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Myelofibrosis
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myelofibrosis
Anyone diagnosed with mf and what are the main symptoms .Thanks.
Anyone diagnosed with mf and what are the main symptoms .Thanks.
glyndale
in
MPN Voice
2 years ago
JAK2V617F Allele Burden in Polycythemia Vera: Burden of Proof
(PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and evolution to a
myelofibrosis
(PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and evolution to a
myelofibrosis
Manouche
in
MPN Voice
1 year ago
SCT while feeling well
I have Post ET
Myelofibrosis
, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting leukaemia. I have pretty much decided I will go through with it, but know it will be very tough.
I have Post ET
Myelofibrosis
, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting leukaemia. I have pretty much decided I will go through with it, but know it will be very tough.
SRH55
in
MPN Voice
1 year ago
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New Study re: Myelofibrosis: Predictors of Anemia Response to Momelotinib Therapy in Myelofibrosis and Impact on Survival
Momelotinib ameliorates anemia in nearly half of the patients with
myelofibrosis
and may improve survival in select responders.
Momelotinib ameliorates anemia in nearly half of the patients with
myelofibrosis
and may improve survival in select responders.
PhysAssist
in
MPN Voice
2 years ago
Ferrittin level (Different Opinions)
Last Wednesday (26th July) I had my 3 monthly blood test in relation to my
Myelofibrosis
and asked for my Ferrittin level and TSATS to be checked also. The Nurse/Clinician found Ferrittin on the data base but not TSATS and was a bit baffled by the whole TSATS thing.
Last Wednesday (26th July) I had my 3 monthly blood test in relation to my
Myelofibrosis
and asked for my Ferrittin level and TSATS to be checked also. The Nurse/Clinician found Ferrittin on the data base but not TSATS and was a bit baffled by the whole TSATS thing.
SaltyUK
in
Restless Legs Syndrome
11 months ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to
myelofibrosis
.
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to
myelofibrosis
.
Manouche
in
MPN Voice
1 year ago
newly diagnosed Myelofibrosis
Hi to all Was recently diagnosed with
Myelofibrosis
Still learning about the condition and associated terms
Hi to all Was recently diagnosed with
Myelofibrosis
Still learning about the condition and associated terms
Discover59
in
MPN Voice
2 years ago
Progression Question/Experiences
Here’s the question lol, does this seem to indicate progression to
myelofibrosis
or no?
Here’s the question lol, does this seem to indicate progression to
myelofibrosis
or no?
924-924
in
MPN Voice
1 year ago
Splenomegaly in Polycythemia Vera: Its Clinical Significance and its Relation to Symptoms
Whether SPML affects
myelofibrosis
-free and overall survival (MFS and OS) is unknown. Because of uncertainty regarding these issues, we conducted a retrospective, systematic study evaluating them. Interpretation: Our unique findings are practice-changing.
Whether SPML affects
myelofibrosis
-free and overall survival (MFS and OS) is unknown. Because of uncertainty regarding these issues, we conducted a retrospective, systematic study evaluating them. Interpretation: Our unique findings are practice-changing.
Manouche
in
MPN Voice
2 years ago
Getting transfusion dependent
I have
myelofibrosis
which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis.
I have
myelofibrosis
which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis.
Rachelthepotter
in
MPN Voice
1 year ago
myelofibrosis
Has anyone had mf for a long time and does treatment stop progression, thinking about starting medication which i think is my only option Thank you
Has anyone had mf for a long time and does treatment stop progression, thinking about starting medication which i think is my only option Thank you
glyndale
in
MPN Voice
2 years ago
myelofibrosis
hello has anyone had mf for a long time and do some symptoms improve when you start treatment.
hello has anyone had mf for a long time and do some symptoms improve when you start treatment.
glyndale
in
MPN Voice
2 years ago
Recently diagnosed with Primary Myelofibrosis
Two weeks later I had more blood tests, transfusions and a bone marrow biopsy finally at the beginning of October I was diagnosed with Primary
Myelofibrosis
. Since then I've continued with weekly red blood cell transfusions to try and bring my hemoglobin levels up.
Two weeks later I had more blood tests, transfusions and a bone marrow biopsy finally at the beginning of October I was diagnosed with Primary
Myelofibrosis
. Since then I've continued with weekly red blood cell transfusions to try and bring my hemoglobin levels up.
Flyingsteamer
in
MPN Voice
2 years ago
Inflamed Thigh and Glute Muscles
I have been advised that
myelofibrosis
is an inflammatory condition, so, whilst it is not a common symptom of my condition, it is not surprising that I experience this discomfort in my thigh muscles.
I have been advised that
myelofibrosis
is an inflammatory condition, so, whilst it is not a common symptom of my condition, it is not surprising that I experience this discomfort in my thigh muscles.
TimGS
in
MPN Voice
2 years ago
Acalabrutinib + Ruxolitinib interactions
Hello I have CLL (taking Acalabrutinib ) I also have
Myelofibrosis
and my Dr might put me on Ruxolitinib..... I am Looking for interactions between both drugs. I have checked drugs.com and Epocrates Looking for someone with more info or someone taking this combination Thank you
Hello I have CLL (taking Acalabrutinib ) I also have
Myelofibrosis
and my Dr might put me on Ruxolitinib..... I am Looking for interactions between both drugs. I have checked drugs.com and Epocrates Looking for someone with more info or someone taking this combination Thank you
antonb
in
CLL Support
2 years ago
MPL mutation
I have ET, likely progressing to Post ET
Myelofibrosis
. Thanks, Shirley
I have ET, likely progressing to Post ET
Myelofibrosis
. Thanks, Shirley
SRH55
in
MPN Voice
2 years ago
Lynda Carter "Wonder Woman" funding MPN Research
Today on Instagram Lynda Carter revealed her husband's cause of death was
myelofibrosis
that transformed into AML. She is starting a partnership with City of Hope and donating her own money as well as working to raise funds.
Today on Instagram Lynda Carter revealed her husband's cause of death was
myelofibrosis
that transformed into AML. She is starting a partnership with City of Hope and donating her own money as well as working to raise funds.
Lena70
in
MPN Voice
2 years ago
ET normal range platelets.
My bloods Hb 139 wbc 9.28 Neut 2.9 Plt 299 With platelets being in normal range for a while there checking me for bone marrow transformation to
myelofibrosis
. I hope this is ruled out, will also have ultrasound,repeat JAK 2.
My bloods Hb 139 wbc 9.28 Neut 2.9 Plt 299 With platelets being in normal range for a while there checking me for bone marrow transformation to
myelofibrosis
. I hope this is ruled out, will also have ultrasound,repeat JAK 2.
Jbut
in
MPN Voice
2 years ago
December 22, 2022: Monoclonal Antibody Shows Promise for Treating CALR-mutant MPNs in Preclinical Study
“These data collectively provide strong rationale for the clinical investigation of INCA033989 in
myelofibrosis
and essential thrombocytopenia patients with CALR mutations, and a phase 1 study is planned to initiate in 2023,” Dr Reis concluded.
“These data collectively provide strong rationale for the clinical investigation of INCA033989 in
myelofibrosis
and essential thrombocytopenia patients with CALR mutations, and a phase 1 study is planned to initiate in 2023,” Dr Reis concluded.
PhysAssist
in
MPN Voice
2 years ago
pre fibrotic myelofibrosis
Could anyone help me I had a BMB nad results say I have Pre Fibrotic
myelofibrosis
changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell me about it Thanks
Could anyone help me I had a BMB nad results say I have Pre Fibrotic
myelofibrosis
changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell me about it Thanks
JeniMac
in
MPN Voice
2 years ago
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