Meeting with Dr. Cheson and Company

Here's an Executive Summary: I thought today was an extremely positive day. I met with Dr. Cheson and his staff. The original diagnosis of CLL seems to have been confirmed. I have been offered a spot in a clinical trial Dr. Cheson is conducting and am stongly inclined to accept (motivated largely by my fear of Nurse Baca, alluded to in my very first post). I will almost definitely be going back next week for baseline tests for the trial, including another MARROW SAMPLE!!!!! YEAH!!! The actual Chemo would begin the following week.

Here's the longer version:

I left Jim and Elena's around 7:05 and arrived at the Georgetown Hospital complex by 8:00. The nav system in my Mini Cooper brought me in perfectly, so now I know that I can get there. This is important, because it looks like I'm going to going there a lot. More on that in a few paragraphs.

The staff at Lombardi was unfailingly competent, professional, and positive, starting with the lady at the reception desk all the way up to Dr. Cheson himself. (Side note: the "Lombardi" for whom the Lombardi Center is named is in fact the legendary football coach, Vince Lombardi. There was autographed paraphenalia and other football momentos in the lobby.)

I first met with Dr. Cheson's nurse-practitioner Katherine Niknia, an extremely personable young woman. She took my medical history, then gave me a much more thorough examination than I got in Southern Maryland. She checked pretty much all the lymph nodes she could get to, measuring and cataloging the really impressive ones. After she was done, I met with Dr Cheson himself, who was really a great guy. He pretty much repeated the same examination done by Katherine. I know it's wrong, but I enjoyed the examination better when conducted by the attractive young woman. Does that make me bad?

I don't know whether to be happy, proud, or scared, but I managed to impress even Dr. Cheson with the extent of the involvement in my lymph system. He used me as a training aid to show Katherine some enlarged nodes that you normally don't normally get to feel on actual patients.

Anyway, he confirmed (pending the results of the tests on the half pint of blood test I gave today) a diagnosis of CLL, and confirmed that we want to get started treating this. He also offered me a spot in a clinical trial he's running, which I will almost definitely accept.

The clinical trial is being coordianted by Damiet Smit and overseen by Dr. Cheson. The trial will run for about 12-13 months.

The trial takes the current gold standard treatment, FC (I'll fill the drug names in tonight), and adds a new drug called Revlamid. Apparently, 30%-40% of patients do not respond to FC with full reversal of symptoms. Revlamid has shown great promise in cleaning up the abnormal cells missed by FC.

I called my expert, Nurse Baca, and asked her opinion. She was strongly enthusiastic, so that pretty much seals the deal.

My schedule will be something like this:

Months 1-6: 1 full day, 4 partial days once a month getting standard FC treatment, adding Revlamid. Everything at Georgetown (This is the standard treatment for CLL).

Month 7: Revlamid alone, going to Georgetown once per week for tests

Months 8-12: Revlamid alone, going to Georgetown once per month.

I'm writing this at a Borders in Fredricksburg, where I'm getting lunch on my way back to the 4.0 offsite. I'll finish up tonight.