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In early 2006, a square dancing friend of mine told me that he had recently been diagnosed with CLL. He subsequently approached me at a dance to say that it might be a good idea if there was a place where CLL patients could talk with each other. I immediately thought about a CLL specific support group since one of my “hobbies” is starting small local clubs and organizations. I called the Leukemia & Lymphoma Society and got their agreement to accept us as an LLS Group. We started advertising in local oncologists’ practices and the rest is history! Our group services Rockland, Westchester & Orange counties in New York, and Bergen county in New Jersey.
Having been in existence for 11½ years, Brian Koffman tells us that we are the oldest CLL-specific Support Group in the USA, and probably in the world.
We run seminars periodically at which CLL specialists Drs. Richard Furman, Anthony Mato, Nicole Lamanna, Jacqueline Barrientos and Alan Skarbnik have participated.
On a personal note, I celebrated my 25th anniversary as a CLL patient in late December 2016, having been diagnosed in 1991. I am 17p deleted and IGVH unmutated. My first treatment in 1993 was 8 months of Chlorambucil, the only drug available at the time. IT GAVE ME A REMARKABLE 17 YEAR REMISSION! Then we had a couple of not very successful attempts with Chlorambucil + Rituxan. In December, 2012, I entered a clinical trial with CAL101, which is now Gazyva. Two months later, after having a very good response re: my lymphadenopathy, I developed a near fatal case of pneumonitis, which caused me to go off the drug. On April 1, 2013, I started another clinical trial – this time with Ibrutinib (Imbruvica) – which I have been on very effectively since that time.
Originally published in The CLL Tribune Q4 2017.