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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