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Myelofibrosis
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What the BMB Result Said
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, bounce between 70,000 and now 80,000. Occasional purple bruising.
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, bounce between 70,000 and now 80,000. Occasional purple bruising.
andrewschorr
in
CLL Support
8 years ago
Here's what the BMB said
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, bounce between 70,000 and now 80,000. Occasional purple bruising.
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, bounce between 70,000 and now 80,000. Occasional purple bruising.
andrewschorr
in
MPN Voice
8 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
8 years ago
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Myelofibrosis
Hi all, I was diagnosed with MF last year. I had ET for 30 years before that. I was never given anything for ET. I am now on a wait and watch for MF. Is anyone else waiting and watching ?
Hi all, I was diagnosed with MF last year. I had ET for 30 years before that. I was never given anything for ET. I am now on a wait and watch for MF. Is anyone else waiting and watching ?
CeeCee123
in
MPN Voice
9 years ago
ASH2015: Live Broadcasting
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
mcints
in
Myeloma America Support
9 years ago
ASH2015: Live Broadcasting
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
mcints
in
Fight MPN
9 years ago
ASH2015: Live Broadcasting
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
mcints
in
CLL America Support
9 years ago
Live MPN Interviews and Updates from ASH
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
andrewschorr
in
MPN Voice
9 years ago
Live CLL Coverage from ASH
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
andrewschorr
in
CLL America Support
9 years ago
Live News Coverage from ASH
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
I have two of those conditions (chronic lymphocytic leukemia and
myelofibrosis
- but, because of past progress, doing well!).
andrewschorr
in
CLL Support
9 years ago
Myelofibrosis
My fiance is newly diagnosed with early
myelofibrosis
. He asked the doctor if it would affect his life span and the doctor said no. My understanding is that this is a progressive illness and having lost my dad to mf I know it's a serious condition. I'm really confused right now.
My fiance is newly diagnosed with early
myelofibrosis
. He asked the doctor if it would affect his life span and the doctor said no. My understanding is that this is a progressive illness and having lost my dad to mf I know it's a serious condition. I'm really confused right now.
maxineathersych
in
MPN Voice
9 years ago
Important opportunity to comment on NICE draft decision re Ruxolitinib for MF patients
Dear all NICE (The National Institute for Health and Care Excellence) is in the process of deciding whether to approve ruxolitinib for patients with MF (
myelofibrosis
).
Dear all NICE (The National Institute for Health and Care Excellence) is in the process of deciding whether to approve ruxolitinib for patients with MF (
myelofibrosis
).
Mazcd
MPNVoice
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 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.
Realtorlin
in
MPN Voice
9 years ago
To be classified or not with the correct MPN
After I got diagnosed with having the JAK2 mutation following my surgery for blood clots it was suggested I had either pre-fibrotic
Myelofibrosis
or Iron deficient polycythemia. I wondered how others have been diagnosed correctly.
After I got diagnosed with having the JAK2 mutation following my surgery for blood clots it was suggested I had either pre-fibrotic
Myelofibrosis
or Iron deficient polycythemia. I wondered how others have been diagnosed correctly.
MarkD6701
in
MPN Voice
9 years ago
Daratumumab Drug Trial
Would be very interested if anyone knows anything about it, My husband has
myelofibrosis
abd his current drugs have stopped working.
Would be very interested if anyone knows anything about it, My husband has
myelofibrosis
abd his current drugs have stopped working.
cheridiane
in
MPN Voice
9 years ago
Breathlessness
I live for the day: Andrew Schorr's throwaway comment about 'waiting for the next stage' struck a chord with me, carefully watching the bloods for conversion to
myelofibrosis
and keeping my fingers crossed, but I am lucky: 73, PV diagnosed five-and-a-half years ago, and keeping well.
I live for the day: Andrew Schorr's throwaway comment about 'waiting for the next stage' struck a chord with me, carefully watching the bloods for conversion to
myelofibrosis
and keeping my fingers crossed, but I am lucky: 73, PV diagnosed five-and-a-half years ago, and keeping well.
lucieboo
in
MPN Voice
9 years ago
Excited to be Meeting UK MPN folks in London
I have primary
myelofibrosis
and have taken ruxolitinib for two and a half years. Remember, if you can't make it in person, we'll stream the video of most of the in-person program live and you can watch online.
I have primary
myelofibrosis
and have taken ruxolitinib for two and a half years. Remember, if you can't make it in person, we'll stream the video of most of the in-person program live and you can watch online.
andrewschorr
in
MPN Voice
9 years ago
MPN Voice Patients’ Forum London – Friday 24th July 2015, 6 – 9 pm Watch the forum Online
Andrew, a medical journalist, was diagnosed with
myelofibrosis
in 2011 and has received treatment with Ruxolitinib since 2012, he will be moderating an interactive session at the forum as well as conducting interviews with the speakers, members of MPN Voice and patients and their guests.
Andrew, a medical journalist, was diagnosed with
myelofibrosis
in 2011 and has received treatment with Ruxolitinib since 2012, he will be moderating an interactive session at the forum as well as conducting interviews with the speakers, members of MPN Voice and patients and their guests.
Mazcd
MPNVoice
in
MPN Voice
9 years ago
Two things going on.
I just went to see my hematologist to get the results from my March BMB- it came back suboptimal for adequate evaluation - but what can be confirmed is I either have ET or primary
myelofibrosis
. My current platelet count is 793.
I just went to see my hematologist to get the results from my March BMB- it came back suboptimal for adequate evaluation - but what can be confirmed is I either have ET or primary
myelofibrosis
. My current platelet count is 793.
jeanr
in
MPN Voice
9 years ago
Ruxolitinib (Jakavi) for the treatment of Myelofibrosis (MF) - Accepted for use in NHS Scotland
MPN Voice is pleased to share with you the positive outcome for the Scottish Medicines Consortium (SMC) assessment for Ruxolitinib for MF. This is very important news for patients living in Scotland.
The SMC have announced this month that they have approved Ruxolitinib (Jakavi) for the treatment
MPN Voice is pleased to share with you the positive outcome for the Scottish Medicines Consortium (SMC) assessment for Ruxolitinib for MF. This is very important news for patients living in Scotland.
The SMC have announced this month that they have approved Ruxolitinib (Jakavi) for the treatment
Mazcd
MPNVoice
in
MPN Voice
9 years ago
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