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