March 17, 2016

March 17, 2016

365 Days of CLL: From Scientist to Caregiver

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

March 17, 2016

Reluctantly Studying CLL Since 2012

This is the story of my reaction to my husband being diagnosed with chronic lymphocytic leukemia at the age of 64. And being treated at age 67. And being treated again at age 68. I will share how I reacted to his diagnosis initially, how I went about seeking

March 17, 2016

The Value Of A Support Group

A lot of communal wisdom around the table. And support and local knowledge about providers and facilities. And joys. And heartbreaks.

March 17, 2016

Need To Be Informed

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 of treatment (TX) we can enhance the quality and length

March 17, 2016

Waiting For Perfect Knowledge?

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:

March 17, 2016

Why Attending Meetings Is Important

In this short audio interview from the LFR’s North American Educational Forum on Lymphoma that was held in Brooklyn Oct. 2-4, 2015, Wayne shares why he attends live patient educational forums such as this and what he gets out of these meetings.

March 17, 2016

Medication Adherence

Adherence to oral cancer medications is not a one-person solution – it requires a team effort. Asking questions of our healthcare team and educating ourselves can help us be adherent.

March 17, 2016

Patient Perspectives

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

March 17, 2016

Good Cancer

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”

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