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Myelofibrosis
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Tamarin study update and a new study now recruiting
Vera
Myelofibrosis
, or post-Essential Thrombocythaemia
Myelofibrosis
who have failed previous treatment with a JAK inhibitor; and in patients with phlebotomy-dependent Polycythaemia Vera.
Vera
Myelofibrosis
, or post-Essential Thrombocythaemia
Myelofibrosis
who have failed previous treatment with a JAK inhibitor; and in patients with phlebotomy-dependent Polycythaemia Vera.
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?
Hi I have
myelofibrosis
, diagnosed in 2016 and I'm now being treated at the Churchill Hospital , Oxford. If anyone else with an MPN is being seen there too, and would like to get in touch, do please do send me message, or make contact via this forum.
Hi I have
myelofibrosis
, diagnosed in 2016 and I'm now being treated at the Churchill Hospital , Oxford. If anyone else with an MPN is being seen there too, and would like to get in touch, do please do send me message, or make contact via this forum.
Rachelthepotter
in
MPN Voice
5 years ago
Short videos re exciting advances from Ash 2018 re ET, PV and MF
video/cbcq7bpl-yo-ruxopeg-a-promising-novel-combination-for-mpn-associated-
myelofibrosis
/
video/cbcq7bpl-yo-ruxopeg-a-promising-novel-combination-for-mpn-associated-
myelofibrosis
/
Paul123456
in
MPN Voice
6 years ago
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Oxygen levels- is 90 too low?
My husband has post PV
Myelofibrosis
and is poorly at the moment due to a sore throat, nasal congestion with fevers, fatigue. He was assessed yesterday by haematology and ,although they couldn’t find any markers for infection, they prescribed co-amoxiclav. Chest x-ray was clear.
My husband has post PV
Myelofibrosis
and is poorly at the moment due to a sore throat, nasal congestion with fevers, fatigue. He was assessed yesterday by haematology and ,although they couldn’t find any markers for infection, they prescribed co-amoxiclav. Chest x-ray was clear.
Fika500
in
MPN Voice
5 years ago
Myelofibrosis and using medical CBD/ marijuana.
I was diagnosed with
Myelofibrosis
in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing.
I was diagnosed with
Myelofibrosis
in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing.
Boriqua
in
MPN Voice
6 years ago
Dr. Michael Grunwald ASH 2018 interview with David Wallace - Multiple topics of discussion.
We discuss multiple topics including "Risk Assessment and Treatment of
Myelofibrosis
Patients at Community Oncology Practices in the U.S." (I believe the same holds true in the UK). Click here for the interview - https://bit.ly/2TszfEB Best, David - PV Reporter
We discuss multiple topics including "Risk Assessment and Treatment of
Myelofibrosis
Patients at Community Oncology Practices in the U.S." (I believe the same holds true in the UK). Click here for the interview - https://bit.ly/2TszfEB Best, David - PV Reporter
PVReporter
in
MPN Voice
6 years ago
Raising funds across the Sahara.
Good morning Last year I posted a message to say that my youngest daughter would run six marathons in six days ,self supported across the Sahara desert to raise funds for MPN Voice ,who do such exemplary work for people like me who have been diagnosed with
myelofibrosis
and others with myeloproliferative
Good morning Last year I posted a message to say that my youngest daughter would run six marathons in six days ,self supported across the Sahara desert to raise funds for MPN Voice ,who do such exemplary work for people like me who have been diagnosed with
myelofibrosis
and others with myeloproliferative
kevinbros
in
MPN Voice
6 years ago
Myelofibrosis
My ‘crossover’ MPN has transformed to
Myelofibrosis
( confirmed by BMB) and my new consultant has decided that the only medication is Ruxolitinib. Can anyone reassure me as to its efficacy, and if they have suffered side effects..... it all sounds quite toxic.
My ‘crossover’ MPN has transformed to
Myelofibrosis
( confirmed by BMB) and my new consultant has decided that the only medication is Ruxolitinib. Can anyone reassure me as to its efficacy, and if they have suffered side effects..... it all sounds quite toxic.
skipperL
in
MPN Voice
6 years ago
Survey for the MOSAICC Study - we need your help
Help us with developing a questionnaire for the MOSAICC study which will be the world’s largest study to try to identify the cause(s) of Myeloproliferative neoplasms (MPNs) including polycythaemia vera, essential thrombocythaemia and primary
myelofibrosis
.
Help us with developing a questionnaire for the MOSAICC study which will be the world’s largest study to try to identify the cause(s) of Myeloproliferative neoplasms (MPNs) including polycythaemia vera, essential thrombocythaemia and primary
myelofibrosis
.
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Ash Conference - Peg/Ruxo Combo for MF
Early results appear encouraging https://www.vjhemonc.com/video/cbcq7bpl-yo-ruxopeg-a-promising-novel-combination-for-mpn-associated-
myelofibrosis
/
Early results appear encouraging https://www.vjhemonc.com/video/cbcq7bpl-yo-ruxopeg-a-promising-novel-combination-for-mpn-associated-
myelofibrosis
/
Paul123456
in
MPN Voice
6 years ago
ET and Mild Executive dysfunction.
I am concerned about the likeliness of my ET transforming to
myelofibrosis
, especially with my unexplained aches and pains. Thanks and happy holidays.
I am concerned about the likeliness of my ET transforming to
myelofibrosis
, especially with my unexplained aches and pains. Thanks and happy holidays.
CalrType1
in
MPN Voice
6 years ago
Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients (in the U.S.)
Thought you might find this interesting - https://www.pvreporter.com/breaking-news-on-celgenes-fedratinib-for-
myelofibrosis
-patients/ Best, David - PV Reporter
Thought you might find this interesting - https://www.pvreporter.com/breaking-news-on-celgenes-fedratinib-for-
myelofibrosis
-patients/ Best, David - PV Reporter
PVReporter
in
MPN Voice
6 years ago
Anybody here being treated in North Wales?
Though my wife is getting treatment for her
Myelofibrosis
, we are not sure how good or upto date it is. Probably contact via messaging would be best.
Though my wife is getting treatment for her
Myelofibrosis
, we are not sure how good or upto date it is. Probably contact via messaging would be best.
jointpain
in
MPN Voice
6 years ago
Very good results on RuxoPeg combo in Myelofibrosis patients (we also see similar findings in PV).
ASH 2018 interview with Dr. J.J. Kiladjian, hope you find it informative - https://bit.ly/2PNFWP8 Best, David - PV Reporter
ASH 2018 interview with Dr. J.J. Kiladjian, hope you find it informative - https://bit.ly/2PNFWP8 Best, David - PV Reporter
PVReporter
in
MPN Voice
6 years ago
Is Idiopathic Myelofibrosis cancer?
I’ve read a lot about this disease
myelofibrosis
which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I can’t find a lot of information when I research “idiopathic
myelofibrosis
” and im wondering if it is considered cancer or not.
I’ve read a lot about this disease
myelofibrosis
which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I can’t find a lot of information when I research “idiopathic
myelofibrosis
” and im wondering if it is considered cancer or not.
Actuallyclaire
in
MPN Voice
6 years ago
Daily Smokers Have a More than 3 Times Increased Risk for MPN
The types of myeloproliferative disorders include chronic myelogenous leukemia, polycythemia vera, primary
myelofibrosis
, essential thrombocythemia, chronic neutrophilic leukemia, and chronic eosinophilic leukemia.
The types of myeloproliferative disorders include chronic myelogenous leukemia, polycythemia vera, primary
myelofibrosis
, essential thrombocythemia, chronic neutrophilic leukemia, and chronic eosinophilic leukemia.
shiftzz
in
MPN Voice
6 years ago
New to the site
Hi everyone I am a 67 year old New Zealander living in London and was recently dagnosed with Prefibriotic
Myelofibrosis
. Scattered symptoms for quite some time - tingling in legs, mild headaches and ringing in ears.
Hi everyone I am a 67 year old New Zealander living in London and was recently dagnosed with Prefibriotic
Myelofibrosis
. Scattered symptoms for quite some time - tingling in legs, mild headaches and ringing in ears.
kiwitraveller
in
MPN Voice
6 years ago
Established Diagnosis of Myelofibrosis
Well, after months of not really knowing, my beautiful wife Joyce has a confirmed diagnosis. Her BMB taken 24 days ago quote "shows early changes, with reticulin fibrosis of her bone marrow, but lots of normal haemopoiesis still remains" She really is doing remarkably well, considering what she has been
Well, after months of not really knowing, my beautiful wife Joyce has a confirmed diagnosis. Her BMB taken 24 days ago quote "shows early changes, with reticulin fibrosis of her bone marrow, but lots of normal haemopoiesis still remains" She really is doing remarkably well, considering what she has been
jointpain
in
MPN Voice
6 years ago
Allow myself to introduce myself...
I haven't used the cancer word or even
myelofibrosis
when talking to them, the time will come for that conversation but hopefully it's a long way away.
I haven't used the cancer word or even
myelofibrosis
when talking to them, the time will come for that conversation but hopefully it's a long way away.
Not2bad
in
MPN Voice
6 years ago
I'm new here! This is my Story...
Last week I was diagnosed with Idiopathic
Myelofibrosis
. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why.
Last week I was diagnosed with Idiopathic
Myelofibrosis
. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why.
Actuallyclaire
in
MPN Voice
6 years ago
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