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Experiences with
Myelofibrosis
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Lost my Haematologist to Covid19
Coronavirus: 'Greatly respected and loved' hospital doctor dies https://www.bbc.co.uk/news/uk-england-kent-52578715 I have been with Dr Shafi for under 2 years but he has been an amazing support to me and my family as we came to terms with my diagnosis of
Myelofibrosis
.
Coronavirus: 'Greatly respected and loved' hospital doctor dies https://www.bbc.co.uk/news/uk-england-kent-52578715 I have been with Dr Shafi for under 2 years but he has been an amazing support to me and my family as we came to terms with my diagnosis of
Myelofibrosis
.
MrDeanC
in
MPN Voice
4 years ago
Relaxation podcasts for people with Myeloproliferative Neoplasms (MPNs)
The podcasts have been produced for people with MPNs, by Paul, who is a psychologist and hypnotherapist and also a MPN patient, diagnosed with
Myelofibrosis
(MF).
The podcasts have been produced for people with MPNs, by Paul, who is a psychologist and hypnotherapist and also a MPN patient, diagnosed with
Myelofibrosis
(MF).
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Transfusions
(I have
Myelofibrosis
and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus is great.
(I have
Myelofibrosis
and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus is great.
skipperL
in
MPN Voice
4 years ago
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So scared of having a stroke!
I am 39yr old female with ET CALR positive and have had a BMB that showed grade 2
myelofibrosis
. My platelets at last check (Dec19) were 1190. I am not on any medication, not even aspirin. I have 44% Factor Von Willebrand (whatever that is?)
I am 39yr old female with ET CALR positive and have had a BMB that showed grade 2
myelofibrosis
. My platelets at last check (Dec19) were 1190. I am not on any medication, not even aspirin. I have 44% Factor Von Willebrand (whatever that is?)
May2019
in
MPN Voice
4 years ago
MPN News for treatment primary myelofibrosis, post-PVMF, Post ET-MF and Primary myelofibrosis
The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary
myelofibrosis
(PMF) and post-polycythemia vera–related
myelofibrosis
(post-PV MF), and post-essential thrombocythemia–related
myelofibrosis
The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary
myelofibrosis
(PMF) and post-polycythemia vera–related
myelofibrosis
(post-PV MF), and post-essential thrombocythemia–related
myelofibrosis
mammared
in
MPN Voice
4 years ago
I have been recommended by my consultant to try EPO injections to counter my low red blood cell count. Has anyone had this treatment for MF?
Myelofibrosis
Myelofibrosis
Jimmyh29
in
MPN Voice
4 years ago
LDH levels and myelofibrosis
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. I’ve tried to find information
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. I’ve tried to find information
Cja1956
in
MPN Voice
4 years ago
Diagnosis Update
My ET Jak2 positive was upgraded to Prefibrotic
myelofibrosis
after having a bone marrow biopsy some months ago. I opted for Peg interferon Alfa and am coping really well on it. Platelets are now around the 290 mark from just under 1000!
My ET Jak2 positive was upgraded to Prefibrotic
myelofibrosis
after having a bone marrow biopsy some months ago. I opted for Peg interferon Alfa and am coping really well on it. Platelets are now around the 290 mark from just under 1000!
ajdolly
in
MPN Voice
4 years ago
COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020
Patients with
myelofibrosis
and those taking ruxolitinib have a weakened immune system and severe infections from other viruses have previously been reported in this patient group.
Patients with
myelofibrosis
and those taking ruxolitinib have a weakened immune system and severe infections from other viruses have previously been reported in this patient group.
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Myelofibrosis and travel insurance.
Anyone with
Myelofibrosis
, who has had transfusion,been successful obtaining travel insurance. I’m longing to take my granddaughter to Orlando to Disney world.Several attempts with various agents have all been negative. Thanks.
Anyone with
Myelofibrosis
, who has had transfusion,been successful obtaining travel insurance. I’m longing to take my granddaughter to Orlando to Disney world.Several attempts with various agents have all been negative. Thanks.
Mysi
in
MPN Voice
4 years ago
Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020
government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
We will try to summarise some relevant information
1.Patients with a myeloproliferative neoplasm (ET, PV or
myelofibrosis
government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
We will try to summarise some relevant information
1.Patients with a myeloproliferative neoplasm (ET, PV or
myelofibrosis
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Combined ruxolitinib and pegasys therapy for MF and PV gives great results. Danish phase 2 study Jan 2020 ( ruxopeg)
Ruxolitinib And Interferon-Α2 Combination Therapy For Patients With Polycythemia Vera Or
: A Phase II Study.
Ruxolitinib And Interferon-Α2 Combination Therapy For Patients With Polycythemia Vera Or
: A Phase II Study.
Rachelthepotter
in
MPN Voice
4 years ago
New Need Advice please
My grandfather had
myelofibrosis
. I am not comfortable just waiting an seeing what happens wondering if I should get second opinion and possibly see Dr who specializes in MPNs. Any advice would be wonderful thanks
My grandfather had
myelofibrosis
. I am not comfortable just waiting an seeing what happens wondering if I should get second opinion and possibly see Dr who specializes in MPNs. Any advice would be wonderful thanks
chefwife8
in
MPN Voice
4 years ago
Ongoing Research Poised to Add Options for Myelofibrosis Treatment
Imetelstat has already gained fast track designation by the FDA in
myelofibrosis
and myelodysplastic syndrome. It appears to have the ability to reduce the need for transfusions.
Imetelstat has already gained fast track designation by the FDA in
myelofibrosis
and myelodysplastic syndrome. It appears to have the ability to reduce the need for transfusions.
socrates_8
in
MPN Voice
4 years ago
Happy New Year to all
She confirmed my suspicions that I had progressed from ET to
myelofibrosis
and I finally feel I’m getting the proper care now. Happy New Year to all! 🎉🎉🎉🍷 Best wishes, Cindy
She confirmed my suspicions that I had progressed from ET to
myelofibrosis
and I finally feel I’m getting the proper care now. Happy New Year to all! 🎉🎉🎉🍷 Best wishes, Cindy
Cja1956
in
MPN Voice
5 years ago
A Clinical Trial of CK0801 (a New Drug) in Patients With Bone Marrow Failure Syndrome (BMF)
Patients enrolled in this study will all have been diagnosed with treatment refractory bone marrow failure syndrome (which includes aplastic anemia, myelodysplastic syndrome, or
myelofibrosis
).
Patients enrolled in this study will all have been diagnosed with treatment refractory bone marrow failure syndrome (which includes aplastic anemia, myelodysplastic syndrome, or
myelofibrosis
).
JLS1
in
Advanced Prostate Cancer
4 years ago
New treatment options
https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-subgroup-of-patients-with-
myelofibrosis
Mesa: It’s an exciting time in MPNs without a doubt. I would break it down into 2 advances. The first is in patients with ET and PV.
https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-subgroup-of-patients-with-
myelofibrosis
Mesa: It’s an exciting time in MPNs without a doubt. I would break it down into 2 advances. The first is in patients with ET and PV.
Paul123456
in
MPN Voice
4 years ago
Bone Pain
I have Prefibrotic
Myelofibrosis
. It is not what I would describe as painful just very uncomfortable and prevents me from sleeping well.
I have Prefibrotic
Myelofibrosis
. It is not what I would describe as painful just very uncomfortable and prevents me from sleeping well.
kiwitraveller
in
MPN Voice
5 years ago
PV question
Today the dr has decided to refer me for a bone marrow biopsy and I’m now terrified they’re looking for
myelofibrosis
. Has anyone else been in this position? I’ve only just come to terms with PV. Otherwise I feel ok....any advise appreciated
Today the dr has decided to refer me for a bone marrow biopsy and I’m now terrified they’re looking for
myelofibrosis
. Has anyone else been in this position? I’ve only just come to terms with PV. Otherwise I feel ok....any advise appreciated
MJoye
in
MPN Voice
5 years ago
Inrebic and myelofibrosis
As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the last month I have felt so fatigued and weak, it has affected my quality of life. I work a lot from bed now and rarely go out except with my partner
As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the last month I have felt so fatigued and weak, it has affected my quality of life. I work a lot from bed now and rarely go out except with my partner
Cja1956
in
MPN Voice
5 years ago
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