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Second experience of a bone marrow trephine biopsy much better than first
The first one that I had was nearly two years ago at my local hospital, and it lead to my MPN -
myelofibrosis
Jak2 positive diagnosis. It was extremely painful. Not for more than a few minutes, , but there were two bouts of very intense pain that made me swear.
The first one that I had was nearly two years ago at my local hospital, and it lead to my MPN -
myelofibrosis
Jak2 positive diagnosis. It was extremely painful. Not for more than a few minutes, , but there were two bouts of very intense pain that made me swear.
Rachelthepotter
in
MPN Voice
6 years ago
Flu vaccination- intramuscular or subcutaneous aministration.Does it matter?
We would welcome any responses and especially to know what advice others with
Myelofibrosis
have been given. Thank you.
We would welcome any responses and especially to know what advice others with
Myelofibrosis
have been given. Thank you.
Fika500
in
MPN Voice
6 years ago
PV and/or ET - JAK2+ - currently asymptomatic
He said that I have MPN which could be PV, ET, or
myelofibrosis
. He seemed to have changed his initial diagnosis from just PV to MPN (the entire group). There are a lot materials in youtube.com from leading doctors in the field, and these are very informative.
He said that I have MPN which could be PV, ET, or
myelofibrosis
. He seemed to have changed his initial diagnosis from just PV to MPN (the entire group). There are a lot materials in youtube.com from leading doctors in the field, and these are very informative.
Pat032018
in
MPN Voice
6 years ago
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Jakafi
It has been used in cases of high risk
myelofibrosis
. This will be in response to the issue of both hands swelling..nausea etc, that falls under Hydrea. Has anyone been given this medication? Side effects..feel bette etc.
It has been used in cases of high risk
myelofibrosis
. This will be in response to the issue of both hands swelling..nausea etc, that falls under Hydrea. Has anyone been given this medication? Side effects..feel bette etc.
Sheryljean
in
MPN Voice
6 years ago
Acute Myeloid Leukaemia
I my husband has
Myelofibrosis
-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what type and he said the blasts were myeloid, ‘It’s not going in the right direction but it’s slow’.
I my husband has
Myelofibrosis
-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what type and he said the blasts were myeloid, ‘It’s not going in the right direction but it’s slow’.
Fika500
in
MPN Voice
6 years ago
MF transplant update - discharged from BMT unit and back home
I was diagnosed with primary
myelofibrosis
, JAK2 V617F, normal cytogenetics, at age 35. Health declined this year and decided to go for an early bone marrow transplant at age 57.
I was diagnosed with primary
myelofibrosis
, JAK2 V617F, normal cytogenetics, at age 35. Health declined this year and decided to go for an early bone marrow transplant at age 57.
Simon96
in
MPN Voice
6 years ago
Erythropoietin injections. Immature cells.
He has post PV
Myelofibrosis
. On Ruxolitinib for a year but haematologist does not think the lowering hgb is due to Rux. His letter says he has ‘a few’ immature cells which they’ll keep a close eye on. I fear that means progression?? Possibility of AML?
He has post PV
Myelofibrosis
. On Ruxolitinib for a year but haematologist does not think the lowering hgb is due to Rux. His letter says he has ‘a few’ immature cells which they’ll keep a close eye on. I fear that means progression?? Possibility of AML?
Fika500
in
MPN Voice
6 years ago
feeling rotten
I need to chat with anyone with
myelofibrosis
.
I need to chat with anyone with
myelofibrosis
.
home1970
in
MPN Voice
6 years ago
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
“We want people living with
myelofibrosis
to share this tool with their physician and fellow patients as part of a larger conversation around their treatment plan,” Michelle Woerhle, Executive Director of MPNRF. A stem cell transplant stands alone as a known cure for
myelofibrosis
.
“We want people living with
myelofibrosis
to share this tool with their physician and fellow patients as part of a larger conversation around their treatment plan,” Michelle Woerhle, Executive Director of MPNRF. A stem cell transplant stands alone as a known cure for
myelofibrosis
.
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Hydroxyurea dose! About right or too much?
Her diagnosis is
myelofibrosis
JAK2 positive. Platelet count of around or above 1000. She still has the portal vein thrombus, causing quite a bit of pain and discomfort. She is on 0.6 mg clexane twice a day now. Though no change in her symptoms.
Her diagnosis is
myelofibrosis
JAK2 positive. Platelet count of around or above 1000. She still has the portal vein thrombus, causing quite a bit of pain and discomfort. She is on 0.6 mg clexane twice a day now. Though no change in her symptoms.
jointpain
in
MPN Voice
6 years ago
I have Myelofibrosis and my white cells are 43.6
I am new at this site
I am new at this site
Chil67
in
MPN Voice
6 years ago
Looking for an alternative hematology specialist.
How little this person knows of
myelofibrosis
.
How little this person knows of
myelofibrosis
.
jointpain
in
MPN Voice
6 years ago
Good news & Better news
The fourth doctor looked at a slide of my blood under a microscope and said, “You don’t have
myelofibrosis
, you’re iron deficient anemic. Go home. Be happy.” So I did.
The fourth doctor looked at a slide of my blood under a microscope and said, “You don’t have
myelofibrosis
, you’re iron deficient anemic. Go home. Be happy.” So I did.
Comfortably_Numb
in
My MSAA Community
6 years ago
Newly diagnosed with Myelofibrosis
My husband was recently diagnosed with
myelofibrosis
jak2 negative. We are being referred to Mayo clinic. At present he feels fine. Just wondering what they may do next?
My husband was recently diagnosed with
myelofibrosis
jak2 negative. We are being referred to Mayo clinic. At present he feels fine. Just wondering what they may do next?
7jborud
in
MPN Voice
6 years ago
Prefibrotic Primary Myelofibrosis
Has anyone been diagnosed or know how quickly prefibrotic Primary
Myelofibrosis
will develop to
Myelofibrosis
. I am new here and been diagnosed couple days ago....I am trying not to panic but ending up crying all the time. Need to find some positivity in my life soon.
Has anyone been diagnosed or know how quickly prefibrotic Primary
Myelofibrosis
will develop to
Myelofibrosis
. I am new here and been diagnosed couple days ago....I am trying not to panic but ending up crying all the time. Need to find some positivity in my life soon.
Elab
in
MPN Voice
6 years ago
Enlarged liver
I was diagnosed with
myelofibrosis
4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt levels. When I was first diagnosed I had an enlarged spleen and liver but Ruxolitinib reduced them.
I was diagnosed with
myelofibrosis
4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt levels. When I was first diagnosed I had an enlarged spleen and liver but Ruxolitinib reduced them.
Cazbolac
in
MPN Voice
6 years ago
MPN JAK2+ some results today from the hematologist here in France
The hematologist reckons it is
Myelofibrosis
but either, other test results are not in or it will not be decided until 2 July by a meeting of himself and others, (didn't quite understand, being in French and Franglais) We really want to get back home to Wales as the holiday is well overrun.
The hematologist reckons it is
Myelofibrosis
but either, other test results are not in or it will not be decided until 2 July by a meeting of himself and others, (didn't quite understand, being in French and Franglais) We really want to get back home to Wales as the holiday is well overrun.
jointpain
in
MPN Voice
6 years ago
Lynn 30
I was diagnosed with High risk
myelofibrosis
/low risk Mds-5q last September.I have been on Rux until April ,but have been having 2 bags blood every 5-6 weeks,RBC at on average 74.
I was diagnosed with High risk
myelofibrosis
/low risk Mds-5q last September.I have been on Rux until April ,but have been having 2 bags blood every 5-6 weeks,RBC at on average 74.
champ30
in
MPN Voice
6 years ago
Help needed pls
Apparently I have an early stage of
Myelofibrosis
called prefibrotic Primary
Myelofibrosis
. I am really scared and confused. Why doc don’t use any medication to treat it or slow progress it. Instead I have blood test in 4 weeks and an appointment with my doc.
Apparently I have an early stage of
Myelofibrosis
called prefibrotic Primary
Myelofibrosis
. I am really scared and confused. Why doc don’t use any medication to treat it or slow progress it. Instead I have blood test in 4 weeks and an appointment with my doc.
Elab
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
A couple of hundred present but the
Myelofibrosis
break out group that could have been a massive six, was only four by the time we made it to the room. The group (left to right) had 7, 7, 2 & 2 years survival between them (missing were 6&3).
A couple of hundred present but the
Myelofibrosis
break out group that could have been a massive six, was only four by the time we made it to the room. The group (left to right) had 7, 7, 2 & 2 years survival between them (missing were 6&3).
MFBMT2011
in
MPN Voice
6 years ago
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