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[comment by Brett Hendel on 6/4/2018, copied from our old site]

Very well-written Ben. Thanks a lot for sharing. We’ve messaged about this a bit, but our time courses with diagnosis of CLL have overlapped somewhat. I was diagnosed in 2013, at age 38. This June is my 5 year mark. I too have the hemolytic anemias, and when I had my most recent one in December we had to plan for more treatment. The original plan had been chemo similar to what you received, but in the work-up they found a new mutation that rendered the chemo less effective. So I started the ibrutinib in February (for me, the side effects have been fairly minimal - so don’t stress about it too much if you ever need it). The bummer is that at the moment the next line treatment would be bone marrow/stem cell transplant or possibly CAR-T therapy, which doesn’t have great efficacy yet for CLL. And the ibrutinib has a median response time of 2-3 years. So we wait here, hoping for more new developments. And thanks for opening up about the insurance aspect of things. As you point out, the costs are staggering. I am glad you have the insurance.

I wish you the very best in all the next stages. And may you have a very long and uneventful remission!

Warmly,
Brett

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