Sunday, November 16, 2014

Imbruvica (Ibrutinib) Day Five, and CLL Networking

Dave started the Imbruvica (Ibrutinib) five days ago. So far the main side effects have been mild nausea and extreme fatigue. Nothing else seemed to change, good or bad, until yesterday afternoon, when we noticed that the lymph nodes in his neck seemed a little smaller.

These kind of blow-by-blow symptoms are mainly for the benefit of other people with CLL. Although we started this blog for family and friends, we soon became aware of the on-line network for CLL (Chronic Lymphocytic Leukemia.) Which is a lifesaver, sometimes literally. Check the sidebar >>> for our favorite links.

This disease is common enough in the general population to warrant interest from the bio-research industry: the National Cancer Institute says that this year (2014) there will be 15,720 new cases of CLL diagnosed and 4,600 deaths from CLL.  About 120,000 people in the US are living with CLL, according to the Leukemia & Lymphoma Society. And the National Institutes of Health estimates that 2% of the population has the condition but are undiagnosed. And yet, it can be maddeningly difficult to get knowledgeable medical care - not only for the main diagnosis, but for all the crazy secondary problems that crop up, due to the peculiar gene mutations in CLL, and a compromised immune system. MD Anderson estimates that 15% of Leukemia patients were misdiagnosed before coming to the cancer center.

Anecdotally, I can say that it's more common than not, to have (non-CLL) doctors just brush off your symptoms, act like they're no big deal and actually tell you that "it'll go away on its own" (like a sinus infection that has lasted for years. Or tonsil/throat/ear/breathing problems that make it hard to sleep- one doctor told Dave that "you're not fit, you need to exercise more.") It's enough to make you feel a little crazy. Until you start reading these blogs by other people with the exact same stories. Suddenly, you realize you're not alone - there are other people out there, dealing with the same issues.

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