Search
Search
About
Log in
Join
Experiences with
Myelofibrosis
Posts
Communities
457 public posts
Filter results
Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to
myelofibrosis
(MF) but later reverted to a PV phenotype.
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to
myelofibrosis
(MF) but later reverted to a PV phenotype.
Manouche
in
MPN Voice
7 months ago
Immune Responses + Autoimmune Myelofibrosis
Fristly, the post "MF reverts to PV" from Manouche possibly could be explained by the article link in the post "
Myelofibrosis
: New Guidlines..." post from William-Indo.
Fristly, the post "MF reverts to PV" from Manouche possibly could be explained by the article link in the post "
Myelofibrosis
: New Guidlines..." post from William-Indo.
LongETinUS
in
MPN Voice
6 months ago
Switched from hydroxy to anagrelide advice.
I m 73 Yr. old woman with
myelofibrosis
. After a tough year with hospital admissions due to gallstones & sepsis ( recurrent,) & 5stone weight loss, l ve been taken off hydroxy due to anaemia, & needing too many blood transfusions.
I m 73 Yr. old woman with
myelofibrosis
. After a tough year with hospital admissions due to gallstones & sepsis ( recurrent,) & 5stone weight loss, l ve been taken off hydroxy due to anaemia, & needing too many blood transfusions.
Didgeridoo2
in
MPN Voice
3 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of
myelofibrosis
.
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of
myelofibrosis
.
Manouche
in
MPN Voice
9 months ago
Amatryptiline use with myelofibrosis advice
This follows 4 admissions in 2020, when diagnosed with
myelofibrosis
of this &sepsis.1st admission was an embolism, & was left with heart failure,&clot on lung, gallstones & sepsis.Would normally remove gallbladder, but due to health changes, the anaesthetist said no, they won,t operate.
This follows 4 admissions in 2020, when diagnosed with
myelofibrosis
of this &sepsis.1st admission was an embolism, & was left with heart failure,&clot on lung, gallstones & sepsis.Would normally remove gallbladder, but due to health changes, the anaesthetist said no, they won,t operate.
Didgeridoo2
in
MPN Voice
5 months ago
re: 1500mg Hydroxyurea per day
I am a 72 year old male and was Diagnosed with early
myelofibrosis
after seeing my platelet counts over 1100 and having a bone marrow biopsy. I was put on 500mg Hydroxyurea per day and eventually increased to 1500mg per day.
I am a 72 year old male and was Diagnosed with early
myelofibrosis
after seeing my platelet counts over 1100 and having a bone marrow biopsy. I was put on 500mg Hydroxyurea per day and eventually increased to 1500mg per day.
oglesby
in
MPN Voice
5 months ago
Rebirthday
Thirteen years ago today a nurse walked into my hospital room at UCH London and hung up a bag of stem cells donated by Sarah Gardner ( a forty something mum of four) to replace my bone marrow that had been damaged by
Myelofibrosis
.
Thirteen years ago today a nurse walked into my hospital room at UCH London and hung up a bag of stem cells donated by Sarah Gardner ( a forty something mum of four) to replace my bone marrow that had been damaged by
Myelofibrosis
.
MFBMT2011
in
MPN Voice
3 months ago
FDA Grants Fast Track Designation to Selinexor for Myelofibrosis Treatment
https://www.targetedonc.com/view/fda-grants-fast-track-designation-to-selinexor-for-
myelofibrosis
-treatment
https://www.targetedonc.com/view/fda-grants-fast-track-designation-to-selinexor-for-
myelofibrosis
-treatment
Manouche
in
MPN Voice
10 months ago
Newly diagnosed
Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ago i had PV and last week was told i had secondary
Myelofibrosis
i think it is stage 1.I am not sure what all this means for me, ive seen a consultant who is going to start me on Ruxolitinib.
Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ago i had PV and last week was told i had secondary
Myelofibrosis
i think it is stage 1.I am not sure what all this means for me, ive seen a consultant who is going to start me on Ruxolitinib.
Lallybroch1
in
MPN Voice
3 months ago
folic acid
I have prefibrotic
myelofibrosis
and on hydroxycarbomide 10 x 500mg a week - platelets hover between 600-800 and am anaemic. Anyone using folic?
I have prefibrotic
myelofibrosis
and on hydroxycarbomide 10 x 500mg a week - platelets hover between 600-800 and am anaemic. Anyone using folic?
kiwitraveller
in
MPN Voice
9 months ago
haemoglobin back to normal range?
after struggling with my Primary
Myelofibrosis
for 3 years(lots of downs, symptoms, massive splenomegaly, totally blocked portal veins, on and off rux until I decided to stop for almost a year till now, lots of ligations, herpes, overweight, bone pain, night sweats, vein insufficiency, second gen covid
after struggling with my Primary
Myelofibrosis
for 3 years(lots of downs, symptoms, massive splenomegaly, totally blocked portal veins, on and off rux until I decided to stop for almost a year till now, lots of ligations, herpes, overweight, bone pain, night sweats, vein insufficiency, second gen covid
Dan39
in
MPN Voice
3 months ago
FDA Approves Momelotinib for Myelofibrosis With Anemia
https://www.onclive.com/view/fda-approves-momelotinib-for-
myelofibrosis
-with-anemia?utm_source=sfmc&utm_medium=email&utm_campaign=09152023%20breaking%20news&eKey=c3RldmVuLnNoZWFyZDU2QGNvbWNhc3QubmV0
https://www.onclive.com/view/fda-approves-momelotinib-for-
myelofibrosis
-with-anemia?utm_source=sfmc&utm_medium=email&utm_campaign=09152023%20breaking%20news&eKey=c3RldmVuLnNoZWFyZDU2QGNvbWNhc3QubmV0
hunter5582
in
MPN Voice
8 months ago
Pegasys starting dose for PMF
I have primary
myelofibrosis
since February 2021 Doctor put me on Hydroxyurea because of elevated platelets(1700). Now, because of my age(41 yrs old) want to put me on Pegasys but with a starting dose of 135 mcg/week and 500 mg Hydrea/day.
I have primary
myelofibrosis
since February 2021 Doctor put me on Hydroxyurea because of elevated platelets(1700). Now, because of my age(41 yrs old) want to put me on Pegasys but with a starting dose of 135 mcg/week and 500 mg Hydrea/day.
Goldie41
in
MPN Voice
5 months ago
Ruxolitinib not working so well
I was diagnosed with
Myelofibrosis
Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!!
I was diagnosed with
Myelofibrosis
Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!!
Searcher56
in
MPN Voice
7 months ago
Night Sweats
I have post ET
Myelofibrosis
, low risk and on no medication as yet, have just started having night sweats and am wondering if this is a problem others have had?
I have post ET
Myelofibrosis
, low risk and on no medication as yet, have just started having night sweats and am wondering if this is a problem others have had?
flog
in
MPN Voice
9 months ago
Ruxolitinib & raised cholesterol
I have been on Ruxolitinib for nearly 9 years now managing my primary
myelofibrosis
. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor.
I have been on Ruxolitinib for nearly 9 years now managing my primary
myelofibrosis
. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor.
Cazbolac
in
MPN Voice
7 months ago
Post PV Myelofibrosis - One Year Update
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
marlenablue
in
MPN Voice
6 months ago
Moving toward disease modification in polycythemia vera
Nonetheless, longer follow-up is needed to assess whether molecular responses associate with clinically meaningful outcome measures such as thrombosis and progression to
myelofibrosis
or AML » https://www.sciencedirect.com/science/article/abs/pii/S0006497123022978
Nonetheless, longer follow-up is needed to assess whether molecular responses associate with clinically meaningful outcome measures such as thrombosis and progression to
myelofibrosis
or AML » https://www.sciencedirect.com/science/article/abs/pii/S0006497123022978
Manouche
in
MPN Voice
6 months ago
US Senator Joe Lieberman died from MF
But in late February of this year, we clearly came to understand that in January 2018, when he was almost 76, his diagnosis had officially changed to
myelofibrosis
. His life expectancy with
myelofibrosis
was probably not more than five years.
But in late February of this year, we clearly came to understand that in January 2018, when he was almost 76, his diagnosis had officially changed to
myelofibrosis
. His life expectancy with
myelofibrosis
was probably not more than five years.
EPguy
in
MPN Voice
1 month ago
Fedratinib - NICE Appraisal
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of Fedratinib for the treatment of
myelofibrosis
patients with an enlarged spleen or other symptoms.
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of Fedratinib for the treatment of
myelofibrosis
patients with an enlarged spleen or other symptoms.
AndyT
in
MPN Voice
4 months ago
1
2
3
...
23
Next page
10
20
Filter results
Clear filters
Posted in
All communities
MPN Voice
429 results
CLL Support
10 results
Fight MPN
7 results
View top 10 communities
Sort by
Most Relevant
Newest