Hi I was diagnosed with Myelofibrosis (MF) post 4 yrs of ET, nearly 3 years ago (come July 2012). The first 6 months after Dx I don't think I really took it all in, it wasn't till I found out my dad had died of leukemia post his MF that I really started to appreciate how bad this was going to be. 2010 I took part in a phase 2 clinical trial that made me feel quite weak to start; I had to stop work for months at a time, emotionally & physically weak. I stopped the trial after 12 months due to side effects - really itchy skin, my blood counts weren't any better than before but my spleen had shrunk (and is only now getting bigger). The next 12 months were spent dealing with the itchy/stingy skin, getting dosage of Hydrea correct & slowly getting back to part-time work. Finally saw a Dermatologist Dec 2011 who prescribed 1% Menthol cream for the itch & UVB light treatment. After 30 sessions (3x week standing in UVB light box) the stinging/itching has gone!! & apart from a few minor flare ups treated with the cream everything is going well. Am still taking Hydrea daily & am down to monthly blood tests and seeing my specialist every 3 months, my last blood test shows platelets are still high - over 900! I'm feeling tired more often than not & it doesn't seem to matter how much sleep I get.
I guess I'm posting this today wondering if anyone else feels the same some days. I know I should focus on the fact that apart from feeling tired I'm okay and not dwell on what could be - but some days that's hard. I know that since my dad died in 1985 there hasn't been any real progress in treating this disease until a few years ago & since then the progress has been promising - who knows what the next 5 years could bring right, maybe the prognosis of 2-15yrs survival can be changed to a full cure - got to keep believing right :)