I'm 42, married with six children, and I live in Australia.
In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well.
After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia.
After that, I stopped the aspirin and was just watchful and waiting.
In 2017, after recurring migraines and burning in my feet, I started on pegylated interferon. It worked well and lowered my platelets.
In early 2022, after an increase in my platelets and symptoms (extreme fatigue, 15kg lean body weight loss, night sweats, bone pain, and abdominal pain), a repeat marrow test on August 18, 2022, identified Post ET myelofibrosis. Genetics were CAL-R type 2 with ASXL1.
I started Jakavi in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression.
After my platelets dropped below 1000, I stopped the Pegasys.
My doctors have recommended that I start thinking about a stem cell transplant (SCT); however, the best donor they can find is a 9/10 unrelated donor.
I'm currently participating in the INCA033989 CAL-R antibody trial but also on Hydrea to try to control my platelets. My platelets are still around 1.8 million.
Symptom-wise, I still struggle with fatigue, constant nausea and abdominal discomfort, brain fog, and am battling to maintain my weight and trying not to lose any more muscle.