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DiscussionPrimary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?
Blood Cancers & Disorders | Last Active: 14 hours ago | Replies (25)Comment receiving replies
Replies to "Hi @hanya I think tomorrow you’re having blood tests and an appointment with your PA! Just..."
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@loribmt
Hello Lori ! You are so awesome! So grateful that you are there for us!
Yes I just returned from my ONC/Hem PA appointment
Blood test not great but some numbers improved by a hairline! MY RED BLOOD CELLS STILL ONLY 3.4 but hemoglobin hairline higher
Platelets only 100 so up !
Staying on 150 mgs of
OJJAARA MOMELOTINIB
TAKING ZOFRAN THREE TIMES A DAY ! Eat less
I have a history of acute vitiligo so I went and got treatments just in case my vestibular nerves are injured by previous severe vomiting ! Constant nausea and dizziness was a big burden!!! It’s calmed down several days now so will continue the OJJAARA !
The PA WAS CONCERNED ABOUT MY INTERUPTING MY DRUG DURING THE ACUTE NAUSEA!!
My PA BROUGHT UP THE BMT ! I had stated that I would not go that route !
I have only been on MOMELOTINIB FOR TWO AND HALF MONTHS !
She was concerned THAT MY BLASTS HAVE INCREASED FROM 4 to 7 percent! So now I will learn about BLASTS !!
The pharmaceutical company published that six months of OJJAARA NEEDED TO SEE HOW ITS WORKING!
I told her that I believe that the med is helping because now I can walk up the stairs without getting exhausted extremely out of breath!! I feel that is a good indication from my body !
I hope s as nd pray that all of our connect friends will be well enough to celebrate this Christmas!! Our lives have been greatly impacted by these serious rare illnesses!! I h as ve accepted the fact that I can not physically do what I used to even six months ago! It depresses me but I continue to stay positive so I can spend time with my precious grandsons !! I will not surrender yet !! There is still life in me , so I will rest ,
Then get up and get going !
Friends ! There is a quote
“REST IF YOU MUST , BUT DO NOT QUIT “
BLESSINGS TO EVERYONE
HANYA