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Myelofibrosis- GVHD graft, versus, host, disease.
Sorry for the rambling Has any one else with
Myelofibrosis
suffered a large spleen months before diagnosis? Where there any symptoms of
Myelofibrosis
similar to mine before diagnosis? Anyone in a similar situation? Thanks Gary
Sorry for the rambling Has any one else with
Myelofibrosis
suffered a large spleen months before diagnosis? Where there any symptoms of
Myelofibrosis
similar to mine before diagnosis? Anyone in a similar situation? Thanks Gary
FreemanSaviors
in
MPN Voice
2 months ago
Myelofibrosis - GVHD - graft, versus, host, disease
Sorry for the rambling Has any one else with
Myelofibrosis
suffered a large spleen months before diagnosis? Where there any symptoms of
Myelofibrosis
similar to mine before diagnosis? Anyone in a similar situation? Thanks Gary
Sorry for the rambling Has any one else with
Myelofibrosis
suffered a large spleen months before diagnosis? Where there any symptoms of
Myelofibrosis
similar to mine before diagnosis? Anyone in a similar situation? Thanks Gary
FreemanSaviors
in
MPN Voice
2 months ago
Travel Insurance
Does anyone know of any insurance companies that will cover PRE Fibrotic
Myelofibrosis
. Thanks in advance for any help or information you can give me.
Does anyone know of any insurance companies that will cover PRE Fibrotic
Myelofibrosis
. Thanks in advance for any help or information you can give me.
NannaFlo
in
MPN Voice
9 months ago
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New to Rux
Two more queries here: I'm newly diagnosed with post-ET
Myelofibrosis
and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Two more queries here: I'm newly diagnosed with post-ET
Myelofibrosis
and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Sivasi
in
MPN Voice
3 months ago
Mylofibrosis new guidelines diagnosis and prognostic
Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluation of
myelofibrosis
https://onlinelibrary.wiley.com/doi/10.1111/bjh.19164 Cheers
Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluation of
myelofibrosis
https://onlinelibrary.wiley.com/doi/10.1111/bjh.19164 Cheers
william-Indo
in
MPN Voice
9 months ago
Can I help
Hi I am Harry and have so far survived
Myelofibrosis
for 6 years. It has been a very bumpy ride with no guarantee that you will be still around next week I have been lucky to have very good medical resources that have kept me going If my experiences can help anyone please contact me Harry
Hi I am Harry and have so far survived
Myelofibrosis
for 6 years. It has been a very bumpy ride with no guarantee that you will be still around next week I have been lucky to have very good medical resources that have kept me going If my experiences can help anyone please contact me Harry
harryandliz1
in
MPN Voice
8 months ago
Anyone on Momelotinib/Ojjaara?
Since it became FDA-approved for post-polycythemia
myelofibrosis
, he has several patients who are doing very well on it, and their counts have improved vs. the Jakafi. I was just wondering if anyone on this site is on it or has any experience? Thanks so much in advance!!
Since it became FDA-approved for post-polycythemia
myelofibrosis
, he has several patients who are doing very well on it, and their counts have improved vs. the Jakafi. I was just wondering if anyone on this site is on it or has any experience? Thanks so much in advance!!
Miriammusic
in
MPN Voice
9 days 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
5 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
6 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
The study included 252 JAK inhibitor-naive patients with intermediate-2- or high-risk
myelofibrosis
with measurable splenomegaly and evidence of
myelofibrosis
symptoms. Median participant age was 69-70 years, and most were men.
The study included 252 JAK inhibitor-naive patients with intermediate-2- or high-risk
myelofibrosis
with measurable splenomegaly and evidence of
myelofibrosis
symptoms. Median participant age was 69-70 years, and most were men.
PhysAssist
in
MPN Voice
8 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
6 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
6 months ago
life insurance whilst waiting for official diagnosis
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or
myelofibrosis
. I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or
myelofibrosis
. I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
Newbie16
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
8 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
8 months ago
Age-Based Risk
Waking up one morning with a form of
myelofibrosis
doesn’t just happen. We need our docs and scientists to do better and government to fund research. Ok, off my soapbox ( as we celebrate our independence in 5 days from our friends across the pond.)
Waking up one morning with a form of
myelofibrosis
doesn’t just happen. We need our docs and scientists to do better and government to fund research. Ok, off my soapbox ( as we celebrate our independence in 5 days from our friends across the pond.)
rcan_sMF
in
MPN Voice
2 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
9 months ago
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
10 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
4 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
8 months ago
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