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

Discussion
Comment receiving replies
Profile picture for 1pearl @1pearl

Hi @lyd0218 ,

Thanks for your message. Sure, I would be happy to share with you the doc I saw through Kaiser who works for both City or Hope and Kaiser with schedule the rotates monthly as to where he works. He was very nice, listened to my concerns, and answered mine and my husband’s questions. I have no symptoms now, but he shared what I should watch for. I am blessed to still have no symptoms for which I am very thankful to God. His name is Joshua Mansour and he is actually a bone marrow transplant specialist as Kaiser does not have MPN specialists. I am in no need of a bone marrow transplant at this time he told me, but he doesn’t have a crystal ball to tell me if I will need one in the future.
Please share what your experience has been with docs through UCLA. I was considered changing my Medicare plan during open enrollment so I could see a MPN specialist through UCSD as I am not near any other places I am aware of that have them. I really do not want a video appointment as I prefer to meet docs in person. Maybe I would have a different opinion if I had any symptoms.
Hope your week is going well.

Jump to this post


Replies to "Hi @lyd0218 , Thanks for your message. Sure, I would be happy to share with you..."

@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