Questions to ask at my first appt.

[Spectabilis]

Hi All,

I am 38 and was recently diagnosed with JAK2+ and Primary Myelofibrosis. I have my first appointment with a Dr at UCSF. What are the most important questions I should ask? Thank you in advance!

[Simon96]

Hi Amber,

Welcome to the group.

I was diagnosed with Primary Myelofibrosis when I was 35. I am now 56. I am also JAK2+ like you.

Sorry, I do not have any great questions for you to ask at your first appointment but thought I would write to wish you the best for it. It would be nice if you could get someone to go with you.

The MPN world has changed tremendously over last couple of decades. Every year brings more advances and more hope.

Cheers, Simon

[Ebot]

Hi. Hopefully others with MF might respond directly to your question - as a general rule with MPNs asking about treatment options, symptom burden and alleviation, disease progression and prognosis is always helpful. And do look at the info on MPN Voice if you haven’t already done so. However, what I wanted to say is definitely look at the presentations from yesterday’s Living With MPN day in London. They are all due to be made available online via the MPN Voice website. There was a lot of useful discussion about MF, prognosis and future treatments. The information was embedded in the general presentations so you might need to set some time aside to watch them all! And do look at the session on how the bone marrow functions. It’s really useful. Good luck.

[Mazcd Partner MPNVoice]

hello and welcome to our forum, this information on our website might help you at your appointment:

mpnvoice.org.uk/living-with...

Good luck, Maz