Sunday, August 21, 2016

Terry Evans Discusses his Evolution as a CLL (chronic lymphocytic leukemia) Patient and Advocate

It has been incredibly busy since I returned stateside at LAX from Nairobi. Between the jet lag and catching up with work and upcoming activities for the CLL Society, I’m in desperate need of sleep!

But I have some very good news. My lab tests done the morning after I landed that had shown an ominous left shift signaling a significant infection or the start of CML or worse has disappeared as quickly as it came. My ALC is back around its sleepy normal level of about 2 and I have no immature cells that should be in my marrow hanging out in by peripheral blood. 

Also on the money side, the errors in insurance billing are being corrected, I am finally being paid and my long standing problems with my Canadian pension may be worked out. 

Once again, under reacting and watching the trend has been the motto to live by. The middle way.

Last January, Terry Evans, long-term CLL patient, and I traveled to New Jersey to tape an interview about his CLL journey starting out as a naïve patient and the experiences that led him to understand the importance of having a CLL expert on his team, and the many factors to consider if you are considering a clinical trial. We worked on this project in partnership with Haymarket Education. You can watch the video here: http://cllsociety.org/2016/08/discuss-cll-patient-journey/

TRANSLATION NOW AVAILABLE: Just an FYI, in the upper left hand corner of the CLL Society website is a “Translate” button. You can now select your preferred language to learn about CLL.

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL. This one features Dr. Furman, so attend if you can

·      September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. Dinner will be served and there is no charge to attend. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9419387

Heads Up! The CLL Society has become aware of a series of unbranded patient meetings coming up in September and October (with a few more to come in November and December). CLL patients will share their personal stories, and local CLL experts will be providing a talk on the basics of CLL. A complimentary meal will be provided and parking is free. You are welcome to bring a guest.

One member of the CLL Society will be at most meetings including these two listed below to show a brief video and give a talk about the impact support groups have had on their CLL journey. We will also have an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. We look forward to meeting you there. The first  confirmed meetings are:

·      Tuesday, September 6th in Rosemont, IL at the Chicago Marriott Suites O’Hare. More details can be found in the flyer. Access it @ http://cllsociety.org/docs/CLL_Flyer_RosemontIL.pdf

·      Wednesday, September 21st in Madison, WI at Gilda’s Club Madison. More details can be found in the flyer. Access it @ http://cllsociety.org/docs/CLL_Flyer_MadisonWI.pdf

In the meantime….
Stay strong.

We are all in this together.

Brian Koffman, MD
8/18/16

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2 Comments:

Blogger Eileen B. said...

I'm so glad to read of your 'good news'.

August 22, 2016 at 10:15 AM  
Anonymous linda draper said...

so glad you are well

August 27, 2016 at 5:25 AM  

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