A Perfect Storm

I realized that it has once again been over a year since I posted anything. I guess that is a good thing in some ways, but it really doesn’t mean that nothing is going on. It is like a moving target where I am constantly adjusting my aim. Most of this last year has been pretty uneventful, but during this last week, a number of events have happened to create a Perfect Storm.

In my last post I had restarted the drug that I had done so well on the first time. Once again, it worked well keeping me stable for about 5 months, but then my counts started going up again. So, in October of 2022, we decided (I actually proposed it to my doctor and he agreed) we added back the first drug I was taking before, hoping that the added efficacy could turn this around once again. This seemed to be working and keeping me stable until this last week. Although my blood numbers still look good, there is another test they run to find the CLL cells in the blood. Every time I go in, they run this test called a Flow Cytometry. Since October, this number has bounced around a bit, but always a low percent, which meant I was stable. Unfortunately, this week the number quadrupled, moving it to a level, that is beginning to create a cause for concern. This started a flurry of messages between myself and my medical team. What to do next. I am one of the unfortunate CLL patients that have pretty much exhausted all approved treatments. There are a couple of stopgap treatments we can try but this will only put off the need for a DIFFERENT treatment. There is one drug that is close to being approved and we put in for insurance to cover it, and they denied it once, and then again denied it under appeal. We then went directly to the drug company to try to get it under compassionate use and that was also denied. My doctor told me Friday and they are going to try once again based on my increasing disease load, but I am not holding my breath. I am just praying that I can hold out for this drug to be approved in the next several months. It has been shown to be effective in patients that have failed all the drugs that I have taken, so we are hopeful.

I had previously mentioned that I was diagnosed with Prostate Cancer in 2021, but was put on Active Surveillance, but this situation has also changed. The hope was that my PSA would stay stable for a long time. My last MRI in June of 2022 showed that suspicious areas around the prostate had remained about the same size. But since that time my PSA has been slowly rising, which caused my Urologist to request another MRI to be run this month. Unfortunately, my PSA results I got this week showed a 50% increase in the value. Not good…..This means that the MRI will almost certainly show a growth in the prostate, which will mean treatment.

This new change is the reason I would not be eligible for any clinical trial option for my CLL. In almost all Clinical Trials you cannot have another active cancer diagnosis. While I was on Active surveillance, a clinical trial for CLL would have been an option, but now this change in my prostate cancer has taken that option off the table. Now if I could remain stable with my CLL long enough to go thru a treatment for the PC, then I would once again be eligible for a CLL clinical trial, of which there are several that I might be interested in.

I am still pretty active as a CLL patient advocate and putting in time working for the CLLSociety.org. I have done a number of presentations for medical education companies, interviewed several of the top CLL doctors in the world for webinars, and am a patient advisor on a Cancer Mental Health and Wellness panel.

On the family news front, our daughter-in-law Randi finished her PhD at Berkeley, and got a job at Auburn University at the Jule Collins Smith Museum in Alabama. So, Matt and their whole family moved to Alabama in the middle of last year. Our daughter Aimee and her family had moved to Arizona a couple of years ago, and then in June of 2022 decided to move back to the cooler climate of Huntington Beach. On a sadder note, the patriarch of the Barden family, Donald Vincent Barden passed away last May at the age of 103. Don always treated me as a member of his family and he was loved and respected by many.