Mom On Jakafi

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deenyc Says:

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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1
Linda Says:

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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Verwon Says:

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:/­/­www.medschat.com/­wiki/­Ruxolitinib/­

Have there been any improvements?

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3
carol Says:

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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4
carol Says:

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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5
carol Says:

is your mum on this drug for mylofibrosis

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6
Crystal Says:

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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CAROLANNW Says:

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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lizzy Says:

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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9
lizzy Says:

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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10
CAROLANNW Says:

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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Crystal Says:

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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pete Says:

Dr. Srdan Verstovsek, MD Anderson Cancer Center

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13
DEE11 Says:

Dr Mesa mayo clinic inArizona.The MPN .support group and LLS website has alot of info.How does one afford this med.Mine is on hold trying to get on incyte program,But my husbands pension puts us in a higher than 30 k a year that is reguired by many

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14
Lizzy Says:

thanks all for the info!! I'm trying to get my dad on trial in Taiwan now.. but the doctor said that my dad has heart problem that has to be cured first, so they still put him on hold and still the application takes long as well here. Hopefully we can get it soon.

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15
Mong Says:

Hi, my mum needed transfusion every month before she change her oral medicine from thalidomide to lenolidomide (revlimid), and now after taking it, it has improved a lot that she does not required tranfusion anymore for past 7 months and her spleen has reduced from 7cm to 3cm and is still reducing. Her RBC has also increasing every month. I would suggest you or your love one to try it if you haven't.

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16
Nick Says:

Hi, my mom in law is diagnosed myelofibrosis and she has taken lelonidomite and thalidomite, but she is not seem better (spleen still growing and more frequent blood tranfussio). This happened until 2 weeks ago, after she took Jakafi, her spleen size decrease and red blood cell seem ok and she is the first patient in singapore hospital whose taken this drug, i guess. I've just wondering what is the side effect on long term or short term after taking this drug.

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17
Lizzy Says:

hi where in singapore hospital did you exactly get Jakafi? I've been trying for my dad.
Thanks

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18
Nick Says:

Hi Lizzy, try at Mount Elizabeth hos w/ dr Patrick Tan. Lead time for the drug almost 1 month, cause hos doesn't stock the drug yet.

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19
Len Says:

Doctor Ellen Richie. New York Presbyterian hosp. See google. 212-746-2098

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20
Phil Says:

Hi Guys. I am my third day of taking 15mg of Jakafi twice daily to mitigate myleofibrosis spleen swelling and night sweats. It seems to be working. I hope to regain my flight physical in about 30 days. Jakafi just mitigates symptoms. The cure of myleofibrosis will take a bone marrow transplant.

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