u/Turbulent-Movie-4545

Okay I’m trying to make a list to the questions that I need to ask to the general hema I’m seeing (well he’s not an expert on mpns he’s working on benign stuff) but that’s what I have for now. Will ask for a referral for a specialist. I have been in the rabbit whole of my life expectancy… I am genuinely so sad it seems I don’t have that long… idk how I could make a peace with it. I couldn’t sleep for a week.

I am tagging MF but actually I am pre-MF as per biopsy concludes on how the cells look like so not only because of the rituculin. It was graded as mf1 and says pre fibrotic/early mf on the note.

I’m calr1 (burden is 19%) platelets over 1000, I’m 35F.
My hemoglobin, wbc and RBC are within the range. Spleen size wasn’t measured with an ultrasound, but it wasn’t palpable. I don’t meet everything for pre-mf either, ldh wasn’t measured. I acquired von Willebrand also…

I don’t know if I’m ET or pre-MF myself if that makes sense.

As interferons might modify the disease I want to try it, but there’s a shortage in Canada it seems. Otherwise, my insurance pays for pegasys, for besremi it says it needs special approval. Before biopsy the resident doctor had told me she’d prescribe me with hydroxue (?) but I feel that’s not disease modifying but it could help me to lower my platelets much faster.

Note: they did advance genetic testing no other mutations were found other than calr1. Cytogenetic test says also female chromosomes only.

1. do you think my diagnosis ET/pre-MF matter at this point?
2. I’m being seen by a resident and a regular hema that doesn’t work for mpn cases how can I advocate myself for an MPN specialist in Canada? They told me this was manageable but it was before the biopsy.
3. pre-MF is different than MF, I wonder if I could do something before it goes down the MF path.
4. I’m very scared and have health anxiety
5. I want to have a child in the future (if I may) and if I have a long prognosis I’m not very keen on oral chemo long term.

Please share your thoughts.