloodstream, and there are now tests that analyze this DNA to get lots of good information on the cancer. Fortunately, the test came back with a ctDNA of 0.0: not enough cancer to analyze. Hurray, maybe I'm not really metastatic yet as we had assumed. Unfortunately, it also meant we didn't learn anything new about my cancer.
Next up was the PSMA PET scan. In the 8 years since my prostate cancer diagnosis, we have never been able to see the cancer in scans. Despite a general opinion that my cancer was systemic, there was no proof. No more. The PET scan in November showed two "mets". One in a lymph node, the other on a rib. I am officially metastatic.
Only 2 mets meant I was "oligometastatic": only a few mets. At this stage, it is reasonable to zap the mets with SBRT-directed radiation (a couple of sessions). I met with a radiation oncologist to make a plan. Unfortunately, the lymph node met was a mesorectal node, very close to my rectum and very likely at the margin of the prostate bed radiation I had received in 2017. Applying enough radiation to that node to kill the cancer could damage my rectum: really, really bad. No SBRT for you sir!
My oncologist felt like we should try another systemic approach instead. For years, I have been very interested in an experimental approach called BAT (Bimodal Androgen Therapy). BAT cycles the patient between the polar extremes of supraphysiologic testosterone to nearly castrate. Clinical trials have been promising, and my oncologist is an expert. I agreed to participate in the STEP-UP trial being run out of Johns Hopkins,
The STEP-UP trial has 3 arms, two cycling between BAT and enzalutamide, and the third just enzalutamide (standard of care for me at this point). 20% chance of randomizing to the enzalutamide-only arm. But....you guessed it...that is where I found myself after the trial started: the enzalutamide-only arm. Very. very disappointing. A good reminder about trials: not everybody gets the trial med/approach.
I decided to make the best of it and see how things went with the Enzalutamide. I was not feeling very hopeful as, after abiraterone, only about 25% of men get any response and the response only lasts a few months. Last week was my fourth week on the new drug. At the end of the four weeks, my PSA test was .15. This is close to a 90% reduction in PSA! Studies have found that men in this rarified group (~5% of men who try enzalutamide after abiraterone fails) have very robust responses. Instead of a few months, they can get a few years! This is spectacular news. There are no guarantees, but the odds are in my favor for a durable remission!
No comments:
Post a Comment