A gift wrapped in barbed wire...

DECEMBER 22, 2015 - I was diagnosed in March 2007 at age 55 after a routine blood test showed anemia, and follow-up tests found hyperviscosity syndrome. IgM was 62, which is 6200 in US units. Hematologist said I would need treatment in a matter of months, and we started in July with 4 rounds of plasmapheresis followed by 4 cycles of rituximab. Severe allergic reactions to first infusion, IgM flare required 3 more plasmapheresis to avoid permanent damage to my sight (severe retinopathy). I was one of the unlucky 50% for whom rituximab is ineffective.

Had four cycles of fludarabine in early 2008, which gave me 4 years of 'remission'. Tried fludarabine again - 3 cycles - but this time only lasted a year before symptoms returned. Soon after this treatment I developed chronic neutropenia, and was on neupogen injections for 18 months. I also became transfusion dependent, a situation which was alleviated 6 months later when I embarked on what was planned to be 8 cycles of cyclophosphamide, bortezomib and dexamethasone (CyBorD).

We stopped the CyBorD after 6 cycles because of increasing neuropathy in my feet, which had been present since diagnosis. The neuropathy eventually diminished to pre-CyBorD levels, and is with me still.

I relapsed almost immediately, spending another 6 months receiving transfusions every week or two. Turns out I had also developed warm auto-immune hemolytic anemia (wAIHA), a condition where my IgG marks healthy red blood cells for destruction, and the spleen carries out the execution orders. Treated with prednisone, which didn't work, then had a splenectomy, which didn't work.either.

Fortunately in December 2014 I qualified for Arm C of the Innovate clinical trial, and have been on a daily dose of three 'silver bullets' - AKA ibrutinib. It has been a miracle for me - hemoglobin in normal range, IgM under 5(00), energy, stamina and enthusiasm I haven't felt in almost 10 years. Side effects have been minimal - some cracking of skin on fingers and toes, tendency to bruise easily, slightly increased blood pressure. Oh - and the urge to climb the stairs to our apartment rather than taking the elevator after a long walk in the woods... I feel truly blessed.

I am the support group leader for WM patients in Atlantic Canada. https://nswmsupport.wordpress.com

Lance Armstrong called cancer 'a gift wrapped in barbed wire' - once you get through the sharp, pointy bits there are treasures to be found. So many things have ended up in my 'small stuff drawer', and the love and support from family and friends feeds The Force in me.