In about March 2017, I felt a little light headed at times.
I was convinced I had inherited my Mama's heart arrhythmia and went to the GP for a referral to a Cardiologist.
Well my light headedness had nothing to do with my heart but was instead the result of Multiple Myeloma (MM). I discovered that I had high levels of Para Proteins in my blood and my body was riddled with bone lesions. The most concerning of those bone lesions was in my neck, in my C2 vertebrae.
At that time the Cancer Council reported that MM had a 45% survival to 5 years.
Consequently, I determined that my initial Chemotherapy should consist of Bortezomib, Lenalidomide and Dexamethasone (rather than the PBS funded Bortezomib, Cyclophosphamide and Dexamethasone). I had to personally fund the Lenalidomide and I was shocked to find out that the Government neither provided a tax deduction nor even a net medical tax offset for the $28,000 cost.
My response to my initial Chemotherapy was great and in October 2017, I underwent an Autologous Stem Cell Transplant. Again, I responded well to the treatment. In about April 2018, I was told I was in deep remission and my understanding was that I would remain in remission for at least a few years. Well that was until late December 2018 when I learned that my MM had returned with a vengeance.
According to the latest research, my best course of action is to now take Daratumumab, Lenalidomide, Carfilzomib and Dexamethasone. Of these drugs only Dexamethasone and one of either Lenalidomide or Carfilzomib are available under the PBS. The PBS does not cover the cost of taking the drugs in combination, which the latest research shows works best.
The approximate cost for my initial treatment with Daratumumab will be about $70,000, and I may also have to pay for Lenalidomide or Carfilzomib as well.
There is now also talk of another Autologous Stem Cell Transplant and possibly an Allogeneic Stem Cell Transplant – yuk!
Thinking of you. Get well soon.