← Return to Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

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Profile picture for lyd0218 @lyd0218

@1pearl my UCLA doctor is very nice but when I selected him we did not know I have myelofibrosis and polycythemia Vera. It was confirmed with the bone marrow biopsy. He is an oncologist/hematologist but doesn’t specialize in MPN’s. My last 2 visits with him he has been very dismissive of my complaints about episodes of fatigue, night sweats and pain. Maybe those issues are just age related I am 71. My bloodwork is relatively stable at this time which is great. But, maybe a doctor that specializes in MPN’s would look at it differently as some levels are high, some low etc… I’ve looked at some doctors at City of Hope in Duarte, CA also Cedar Sinai and Stanford. But if I can get an appt in Duarte that is where I feel may be the best place to get at least another opinion. There are also a couple of MPN specialists at UCLA but wasn’t sure about that since I already have a doctor there just in a different place.
It is all just a lot to digest!
I pray you continue to do well and I am very thankful I have regular Medicare and a supplement. It does allow me options

Lynda

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Replies to "@1pearl my UCLA doctor is very nice but when I selected him we did not know..."

@lyd0218
My personal experience
The symptoms you mentioned I had and suffered from them ! I had PV POLYCYTHYMIA VERA FOR MANY YEARS! NOW ITS MOVED TO MF MYELOFIBROSIS! I would
Look FOR ANOTHER DOCTOR WHO SPECIALIZES IN THESE ILLNESSES! YOUR DOCTOR SHOULD NOT
DISSMISS YOUR EXPRESSED SYMPTOMS!!
You DESERVE BETTER CARE AND THIS DOCTOR IS NOT FOR YOU!! Do NOT BE SHY OR AFRAID TO GET A GOOD DOCTOR ! Every ONE HERE IS PULLING FOR YOU ! Good luck! STAY STRONG