My Roller Coaster Ride with MM
I was diagnosed 6 years ago with cells already at 5 years maturity. I was Principal of a large primary school with about 900 children and 54 staff. I lost my career, being forced to resign due to constant infections. I had thalidomide for 6 months. Attained remission. Was kept on a maintenance dose until my stem cell transplant 4 years ago. Relapsed after 2 years and had velcade, revlimid and now on a ninlarno trial. The velcade caused serious bronchial pneumonia. I required surgery. The revlimid caused multiple pulmonary emboli. I had a bleed in my lungs. Due to the fact that I had a previous round of multiple emboli after knee surgery, I was left with pulmonary hypertension.
However my main concern is that there appears little treatment left here in South Africa.
I have had many bone surgeries yet have no bone involvement or lesions. I have had many other surgeries yet show no organ involvement. I am strong yet my serum free light chains keep climbing. At diagnosis I already had serious neuropathy in both feet and cannot drive so am a hostage.
I am a fighter but this has been a very long battle.
As MM patients, we need some light at the end of our tunbel now!
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