15 Years in. New treatment seems promising.

Connect with me in a forum

I wrote my story some years ago here:
https://prostatecancer.net/forums/reoccurrence-treatment-11-years-in-my-story

Life with prostate cancer now

Since then I faithfully tracked and plotted my monthly PSA tests as I took Casodex month on/month off. My quality of life was good. I'm 75 and don't have the strength or energy I used to. I don't know how much of that was due to the Casodex and how much was just getting older.

A rising PSA

A few months ago I started seeing a slowly upward trend in my PSA numbers which normally bounced between. 0.10 and 0.35. I went in to see my urologist for my yearly visit only to discover he was retiring that very day. I was pretty unhappy with his practice anyway because you could not get anyone on the phone. So I selected another practice and waited another 2 months to get my records transferred.

When I met with the new urologist, I started showing him my spreadsheet. He stopped me and said. 'You don't have a urology problem. You have a cancer problem. I'm going to refer you to a Medical Oncologist.

A new doctor, a new diagnosis

THREE DAYS LATER, my new Dr spent 30 MINUTES with me. He had reviewed my records. I told him about the month on/off Casodex and showed him my spreadsheets and charts. HE ASKED QUESTIONS! I was very impressed. The told me about a study that was published in 2023 with Lupron tablets and XTANDI (enzalutamide). It was a three way blind study. One group got lupron tablets, one Xtandi, one both. The test period was 9 months. Both drugs together was the most effective but had the lowest quality of life. Xtandi alone had the least side effects. He recommended I start Xtandi. I told him that I was very active and quality of life was important to me. Could I continue month on/off? He agreed.

He said I should start with their pharmacy because they were adept at getting financial assistance. The drug was very expensive. The pharmacy later told me the retail cost we $35,000 A MONTH!!! But don't worry, I have good insurance and their grant people were great. This was 11/21/2024. FOUR DAYS LATER, I get a call telling my my grant was approved and the Xtandi was ready for pickup. My copay was zero! I've never had service like that in my life. My first dose was 11/27/24. My PSA on the 18th was .485.

PSA lowering with new medication

Twenty three days later I had another appointment because we were leaving for the winter. My PSA ON 12/16/24 was 0.031. This is a 93.4% drop! And the lowest mine has EVER BEEN! I was amazed and impressed. The Dr. recommended I stay on Xtandi because I had no side effects. I agreed. Twenty nine days later I had another PSA test. It was 0.10 which is considered undetectable. I am amazed! Because I'm feeling a bit more fatigued, I'm going to lay off a month and see what happens.

If I can do an intermittent treatment and keep my PSA under .300, I'll be thrilled. The question is how long will it take to climb back up. Xtandi doesn't kill cancer, it just stuns it. I can't say enough about Comprenshive Cancer Institute in Huntsville, Al.