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Stephen’s Story

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At the time of my initial diagnosis — and not because I knew any better, because I knew nothing at all including my not-yet-announced diagnosis – my hematologist ran both a flow cytometry (to diagnose my disease) and a FISH analysis (to explore the genetics of my CLL). Though the technical information was an intellectual tsunami to absorb, not to mention the emotional wallop of the diagnosis itself, I was grateful to have the information. It helped focus my extensive Googling at the time even if I wound up zigging and zagging in my learning and unlearning of what was relevant to my condition.

To assuage my desire for cutting edge knowledge – and also, I think to reduce (or, more likely, eliminate) the flurry of emails I was sending him – my hematologist referred me to the CLL specialist Richard Furman. At the conclusion of my consultation with Dr. Furman he repeated ALL of the testing done previously plus he added a bunch more specialized lab assays, (e.g., TP53, SF3B1, NOTCH1). I was in early Watch & Wait and so neither the FISH nor any of the other specialized tests were immediately necessary, as a researcher Dr. Furman explained that he collected this data to “fill in all the cells in his spreadsheet.”

Over the course of the 3 years that I remained in watch and wait, I became an advanced novice in the various treatment options available. My learning curve was greatly accelerated by the wealth of information packed away in the CLL Society website and I was acutely aware of the need to know my FISH and IGHV mutation status in determining what treatments certain CLL patients would NOT respond to – in particular, chemoimmunotherapy such as FCR. (While I don’t have a 17p deletion and am IGHV mutated and technically would have been eligible to receive FCR, my CLL specialist does not prescribe FCR for any of his CLL patients.) Prior to treatment I received my first bone marrow biopsy and once again had flow cytometry and FISH studies performed. They confirmed the earlier studies and I was soon to start on a combination of ibrutinib and obinutuzumab. In less than a year I achieved both a complete remission and am minimal residual disease undetectable (U-MRD). So far, so good!


CLL Society - Living With CLL

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