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Hello this is Angela, hope everyone is doing the best they can with their health.
I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?
I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?
IlGod67
in
MPN Voice
8 years ago
BMB is next for me!
Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from Jakafi to a drug in trials for my MF. Bruising and slow coagulation is a factor, but feel good and have great new doc: Catriona Jamison at UC San
Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from Jakafi to a drug in trials for my MF. Bruising and slow coagulation is a factor, but feel good and have great new doc: Catriona Jamison at UC San
andrewschorr
in
MPN Voice
8 years ago
The Jackpot at last. Jakavi approved
My dilemma is that my Haem has asked me to continue my current dose of anagrelide (4mg per day) indefinitively and commence
Jakavi
(15mg per day). It all seems so counter intuitive.. If the
Jakavi
works my platelet count will be down to nothing in no time.
My dilemma is that my Haem has asked me to continue my current dose of anagrelide (4mg per day) indefinitively and commence
Jakavi
(15mg per day). It all seems so counter intuitive.. If the
Jakavi
works my platelet count will be down to nothing in no time.
hackett
in
MPN Voice
9 years ago
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Newly diagnosed
I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a bone marrow biopsy and it is 70 to 90 percent compromised. I will be starting Jakafi on Tuesday, waiting for it to come in the mail from insurance company. I am extremely fatigued, lost 30 pounds
I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a bone marrow biopsy and it is 70 to 90 percent compromised. I will be starting Jakafi on Tuesday, waiting for it to come in the mail from insurance company. I am extremely fatigued, lost 30 pounds
Realtorlin
in
MPN Voice
9 years ago
Ruxolitinib at last
At long last I have been approved to commence
Jakavi
. Has anyone with PV and possible von Willibrands had experience of transitioning to
Jakavi
. All advice appreciated.
At long last I have been approved to commence
Jakavi
. Has anyone with PV and possible von Willibrands had experience of transitioning to
Jakavi
. All advice appreciated.
hackett
in
MPN Voice
9 years ago
pv ,mf1 ,jak2 positiv,jakavi,femal,
,first treatment phlebotomies later hu.in2015 my illness progressed:if felt more exhausted and had temperature for weeks .a second bone marrow biobsy showed pv and mf1.now it take
jakavi
and feeling better.i am63 and decided this year to stop my work as adoctor for paediatrics in order to have less
,first treatment phlebotomies later hu.in2015 my illness progressed:if felt more exhausted and had temperature for weeks .a second bone marrow biobsy showed pv and mf1.now it take
jakavi
and feeling better.i am63 and decided this year to stop my work as adoctor for paediatrics in order to have less
angelikadrschell25
in
MPN Voice
9 years ago
From PV and MF to Myloproliferative disorder?
Hello, I hope one of the experts or doctors can answer this question. I have PV & MF and taking Jakafi 25mg twice daily. I had to go to another oncologist recently who said my counts looked good so I was in a type of remission and now I'm just nyloproliferative disorder. But she said to keep taking
Hello, I hope one of the experts or doctors can answer this question. I have PV & MF and taking Jakafi 25mg twice daily. I had to go to another oncologist recently who said my counts looked good so I was in a type of remission and now I'm just nyloproliferative disorder. But she said to keep taking
fiddlelady
in
MPN Voice
9 years ago
Ruxolitinib (Jakavi) for the treatment of Myelofibrosis (MF) - Accepted for use in NHS Scotland
The SMC have announced this month that they have approved Ruxolitinib (
Jakavi
) for the treatment of MF, and therefore this medication can now be prescribed to patients via NHS Scotland, it has previously only been available to patients after a specific individual application for exceptional funding
The SMC have announced this month that they have approved Ruxolitinib (
Jakavi
) for the treatment of MF, and therefore this medication can now be prescribed to patients via NHS Scotland, it has previously only been available to patients after a specific individual application for exceptional funding
Mazcd
MPNVoice
in
MPN Voice
9 years ago
WAITING FOR MY 'GOLDEN TICKET'
Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto Ruxolitinib. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you. And
Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto Ruxolitinib. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you. And
JediReject
in
MPN Voice
10 years ago
Ruxolitinib - patient & family/carer questionnaires
We need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (
Jakavi
) to patients living in Scotland Ruxolitinib (
Jakavi
) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis
We need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (
Jakavi
) to patients living in Scotland Ruxolitinib (
Jakavi
) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Ruxolitinib (Jakavi) change to packaging
Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16th August 2013,
Jakavi
(Ruxolitinib) tablets will be packaged in blister packs, the formulation of the tablets will remain the same, it is just the packaging that has changed.
Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16th August 2013,
Jakavi
(Ruxolitinib) tablets will be packaged in blister packs, the formulation of the tablets will remain the same, it is just the packaging that has changed.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE
Further to the NICE draft guidance not recommending Ruxolitinib (
Jakavi
, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia.
Further to the NICE draft guidance not recommending Ruxolitinib (
Jakavi
, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Has anyone out there been fortunate enough to get on to the JAKAFI trials........
Joprv
in
MPN Voice
12 years ago
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