Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the time it came around I had a binder full of questions. My Husband and I spoke with him, his Fellow and Nurse for almost two hours about my disease (ET+ CALR ) and how to treat it. He agreed that Interferon (Pegasys) is the best treatment at this point. I asked him about Besremi and he said that only people with PV have this option (from insurance companies) but he doesn't prefer one over the other. So Pegasys is fine. I also asked him about the trials being done right now for the new drug that treats people with ET+CALR mutation and not only did he know everything about it, he was actually giving a presentation on it days later. Eventually he wants me to go on this drug and of course the goal of all of this is to go into remission. But I'm researched enough to know that this is a marathon and to take it all one step at at time. If anyone has any questions send them my way. We talked about A LOT. I wish I went to him when I was first diagnosed as my life could have been so different. Thank you so much to this forum for giving me the confidence to seek an MPN Specialist and providing such important information.
Side note: Just did my 5th Pegasys injection (once per week @ 90mcg) and feeling great! Getting labs next week to see where my platelets land.
MPN ET and random low leg swelling
ET - Calr what is this? 
Searching for MPN Specialist
