The sun is shining on me and my CLL

Time for an update.

Just some random notes.

1.  My current status

• I had a biopsy of two neck lymph glands performed on Friday.  I should hear results this week.  The results might confirm that I have Richter's Transformation, a much more aggressive and diffiuclt version of CLL that requires separate treatment before the underlying CLL can be treated.
• I went to Ohio State University Medical Center two weeks ago to consult with Dr. John Byrd, an authority on ibrutinib, a promising biologic treatment that doesn't require chemotherapy. He became concerned that I had the Richter's Transformation, and ordered a PET scan.  The results of the PET scan indicated a need for a biopsy, but we couldn't stay in Columbus long enough for the biopsy to be performed there, so we had to schedule it through Dr. Parikh at Mayo.
• Prior to going to Ohio, I had contacted Dr. Byrd's office because the FDA hadn't approved ibrutinib for first-line treatment of CLL.  He arranged for me to see him and be advised about entering a clinical trial which would give me state of the art access.  I informed Dr. Parikh about this offer on the 4th of March, and he concurred with that action.
• On the 5th of March we found out that the FDA had approved ibrutinib for first-line treatment, which meant I would be eligible for standard treatment with Dr. Parikh without going to Ohio, but he encouraged me to go to Ohio anyway for a second opinion.  Dr. Parikh is apparently a specialist in Richter's Transform, but hadn't pursued a PET scan with me as I wasn't presenting a set of symptoms that almost always go along with a change from CLL to Richter's.

I am able to sleep pretty well, despite the operation which included a repair of an umbilical hernia which the surgeon considered a threat to any treatment plan indicated by the results of the biopsy.

Sara and I have spent money we don't have and exhausted our sense of well-being in pursuit of a diagnosis and treatment for the CLL.

I have a lot more to say about this process from a patient's point of view but I need to keep this note to a factual basis for now.

Thanks for your interest.

You might note that in the photo of a blue barn taken on our trip to Ohio, the sun in fact is not shining.