Sharon and I hope you are well in this New Year of 2023. In Sacramento, we have survived a series of severe weather-related storms knocking down scores of trees and causing widespread power outages. For the first 10-days of January we were without power for five of them. We have resided in our Land Park home for 40-years and never experienced anything like this.

I want to share my medical update with you. I continue on my clinical trial of one, now in my third cycle of the medication, Pirtobrutinib. Just after Christmas I had my follow up at the Fred Hutch Cancer Center. This included blood testing and CT scans. The blood tests were good showing the treatment was suppressing my white blood cell production within my bone marrow.

The scans were encouraging. The enlarged lymph nodes in my neck are no longer seen. Honestly, we are not sure if it is a result of the medication or the radiation treatment I received to my neck this past October. At any rate, a good sign. The cancer lymphoma in my liver and kidney are smaller by millimeters in size. As an example, if one of these was 3cm in size this past October, they are now listed as 2.7cm. This does not sound like much, however, in 2-months’ time the trend is positive.

My next set of scans will be in March and from that we will have two points-in-time of response to therapy. Given those results, we hope to extrapolate when, and if, these lesions will resolve. The option for a bone marrow transplant is still on the table, pending progress with this current treatment.

We who have chronic illnesses grab onto any thread of hope. At times the threads weave into a lifesaving rope. That is our goal.

Larry and Sharon

In our world of discord, be it political, social, financial, racial, or anti-semitism, there is still compassion in our society.

Today, I signed consent for my clinical trial of one, and late this afternoon picked up the medication at the Fred Hutch pharmacy.

Through my cancer journey I have survived and lived through many a physical ailment – bowel obstruction, spinal nerve root compression, chronic neuropathy in my feet. I feel that none of that compares to the emotional pain I have endured this past month. The crush of the decision that I was disqualified from the “cure” (or even the flip side effect of death while trying for the cure) was more than an anvil dropping from the sky. Then the weeks of waiting for my liver to heal, and the subsequent push and pull between my doctors and the drug company to approve my trial.

All in all, the tremendous power of your caring and prayers have brought Sharon and I through these honestly depressing days. Tonight I begin the new therapy. I have one more treatment tomorrow and a blood test on Monday after which we will return to our home in Sacramento.

Over the next several months we will gage the response to this treatment. Frankly it can go one of three ways – no effect, suppression of the lymphoma, or remission of the lesions which will then allow me to try for the bone marrow transplant and the cure. It is unspoken which way we are praying for.

We will keep in touch. In the meantime, a heartfelt thanks to all.

Larry and Sharon

For patients who have CLL there is a treatment named “Watch and Wait.” I was in that treatment for the first 3-years after my diagnosis. What it really means is “Wait and Worry.” I feel like I am in that mode right now.

Since our arrival in Seattle we have been worrying. This past week, I received an IV treatment of a drug that fights CLL and other similar leukemias named Obinutuzumab. We also had a clinic visit with our doctor who said they are working hard on trying to obtain the compassionate use for the drug named pritobrutinib.

In the meantime, the lymphoma bump on my neck continues to get bigger. The two treatments I have had here did not seem to calm that down. We thought we might, in the best case scenario, have the new drug this week. However as the week comes to a close, no drug, just worry.

To address my enlarging lymph node, today we had an appointment with the Radiation Oncology department. In layman’s terms, that means blasting my neck with radiation to slow the lymphoma tumor’s growth. I have received this type of radiation before, in the summer of 2019 just prior to my CAR T treatment. Because this would be my second time, for a relapse, the dose of radiation will need to be greater than the last time. As there is only so much radiation one part of the body can receive, I would prefer not to do this if at all possible.

So we wait and worry. If the new drug shows up at our doorstep sometime next week, we can hold off on the radiation. I am waiting to hear as there seems to be some kind of hang up in coordination between the clinic and the drug company. Believe you me, I am leaning on my contacts to make this happen. My doctor here is very committed and responsive. We all want this.

We hope the worry will be put on a temporary hold sooner than later. In the meantime we wait.

Larry and Sharon