When the disease started to progress again, in 2013, I was 62 and wanted to receive treatment closer to home. I chose Surrey, BC, and was lucky enough to have Dr Jesse Shustik as my hematologist. He started me on the CyBorD regimen (cyclophosphamide, bortezomib (Velcade®), and dexamethasone) for 9 months and it worked very well.
One year later, my myeloma came creeping back and we started the same treatment protocol, however it didn’t work as well this time. I went through the 9-month protocol, and 4 months later my disease markers started climbing again. I was told that, over time, your cells get smart and can start to “dodge” the treatment. So, in September 2016, I was put on a new regimen of lenalidomide (Revlimid®) and dexamethasone. After only 2 months of treatment, my myeloma markers continued to climb very rapidly and I was feeling really terrible so I had to put a stop to this treatment – I was done. Dr Shustik scrambled, worked and encouraged me for 3 - 4 weeks (I can be stubborn) to try a new treatment that was Health Canada approved, but not yet covered (and still isn’t) by any province. Luckily for me, the drug was available through a special compassionate access program from the pharmaceutical company, but the cut-off for access to this program was by the end of December 2016. Two weeks before cut off, I was finally accepted and Dr Shustik referred me to the Burnaby Hospital with Dr Wendy Lam to administer the new drug daratumumab (Darzalex®) by infusion, along with bortezomib and dexamethasone.
What a difference the treatment made! After losing all hope one year ago, I am once again hopeful. My myeloma cell counts started to drop immediately and now I’m on maintenance treatment. The best thing is that I am experiencing practically no side effects. I don’t know why I ever hesitated trying this new treatment and I just can’t say enough good things about this “dara”. I’m now 67 years old, living with the words ‘multiple myeloma’ for 22 years, and today I can say I am one happy camper! NEVER give up HOPE!
