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Experiences with
Myeloproliferative neoplasm (MPN)
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Phylogenetic reconstruction of myeloproliferative neoplasm reveals very early origins and lifelong evolution
« The mean latency between JAK2V617F acquisition and clinical presentation was 31 years (range 12-54 years). Rates of clonal expansion varied substantially (<10% to >200% expansion/year), were affected by additional driver mutations, and predicted latency to clinical presentation. Driver mutations and
« The mean latency between JAK2V617F acquisition and clinical presentation was 31 years (range 12-54 years). Rates of clonal expansion varied substantially (<10% to >200% expansion/year), were affected by additional driver mutations, and predicted latency to clinical presentation. Driver mutations and
Manouche
in
MPN Voice
4 years ago
Thrombocytosis
Has anyone with a
myeloproliferative
neoplasm
had some of the symptoms I have been getting : -Slight Webb looking rash on belly -Dizzy, spacey and fatigue usually before rash. Some mood changes. -Pain in arms and armpit 3. Does E.T diagnosis always come from a positive gene mutation test?
Has anyone with a
myeloproliferative
neoplasm
had some of the symptoms I have been getting : -Slight Webb looking rash on belly -Dizzy, spacey and fatigue usually before rash. Some mood changes. -Pain in arms and armpit 3. Does E.T diagnosis always come from a positive gene mutation test?
Bbthy
in
MPN Voice
4 years ago
MYELOFIBROSIS (MF) for Patients - A Talk by MESA & SCHERBER
:D Yes, and now the talk on Myelofibrosis (MF), as the third in the series of talks by Dr Ruben Mesa & Dr Robyn Scherber concerning the three (3) more classical
Myeloproliferative
Neoplasm
(MPN) conditions.
:D Yes, and now the talk on Myelofibrosis (MF), as the third in the series of talks by Dr Ruben Mesa & Dr Robyn Scherber concerning the three (3) more classical
Myeloproliferative
Neoplasm
(MPN) conditions.
socrates_8
in
MPN Voice
4 years ago
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Treating Asymptomatic Patients With Polycythemia Vera
Spivak, MD, discusses treating patients with polycythemia vera, which is a type of
myeloproliferative
neoplasm
that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Spivak, MD, discusses treating patients with polycythemia vera, which is a type of
myeloproliferative
neoplasm
that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Manouche
in
MPN Voice
4 years ago
Critical illness claim
Hi I have
myeloproliferative
neoplasm
, has anyone successfully claim on their critical illness cover with legal and general company , as I’m having difficulty with understanding the term and conditions on my policy and don’t want to ring them and open a can of worms until I know for sure Kim
Hi I have
myeloproliferative
neoplasm
, has anyone successfully claim on their critical illness cover with legal and general company , as I’m having difficulty with understanding the term and conditions on my policy and don’t want to ring them and open a can of worms until I know for sure Kim
Kimmy53
in
MPN Voice
4 years ago
MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups
Hi everyone, For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people with MPNs, survivors of MPNs, and their families and carers. They are closed groups so only members can see posts. Some of you may already know
Hi everyone, For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people with MPNs, survivors of MPNs, and their families and carers. They are closed groups so only members can see posts. Some of you may already know
Wentry
in
MPN Voice
4 years ago
Living with Myeloproliferative Neoplasm - ET Jak2+ and Chronic Neuropathic Pain
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
Hidden
in
MPN Voice
4 years ago
MPN QoL Study Group - MPN and COVID-19 Survey
The Mayo Clinic and
Myeloproliferative
Neoplasm
Quality of Life Study Group https://www.mpnqol.com/ are conducting an international research survey to investigate the experiences of MPN patients during the COVID-19 pandemic.
The Mayo Clinic and
Myeloproliferative
Neoplasm
Quality of Life Study Group https://www.mpnqol.com/ are conducting an international research survey to investigate the experiences of MPN patients during the COVID-19 pandemic.
Mazcd
MPNVoice
in
MPN Voice
4 years ago
The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View
Best wishes Steve
[i]The
Neoplasm
Landscape: A Patient’s Eye View[/i] Authors: Cheryl Petruk .
Best wishes Steve
[i]The
Neoplasm
Landscape: A Patient’s Eye View[/i] Authors: Cheryl Petruk .
socrates_8
in
MPN Voice
4 years ago
Just thought to share
https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-
Myeloproliferative
-
Neoplasm
-MPN-Patient.pdf
https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-
Myeloproliferative
-
Neoplasm
-MPN-Patient.pdf
neela2020
in
MPN Voice
5 years ago
Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020
neoplasm
(ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone or no treatment at all only need to follow the government’s general advice (see link above) and are not considered high risk. 2.Patients over the age
neoplasm
(ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone or no treatment at all only need to follow the government’s general advice (see link above) and are not considered high risk. 2.Patients over the age
Mazcd
MPNVoice
in
MPN Voice
5 years ago
COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020
Below we summarise recommendations from UK experts in relation to management of MPNs during the current COVID-19 outbreak: 1.There is currently no evidence that patients under 70 with a
myeloproliferative
neoplasm
(ET or PV) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or
Below we summarise recommendations from UK experts in relation to management of MPNs during the current COVID-19 outbreak: 1.There is currently no evidence that patients under 70 with a
myeloproliferative
neoplasm
(ET or PV) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Are mcmillan really aware of mpn's?
I replied that I had a
myeloproliferative
neoplasm
and she asked me what it was, to which I replied a rare blood cancer. She then proceeded to call the second lady over who was with her and asked her if she had heard of it and replied no.
I replied that I had a
myeloproliferative
neoplasm
and she asked me what it was, to which I replied a rare blood cancer. She then proceeded to call the second lady over who was with her and asked her if she had heard of it and replied no.
Tico
in
MPN Voice
5 years ago
Diagnosis for insurance
I tried to explain it comes under the unbrella of a
myeloproliferative
neoplasm
which the operator didn't understand? He asked me if I had essential thromobythaemia and I said my diagnosis is essential thrombocytosis?? The chap was not very helpful stating he wasn't medically trained?.
I tried to explain it comes under the unbrella of a
myeloproliferative
neoplasm
which the operator didn't understand? He asked me if I had essential thromobythaemia and I said my diagnosis is essential thrombocytosis?? The chap was not very helpful stating he wasn't medically trained?.
Camelian
in
MPN Voice
5 years ago
Polymyositis and MPN link
I have not been aware of the condition since then although I am a chronic pain patient and have had a
Myeloproliferative
Neoplasm
- Essential Thrombocytosis Jak2 + for many years. I suspect there is a link between Polymyositis and the MPN. Does anyone know anything about a link? God Bless Anna
I have not been aware of the condition since then although I am a chronic pain patient and have had a
Myeloproliferative
Neoplasm
- Essential Thrombocytosis Jak2 + for many years. I suspect there is a link between Polymyositis and the MPN. Does anyone know anything about a link? God Bless Anna
Hidden
in
Myositis UK
6 years ago
Good news to finish the week on
Source: https://b-s-h.org.uk/about-us/news/new-prognostic-tool-provides-step-change-in-
myeloproliferative
-
neoplasm
-care/ dated 15 Oct 2018
Source: https://b-s-h.org.uk/about-us/news/new-prognostic-tool-provides-step-change-in-
myeloproliferative
-
neoplasm
-care/ dated 15 Oct 2018
Ovingite
in
MPN Voice
6 years ago
Make People Notice in September, blood cancer awareness month
How many times have you told people that you have a
myeloproliferative
neoplasm
to be met with a blank stare!
How many times have you told people that you have a
myeloproliferative
neoplasm
to be met with a blank stare!
Mazcd
MPNVoice
in
MPN Voice
6 years ago
I'm nervous about my Fibroscan next week
Three & half years ago I was diagnosed with non-cirrhotic portal hypertension due to blood clots (
Myeloproliferative
Neoplasm
). I'd had a fibroscan then with a score of 4.6. However, this Easter I developed obstructive jaundice and my liver readings were up.
Three & half years ago I was diagnosed with non-cirrhotic portal hypertension due to blood clots (
Myeloproliferative
Neoplasm
). I'd had a fibroscan then with a score of 4.6. However, this Easter I developed obstructive jaundice and my liver readings were up.
MarkD6701
in
British Liver Trust
6 years ago
Guidelines Myeloproliferative Neoplasms and Articles of Interest
utm_source=TrendMD&utm_medium=cpc&utm_campaign=JNCCN_TrendMD_0 2018 Guideline for Patients
Myeloproliferative
Neoplasm
https://www.nccn.org/patients/guidelines/content/PDF/mpn.pdf Molecular diagnosis of the myeloproliferative neoplasms: UK guidelines for the detection of JAK2 V617F and other relevant
utm_source=TrendMD&utm_medium=cpc&utm_campaign=JNCCN_TrendMD_0 2018 Guideline for Patients
Myeloproliferative
Neoplasm
https://www.nccn.org/patients/guidelines/content/PDF/mpn.pdf Molecular diagnosis of the myeloproliferative neoplasms: UK guidelines for the detection of JAK2 V617F and other relevant
Hidden
in
MPN Voice
6 years ago
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
Click here http://www.mpntransplant.com/ to check it out Created by Zhenya Senyak, editor of MPN Forum, and an MF patient, the tool is the collaborative work of a
myeloproliferative
neoplasm
taskforce from around the world.
Click here http://www.mpntransplant.com/ to check it out Created by Zhenya Senyak, editor of MPN Forum, and an MF patient, the tool is the collaborative work of a
myeloproliferative
neoplasm
taskforce from around the world.
Mazcd
MPNVoice
in
MPN Voice
6 years ago
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