1. < Blood Cancers & Disorders
Profile picture for dax1million

Myelofibrosis

Posted by dax1million @dax1million, Oct 8 8:57pm

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | 15 hours ago

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

REPLY
1 reply
Profile picture for lyd0218
lyd0218 | @lyd0218 | 13 hours ago
In reply to @1pearl "@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects..." + (show)
Profile picture for 1pearl @1pearl

@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects how people feel and may make them feel short of breath too. I only showed slightly low hemoglobin on the day of my bone marrow biopsy and it miraculously improved on its own on all my subsequent labs for which I am grateful to God with my taking nothing.
You are fortunate to still get to make your decision next year on which Medicare plant to take. I haven’t had medical insurance from my work for quite a while, so I was on my husband’s and it was not helpful for what I have I have with my swollen non painful right finger joint so I took Medicare when I turned 65. I have always been well so just took an Advantage Plan. With the Advantage Plan I have currently, if I needed a bone marrow transplant, I would have it at City of Hope which I am not sure is better than UCSD which is closer. I really do not know either’s track record on bone marrow transplants for myelofibrosis. Honestly, unless I need one I am not motivated to get one. I was not aware that the mutation you mentioned that you have made transplant such a sure need in the future. I was not told mine does, so I hope that is correct. I did see a bone marrow transplant specialist from City of Hope so I would think he should know. I know he seems confused why I was sent to him but he was very nice. He made it seem like I am in a category of myelofibrosis that really is not defined but somewhere between prefibrotic myelofibrosis and the next level because pathologist graded my bone marrow fibrosis as 1-2 of 3 which really is not how it is graded. I have no symptoms but do have high platelets.
Have a good week!

Jump to this post

@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

REPLY
Profile picture for 1pearl
1pearl | @1pearl | 12 hours ago

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.

REPLY
Profile picture for hanya
hanya | @hanya | 8 hours ago
In reply to @rivieramaya2009 "Good morning, Anna. When I read your message, I have to tell you, I got a..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

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

Jump to this post

@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

REPLY
View MoreView Less
Please sign in or register to post a reply.