Ashtin, I heard from my specialist. The mutations I have are thought to make the disease more aggressive. But he also reminded me that, like everything with MPN, nothing is a definite. Until my blood decides to take a course in one direction or another, he doesn't know if it will change my options for treatment. My blood right now is very MILDLY affected, even though I have a positive bone marrow biopsy, 5 blood mutations, a cerebral blood clot that won't go away (over 19 mths now), miserable headaches, bouts with itching, silent migraines, etc. So I am labeled MPN-Unclassified. But since I am such an anomaly, he now wants my blood checked every 30 days so he can keep tabs on me. My blood has been slightly out of whack for several years. No doctor ever mentioned it. They only found my MPN because I was admitted to the hospital with the blood clot, and then everyone started running a massive amount of specialty bloodwork. There's probably a lot of people out there with MPN that have no idea it even exists. So right now I'm not seeking any MPN treatment until my numbers start to erode. And all my docs agree. Hopefully Ropeg will still be an option for me. This is such a weird disease. Rocks your world when you get diagnosed, but so unpredictable.

June, That must be so reassuring for you, to know that your hematologist has you on the right treatment!

I am taking Hydroxyurea and low dose aspirin as prescribed by my hematologist/oncologist. My biggest question of the MPN specialist was if there was another way to treat my PV. He agreed with everything my doctor was doing.

I was glad to find this thread on genetic mutations. I just found out I have several mutations. I will take to my hematologist at next appointment and considering making an appointment to see a MPN specialist. I have PV, an enlarged spleen, but Phlebotomy every 6 weeks has seemed to keep my elevated rbc/HCT in check. If anyone hears any better course of action than “wait and watch,” please let us know. I want to know what to watch for to know I’m progressing. Thx

Are. you bringing BMB results with you? If not he/she may want to order one, they like to have one in the beginning of your disease if possible to have something to compare to as one progresses. If one has been done I would ask what does my results show you and what would you suggest for treatment at this time? If no BMB I would ask, should I have one now? Otherwise I would ask what, if any type of treatment should I be on at this time.