Friday 24 May 2013

Research Junkie

Goodbye Keanu my multiple myeloma story


We all know the World Wide Web is a vast pool of knowledge. Everything from medicine.net.com’s  “leukemia quiz” (which I scored an embarrassing 75 per cent on),  to detailed case histories of patients and their fight against blood cancer was tantalizingly available. 
      A couple of the nurses warned me not to dive into that pool. But I couldn’t help myself. Within days after I was diagnosed I became a research junkie. I spent hours on the internet reading everything I could find out about my disease. There was a pretty standard definition: Plasma cell leukaemia (PCL) was a variant of multiple myeloma. It was a rare and aggressive disease with a poor response to standard chemotherapy. There were two forms: Primary plasma cell leukaemia and secondary plasma cell leukaemia. The secondary version occurred in patients who already had multiple myeloma. It had an even poorer prognosis than primary.
      Reading about plasma cell leukemia was like reading a ghost story. The reports all had a morbid finality to them. Only two per cent of newly diagnosed multiple myeloma patients had PCL.  Doctors in the USA saw about one case a year (one case per million of population). Because it was so rare, there were no clear cut strategies on how to treat the disease. Depending on the site I was on and depending on what factors they took into consideration, there were different formulas for how long one might live. In 2008 the prognosis was death in 2-4 months. In 2010 the median survival was listed as 8-12 months. Today, “novel therapies” and “combination therapies” where chemotherapy drugs are taken in combination with steroids, followed by stem cell transplantation, gave an overall survival rate of about 25 months. Multiple myeloma patients were expected to live an average of 62 months. Everything the doctors had in their arsenal might give me a couple of years. I could hear violins playing.
      If the disease and prognosis weren’t bad enough I had a cytogenic abnormality. It was called the translocation of 14:16. It was associated with an even poorer life expectancy. My first research backed this disheartening conclusion: Translocation t(14;16) had poor prognostic value for multiple myeloma, Avet-Loiseau H. Blood. 2010;doi:10.1182/blood-2010-07-295105, November 24, 2010.
      But researching in this day and age was like having opposing scientists sitting in your living room. Whatever side of an argument you favoured, there was always someone who threw it into doubt. Results of a retrospective study have indicated that the t(14;16) cytogenic abnormality had no prognostic value for multiple myeloma. These data are in contrast to previously published data from a small study conducted at The Mayo Clinic that indicated that t(14;16) translocation was associated with poor outcome in patients with multiple myeloma.
Guess which scientist I picked to back?

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