As many know I was diagnosed about 6 mo ago with ET & mild MF. I’m TRIPLE NEG. and my haem sent me to an MPN specialist at Columbia in NYC. 1st visit specialist ordered a full genetic panel, because she wanted to find MPN cause.
2nd visit was Oct 16th. The results given were flattering because it seems I’m genetically perfect, lol...but with regards to our disease, not so great. Without a mutation it seems my risk of potentially developing leukemia go up exponentially. As a triple neg I was 3.9% of MPN population. Now I’m in the unfortunate few with no obvious cause at all - less than 2%.
The most difficult thing is that the specialist said there’s nothing to do but watch and see. She couldn’t answer my questions: how long have I had this? Prognosis and potential progression? Timeline? What does near or close to normal lifespan mean?
Seems with MPNs it is so individual to each patient and studies are so limited that nothing can be accurately predicted. Yes, I’m at a much higher risk but it may take 5,10,20yrs or never. My MF may progress slowly or quickly. ( I KNOW ALL OF US HERE FEEL THE SAME FRUSTRATION 😑). To just watch and wait doesn’t seem proactive.
My real frustration was that she wouldn’t discuss options should the disease morph. Said there was no point. But for me there is. I feel less anxious if I know there are options. So if the worse happens I already have at least a mental outline and sense of control. Something we are sorely lacking with our MPNs. So information helps me adjust and pivot when needed, giving me some semblance of sanity
That’s why I so appreciate everyone on this forum. You offer not only support, but a critical information source and useful suggestions. I thank you for that...so valuable!
Any thoughts are always welcome. I do appreciate your listening. Feeling heard really helps