Myelofibrosis
My husband has myelofibrosis. He has low platelets and has had 72 platelet infusions since the first of February. His cancer doctor started him on Vonjo three weeks ago, platelets are still low. Does anyone else have experience with Vonjo.
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Good morning, Anna. When I read your message, I have to tell you, I got a little teary-eyed. Your reason is my reason for wanting to live a long life! I pray every day for that! Sometimes I get frightened and Through prayer, Jesus give me peace. My granddaughters are 14 and 12 and give me such joy. So fortunate they’re only 10 minutes away. Let’s stay in touch. It was nice to see your message today. Sometimes I feel so alone! I love your name—my sister’s name is Anne. Hope you have a good day. Susan
@1pearl would you mind sharing your doctors name at City of Hope? I’ve been considering going there for a second opinion. I have Myelofibrosis and Polycythemia Vera. I’m on hydrea and right now my blood numbers are stable. My UCLA doctor as of late has been very dismissive of some of my symptoms and that’s what I would like another opinion or a change of doctors. Thank you
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.
@rivieramaya2009
One of my very long time friends is named Susan !
Your grand daughters are close to age of my twin grand sons ! My husband and I have spent lots of time caring for them since they were born!!I live 50 miles away but I stay over there for couple of days a week
! I am now on my fourth day of my lower dose of OJJAARA! I feel pretty good!
I was able to get to church on Sunday !!I missed previous Sunday because of being sick ! Susan ! I am wondering are you getting any treatment?? All of my blood numbers were below minimum below the range !
My HEMOGLOBIN WAS 96
Previously I took JAKAFI ?
How are your numbers?
Text any time! As soon as I find your POST ! I will respond , my fear is that I will not be able to take care of myself! Generally speaking, I think people do not understand what we are dealing with and how it feels to be in our bodies!
I am always here for you ! Many other people on this site understand and empathize!
I try to read about my illness and treatments available! I read other cancer centers also . Stay strong 💪 keep speaking to GOD