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Jakavi
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Anyone heard of Promedior?
I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a larger population) after promising Phase I results. It's some sort of biologic (protein?) that is indicated for fibrosis in the marrow..they are looking
I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a larger population) after promising Phase I results. It's some sort of biologic (protein?) that is indicated for fibrosis in the marrow..they are looking
Jennifer1974
in
MPN Voice
8 years ago
Ruxolitinib & GvHD
I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by
Jakavi
(Ruxolitinib).
I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by
Jakavi
(Ruxolitinib).
crapaud
in
MPN Voice
8 years ago
Just started Pegeses/Interferon
Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets are low also, I am very nervous. Any insight would be much appreciated. Thinking of all who are in this fight and wishing you all the best
Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets are low also, I am very nervous. Any insight would be much appreciated. Thinking of all who are in this fight and wishing you all the best
Realtorlin
in
MPN Voice
8 years ago
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SCT go ahead
Hi MPN friends, I just wanted to let you know that I will be starting the process of a stem cell transplant next weds 22 June. I live in France and will be having the treatment in Montpellier. I have a femal German donor 10/10 match. Words cannot express my gratitude at the gift of her stem cells. At
Hi MPN friends, I just wanted to let you know that I will be starting the process of a stem cell transplant next weds 22 June. I live in France and will be having the treatment in Montpellier. I have a femal German donor 10/10 match. Words cannot express my gratitude at the gift of her stem cells. At
Jane65
in
MPN Voice
8 years ago
Is There a Connection Between MPN Treatment and Skin Cancer?
In this Ask the Expert segment, Patient Power community member, Peggy, wrote, “How strong of a connection is there between long-term use of Jakafi and non-melanoma skin cancer? Should a patient quit taking medication?” Dr. Naveen Pemmarju of MD Anderson Cancer Center responds with a discussion of a
In this Ask the Expert segment, Patient Power community member, Peggy, wrote, “How strong of a connection is there between long-term use of Jakafi and non-melanoma skin cancer? Should a patient quit taking medication?” Dr. Naveen Pemmarju of MD Anderson Cancer Center responds with a discussion of a
mcints
in
Fight MPN
8 years ago
Jakafi
This is being tested at MD Anderson to be used to alleviate CLL symptoms like fatigue and enlarged nodes. Results in 2018. Me and my football players neck would love this. Has any ever tries this? Virginia
This is being tested at MD Anderson to be used to alleviate CLL symptoms like fatigue and enlarged nodes. Results in 2018. Me and my football players neck would love this. Has any ever tries this? Virginia
virdieblue
in
CLL Support
8 years ago
NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]
Ruxolitinib (
Jakavi
) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post polycythaemia vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Ruxolitinib (
Jakavi
) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post polycythaemia vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Mazcd
MPNVoice
in
MPN Voice
9 years ago
Hgb and transfusions
I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a longer length of time?
I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a longer length of time?
Realtorlin
in
MPN Voice
9 years ago
What the BMB Result Said
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
andrewschorr
in
CLL Support
9 years ago
Here's what the BMB said
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
andrewschorr
in
MPN Voice
9 years ago
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
9 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
9 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
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
10 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
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