Mom On Jakafi (Page 2)

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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Hello all. My dad has mylofibrosis and we are waiting for the jakafi drug. We were told it has to be approved by Medicare and Humana and it'd be about 3 weeks- we are still waiting. He's in hospital right now with no appetite at all. Can anyone please tell me what the normal wait time was to receive the jakafi? We are beside ourselves with worry as he continues to get worse with each passing day. Please, any information or hope would help us greatly.

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Hi:
My dad started Jakafi 6 weeks ago. He gets severe Hematoma in his legs and swollen foot. Is this a side effect of the med? Where can I find the info

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Hi. I was on Jakafi for about a month. My red blood cells went down as low as 18. We have stopped the Jakafi and after transfusions we got my red blood cell count back up to around 27. It has slid back down to 23 and the doc is thinking of getting me another 2 units of blood. I will go visit the doc on Wednesday, but am reluctant to go back on the Jakafi. I was on 15 mg twice daily.

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Dr Patrik Tan is a great guy with a wonderful manner and very experienced specialist in this field. I can personally recommend him. Jakavi in Singapore is a bit more expensive than the price we were quoted in Bangkok, but then ended being refused from Bangkok Hospital anyway. DONT GO TO BANGKOK HOSPITAL FOR THIS.

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My father age 65 is suffering from primary myelofibrosis and doctor has recommeded him jakavi 5 mg. my question : do patient with myelofibrosis have high fever. If yes, do jakavi helps in lowering the fever

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I have been on jakafi for years now. it helps me. I was itching so bad until the dr. put me on jakafiyes it does help

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Hi,

I have myelofibrosis and was on Jakafi. It did not help much. I think it did mitigate the night sweats but killed my red blood cell count and I became transfusion dependent.

I underwent a stem cell transplant at Seattle Cancer Care Alliance on April 23 2014. My youngest sister was a perfect match. I am now recovering from the stem cell transplant waiting for engraftment. Seattle Cancer Care Alliance does seem to have some success in this area.

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Nick, I don't think there are any longitudinal studies on this drug yet. It has only been FDA approved in the US since 2012, I think. I started taking Jakafi in Feb. 2015 at 10 mg twice a day, however, that was quickly decreased to 5mg due to drop in platelets. I am on this site to inquire about side effects other than those documented by Incyte. I have terrible calf and foot spasms and contractions at night, which wakes me up. Any feedback is appreciated.

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I have been on Jakafi since Feb. 2015 for treatment of symptoms associated with myelofibrosis. Initially, I was placed on the same mg. doseage as your mother, but my platelets dropped to 70, and my Hem/Onc decreased me to 5 mg twice a day. I have remained relatively stable with a decrease in my RBC. My Hgb also dropped to 10.5. Yesterday I had an ultrasound of my abdomen to check the size of my spleen and other other surrounding organs. I return to my Hem/Onc. for another CBC and results of the ultrasound. Please let me know if you have specific concerns or questions. Since this drug has only been FDA approved and on the market for a few years, there are no longitudinal studies available. Guess that means your mother and I and some others are paving the way.

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Amit, I have been on Jakafi, same mg. as your father, since Mar. 2015. I have not experienced fevers, but, according to the site, many have, so it must not be uncommon.

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I just started first 5 mg Jakafi today. scared- my counts starting out are lower.

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In Feb. 2015, I started Jakafi at 10 mg. twice a day. when my platelet count dropped to 70, the Jakafi was reduced to 5mg. twice a day, and I have remained on this doseage for over a year with monthly CBC's. My biggest concern is my extremely elevated white count, but my oncologist is not that concerned since I'm doing very well overall. I have had none of the other documented side effects such as extreme fatigue or need for blood transfusions. I think myelofibrosis may have different side effects for different people. Hopefully your mother will be able to tolerate the Jakafi.

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