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Hi Is Anyone On A Very New Drug Called Momelotinib Jean4
Have stage 2 myelofibrosis and just been told my spleen is enlarged to twice the size;, have enlarged liver and left kidney hardly anything left with no blood supply to it. Ruxilitinib is no longer having any effect, hence the reason for being prescribed the new drug. I have been told not to expect it to help with all my symptons but the main reason is to help the spleen. Feeling very apprehensive but my only choice for her to keep me as comfortable as she can for as long as she can
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Jean,
I also have myelofibrosis and have been taking momelotinib for almost a year. I have tolerated it well and it has kept my spleen size in check and my blood counts stable. My symptoms are not as severe as yours, however. Let me know if I can answer any questions for you.
Bruce
Jean4, ask your doctor about different therapies and you can always get a second opinion. Don't be passive. On this podcast there are experts discussing treating MPN. You are in the UK, but I'm sure you can get a zoom or webex telemed meeting with one of these experts. My wife is treated by Dr Rampal who is very knowledgeable. This isn't a time to be shy. Ask questions and advocate for yourself.
Jean4, see attached podcasts. Try reading Episode 3 First.
https://www.medscape.com/viewarticle/999594?ecd...
So so sorry for you Jean, will keep you in my thoughts, Antoinette
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