Mom On Jakafi (Page 2)
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My mom was recently (two weeks ago) put on Jakafi, 10 mg twice daily. Her red blood cells went from 10.5 to 9.9...something like that. I am concerned it's the jakafi as i know that was something we were told to possibly expect. Just wondering if anyone has been on this long term (from the study) or even short term and how they are feeling?

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Dr. Srdan Verstovsek, MD Anderson Cancer Center

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Glad to hear that your husband is doing better, I hope the anemia gets better. My mo-inlaw is doing better too, her platelet count is usually low but w/the medication, it has gone up quite a bit, which is actually opposite of what the side effects says it will do. Her spleen has also gone down quite a bit-within the first week she had great results.

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HI LIZZY, HAVE YOU TRIED TO GET YOUR DAD ON A CLINICAL TRIAL, I KNOW A LOT OF COUNTRIES ARE NOW DOING TRIALS FOR THIS DRUG.

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And can anyone recommend a doctor in America? I will take my dad to America if the Jakafi is only available there.
Please share some info.. thanks

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Hi.. My dad is 70 years old and he's diagnosed with myelofibrosis and he has enlarged spleen too which makes him really hard to do his daily activities. The doctor recommended him to take JAKAFI. We lives in Australia. Do you guys know how to get this medicine outside US?

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HELLO CRYSTAL, YES MY HUSBAND FEELING MUCH BETTER, HIS SPLEEN WE THINK HAS DECRESED IN SIZE, EATING WELL AND GAINING SOME WEIGHT. HE IS STILL HAVING PROBLEMS WITH ANEMIA AND HAVING TRANSFUSIONS. COMPARING HIS HEALTH FROM THIS TIME LAST MONTH IS FANTASTIC AND NOW DOING MOST OF THE THINGS HE WAS ABLE TO DO BEFORE THIS HORRIBLE THING STARTED TO TAKE HOLD. HE STILL HAS SOME WAY TO GO, WE ARE SEEING THE HEMOTOLIGIST NEXT WEEK, POSSIBLE SHE MAY ADJUST HIS DOSAGE TO HELP THE ANEMIA. HE IS ON 20MGS TWICE A DAY AT THE MOMENT. HOPE YOUR MUM SEES THE SAME POSITIVE RESULTS. PLEASE KEEP US POSTED.

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How is your husband doing? I am concerned about this medicine, as it has been prescribed to my mo-in-law. She has Polycythemia vera. She is 58 years old, & has an enlarged spleen.

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is your mum on this drug for mylofibrosis

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HI, CANT YOUR DAD GET ONTO A CLINICAL TRAIL FOR THIS DRUG. MY HUSBAND IS ON A TRIAL AND IS FEELING SO MUCH BETTER, HE HAS WEEKLY BLOOD TRANSFUSIONS WHICH HE WAS HAVING BEFORE STARTING THE MEDICATION. HOPEFULLY THIS WILL IMPROVE ONCE THE MEDICATION TAKES HOLD. THATS WHAT WE WERE TOLD. HOPE YOUR DAD CONTINUES TO IMPROVE.

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MY HUSBAND STARTED TAKING RUXOLITNIB 3 WEEKS AGO. HE HAS BEEN AND STILL IS HAVING BLOOD TRANSFUSIONS EVERY WEEK, HIS LEVELS ARE RISING SLOWLY. HE IS FEELING A LOT BETTER. HE IS ON A CLINICAL TRIAL HERE IN SPAIN. HE WAS REALLY ILL BEFORE STARTING THE DRUG WITH AN ENLARGED SPLEEN AND BAD GOUT. THINGS SEEM TO BE GOING IN THE RIGHT DIRECTION THANKFULLY. MY HUSBAND IS 7O YEARS OF AGE. HOW OLD IS YOUR MUM?

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Yes, these types of side effects are listed as being very common when using this medication, which contains Ruxolitinib as the active ingredient.

Some other side effects may include dizziness, hematoma, weight gain and herpes zoster.

https:/­/­rxchat.com/­wiki/­Ruxolitinib/­

Have there been any improvements?

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My dad went on the drug December 20,2011. All levels are dropping, but he feels so much better. Eating great, less night sweats and more energy. Transfusions have increased and the cost per month is outrageous.

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I have been on clinical trial 2 yrs for myelofibrosis and wanted to know if anyone's health insurance is paying for ...

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