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March 17, 2016

I remember the day my dad told me about his health. It was in September. I called to video chat with the family because it was his birthday. The family gathered around my brother’s laptop at the kitchen table. This is their usual arrangement for weekend chats. We joked
Introduction I was trained in survey methods, statistics, and medical sociology.  I’ve been a member of the American Statistical Association for over 30 years. For 20 years, I supported the Biostatistics Branch of the National Cancer Institute, managing studies of many different types of cancer. But I never studied
I have been a member of a local CLL specific support group in Orange County, CA that I help found with three other CLL patients since its inception in 2006. Two of us founders are still very active members, meeting once a month, but sadly one has passed on
Why We Need to be Informed when Diagnosed with CLL/SLL The reasons to be an informed and proactive patient are becoming more cogent and numerous than just a few years ago. Whether we are a newly diagnosed (DX) patient or a Wait & Watch (W&W) patient approaching the need
Decision Making in CLL This is a post of mine from my blog in 2011 when I was deciding what to do about my worsening disease. I share it now almost four years for a few reasons: To remember how far I personally and treatment options in general have
Wayne Wells is a sophisticated CLL patient who was diagnosed in 2006. Scroll down to the bottom of the Patient Advisory Board list to find his bio here. In this short audio interview from the LFR’s North American Educational Forum on Lymphoma that was held in Brooklyn Oct. 2-4,
The Achilles’ Heel of Oral Cancer Meds? Adherence is defined by WHO (World Health Organization) as: “The extent to which a person’s behavior – taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed upon recommendations from a healthcare provider.” While it is stupidly obvious that no
Why the Patient’s Perspective is So Important Part 1: Whom am I? I was asked by friends to help with a campaign to ensure that the voice of informed patients be heard more loudly, more clearly and more often at large medical congresses such as ASH (American Society
CLL is too often still called the “good cancer” and all of us CLL patients rightfully hate that. No cancer is good. But perhaps the problem is more with the word cancer than the word good. We are pleased when our doctors tell us that we have the “good”