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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
Everyone… read more
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… read more
Hi There, Does Anyone Know If There Is Shortage Of Pegasys Alpha2 In USA?
Yes, that's about it. Thank you. Hope it will be back sooner.
I
Hi. I Was Diagnosed With ET 2 Years Ago. I Am Finding The Fatigue Is Getting Worse & Affecting My Lifestyle. What Do Others Do To Help This?
I’m asking this question as well for my husband
Hi There! What Sort Of Specialist Would I See To Rule Out An Enlarged Spleen (not My Hematologist?)
I changed my doctor (hematologist/oncologist) earlier this year to someone more specialized with MPN. She recommended I get an updated ultrasound to check the size of my spleen (which I did earlier… read more
Could A Little Yardwork Before Hemocratic Blood Draw Raise Levels Or False Readings
Did yard work before blood draw,Hemotoligist visit and possible phlebotomy. Hemocratic was 46, blood pressure low she asked if I wanted to come back next week or drink fluids and crackers to raise blood pressure. She left it up to me. I drank fluids , blood pressure went up and I got phlebotomy . I was wondering if I made the right choice
My blood pressure is often too low for phlebotomy and I have to do as you did. But my hematocrit is also usually too high. Other than usual housework, I really don't do anything very strenuous
HU Dosage Was Increased. Now I Am Iron Anemic And Fatigue Really Increased. I Have PV And Can't Take Iron. Any Ideas Anyone ?
PV 3 1/2 years ago. Take Hydroxyurea. Fatigue becoming quality of life issue.
Good Morning! I Developed A New Symptom On This Journey. Last Evening, My Whole Mouth Was In Great Pain. Every Tooth Included.
Thank you so much, Eugene and Tia. The pain has lessened a great deal, and I am grateful.
Which MPN Symptom Surprised You The Most?
Thank you, Janet, good to know 🌸
Do Any Of You Have Bleeding From Lower Colon? My Colonoscopy Looked Normal. The Gastro Doctor Had Zero Knowledge Of MPNs, So No Help There.
I have been having these bleeding episodes from lower GI tract. Mostly bright red blood and enough that I would need a pad to manage it. Pretty much the same level of blood as from a serious nasal bleed
More recently I could find dried blood (probably bled throughout the night) and a couple of times blood clots
No hemorrhoids and no anal fissures they can trigger, no constipation, the colon seems normal under a very fast colonoscopy.
The doctor performing colonoscopy had no idea of what… read more
kisses, hugs back😘
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