On a crisp, cold Saturday morning—one when you might put off the weekend chores to walk in the park, I chose to attend the Lymphoma Research Foundation workshop held in Brooklyn, New York. And so did more than 250 people seeking to learn more about one of the many types of lymphoma. I was struck by the diverse audience of information seekers—young adults to octogenarians, all hoping to learn another bit of information about their illness or for their family member. Some attendees were novices eager to grasp concepts about diagnostic tests and treatment types, while others were quite learned, anxious to hear about results from clinical trials.
Mutual respect and words of wisdom
I was fortunate to meet John Balan, the founder of the CLL (chronic lymphocytic leukemia) Information Group. I noticed him before a breakout session started. He was engaged in a conversation with the speaker, Richard Furman, MD. The doctor was listening intently, smiling in response to Mr. Balan’s comments. I was awed by their relationship, which appeared to be one of mutual respect.
Dr. Furman began his talk by saying he very much wanted the session to be open and inviting us to ask questions. The information he shared and the slides he showed were highly technical, and yet he did an excellent job breaking down the science for all of us. He used analogies to explain and reinforce the chronic nature of CLL. When Dr. Furman referred to a slide showing the complex CLL intracellular microenvironment, he focused on the advances being made to develop targeted therapies for a specific "road" on the "superhighway" of cellular communication. The rest of the image was a backdrop for Dr. Furman to express his genuine excitement and hope for the future to develop even more drugs directed at a specific intracellular target. The audience did not need to focus on the details of the PI3K or Btk gene; rather, we focused on Dr. Furman’s sincerity and honesty. When asked how scientists know what to attack in the microenvironment, Dr. Furman showed both his bewilderment with the science and his enthusiasm for the advances of 2 drugs he is currently studying in clinical trials.
Lymphoma experts share their knowledge and compassion
The first half of the day included talks by 3 leading oncologists: Owen O’Connor, MD, PhD; Steven Horwitz, MD; and Jeremy Abramson, MD. Each of their presentations was enlightening as I listened intently and wavered back and forth between the thoughts - Do I listen and try to take in the information and Do I scurry to write notes. Thankfully I already knew some of the information being shared, so I could sit back and listen. This allowed me to apply what I was hearing to ponder questions such as “How have treatment options improved?" and “What do newer therapy options mean for those making a treatment decision?” Yet there was so much more to learn about lymphoma that I also quickly wrote notes, trying to take in the doctors' thorough and clear presentations. Their commitment to quality of life and quality of care was apparent in their presentations. As with Dr. Furman, these 3 physicians answered thoughtful audience questions that demonstrated the extensive patient experience.
Each doctor took additional time to talk with the long line of people whose questions were more specific to their personal situation or who did not want to speak in public. When a person is faced with a life-threatening chronic illness, the myriad of questions seem never ending. How reassuring to have time with a renowned expert.
Saturday I learned a great deal about follicular lymphoma and chronic lymphocytic leukemia and the changing treatment landscape. As Dr. Abramson said, “Clinical trials are the engine of medical progress,” and thanks to trial work in lymphoma, people have reason to be hopeful. Thank you to the Lymphoma Research Foundation for holding such an informative meeting.
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Ide Mills, LCSW
Senior Vice President, Health Education