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Experiences with
Myelofibrosis
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Blood platelets still too high...?
My diagnosis was changed from ET to
Myelofibrosis
(CALR+) in late December 2016, and I have been taking 20mg x2 per day of Jakafi (along w/ aspirin x1 & Acclovir 800mg x2 per day), since that time.
My diagnosis was changed from ET to
Myelofibrosis
(CALR+) in late December 2016, and I have been taking 20mg x2 per day of Jakafi (along w/ aspirin x1 & Acclovir 800mg x2 per day), since that time.
socrates_8
in
MPN Voice
7 years ago
Nutrient Study Trial in US
Patients with types of MPNs including essential thrombocythemia (ET), polycythemia vera (PV), and
myelofibrosis
(MF) such as you often experience severe symptom burden including fatigue, abdominal complaints, nausea, weight loss, and constipation.
Patients with types of MPNs including essential thrombocythemia (ET), polycythemia vera (PV), and
myelofibrosis
(MF) such as you often experience severe symptom burden including fatigue, abdominal complaints, nausea, weight loss, and constipation.
socrates_8
in
MPN Voice
7 years ago
A Strange Christmas
Anyway I did it despite being still in shock with only being diagnosed with
Myelofibrosis
in November. I was so tired yesterday but that didn't matter as nobody was eating much and I could rest and booked a short break in March while I was doing just that. Happy New Year. Janet
Anyway I did it despite being still in shock with only being diagnosed with
Myelofibrosis
in November. I was so tired yesterday but that didn't matter as nobody was eating much and I could rest and booked a short break in March while I was doing just that. Happy New Year. Janet
Skye333
in
MPN Voice
8 years ago
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Newly diagnosed
I am a 65 year old female and I have recently been diagnosed with Primary
Myelofibrosis
JAK 2 I am not having any treatment but since my diagnosis and reading and watching videos online I realise I have had lots of niggling side affects for some time.
I am a 65 year old female and I have recently been diagnosed with Primary
Myelofibrosis
JAK 2 I am not having any treatment but since my diagnosis and reading and watching videos online I realise I have had lots of niggling side affects for some time.
Skye333
in
MPN Voice
8 years ago
Bone Marrow Biopsy after SCT
I read everywhere that standard practise following a SCT is to undergo a bone marrow biopsy (as a reminder my SCT was following a syndrom including
myelofibrosis
) - my post-tranplant consultants say that since all my counts are good (white, red, platelets) and my chimerism is at 99.9% it is obvious to
I read everywhere that standard practise following a SCT is to undergo a bone marrow biopsy (as a reminder my SCT was following a syndrom including
myelofibrosis
) - my post-tranplant consultants say that since all my counts are good (white, red, platelets) and my chimerism is at 99.9% it is obvious to
crapaud
in
MPN Voice
8 years ago
First Time MF Poster
Twelve months ago, following declining red blood cell counts and a bone marrow biopsy, diagnosis of
myelofibrosis
was made.
Twelve months ago, following declining red blood cell counts and a bone marrow biopsy, diagnosis of
myelofibrosis
was made.
47Robert
in
MPN Voice
8 years ago
I'm new at this website
So, he did a bone marrow biopsy a year ago and discovered I now have
Myelofibrosis
. My doctor put me on 25 mg of Jakafi 2X per day. My platelets and white cells became perfect, but I am even more anemic. I'm on weekly Procrit shots which raised my hemoglobin from 7.0 to 7.9.
So, he did a bone marrow biopsy a year ago and discovered I now have
Myelofibrosis
. My doctor put me on 25 mg of Jakafi 2X per day. My platelets and white cells became perfect, but I am even more anemic. I'm on weekly Procrit shots which raised my hemoglobin from 7.0 to 7.9.
zfatherhen
in
Fight MPN
8 years ago
FIRST LINE PV SURVEY
The study will test how good these drugs are at controlling blood counts, symptoms, side effects but importantly for the first time will test whether Ruxolitinib can reduce risk of blood clots and importantly to slow change of PV to either
myelofibrosis
or leukaemia.
The study will test how good these drugs are at controlling blood counts, symptoms, side effects but importantly for the first time will test whether Ruxolitinib can reduce risk of blood clots and importantly to slow change of PV to either
myelofibrosis
or leukaemia.
Mazcd
MPNVoice
in
MPN Voice
8 years ago
Husband With Myelofibrosis
My husband has had MF for four years and has had his spleen removed which has caused him continuing pain in his stomach. He has all the usual MF symptoms - tiredness joint pain etc. But now he has developed he has the feeling that his inside is bursting out of his body and his legs are feeling like jelly
My husband has had MF for four years and has had his spleen removed which has caused him continuing pain in his stomach. He has all the usual MF symptoms - tiredness joint pain etc. But now he has developed he has the feeling that his inside is bursting out of his body and his legs are feeling like jelly
Hidden
in
MPN Voice
8 years ago
Anyone heard of Promedior?
It was originally developed for pulmonary fibrosis but this trial is for
myelofibrosis
(wondering if it could be applicable to other mpns as well) Just curious if anyone knew anything about it. It appears all the trials are in the US.
It was originally developed for pulmonary fibrosis but this trial is for
myelofibrosis
(wondering if it could be applicable to other mpns as well) Just curious if anyone knew anything about it. It appears all the trials are in the US.
Jennifer1974
in
MPN Voice
8 years ago
Addition
I am sorry, I have Primary
Myelofibrosis
, Myelodeplastic Syndrome..
I am sorry, I have Primary
Myelofibrosis
, Myelodeplastic Syndrome..
morgan13
in
Fight MPN
8 years ago
Newly diagnoses with Myelofibrosis ( previously ET)
HI everyone. I just got the diagnosis this week and it has been a real shock. I am 47 and have had ET for 3 years. At my last check up I was anaemic which has lead to further investigations. I am due to have further tests including a BMB soon to help me understand the prognosis. I am feeling a bit
HI everyone. I just got the diagnosis this week and it has been a real shock. I am 47 and have had ET for 3 years. At my last check up I was anaemic which has lead to further investigations. I am due to have further tests including a BMB soon to help me understand the prognosis. I am feeling a bit
Mrs_Average
in
MPN Voice
8 years ago
Newbie
Last September I progressed to
myelofibrosis
and was prescribed Ruxolitinib with Aciclovir to prevent shingles. I also take Anagrelide still to control my very naughty platelets that soar at the most inconvenient times but are always quite high.
Last September I progressed to
myelofibrosis
and was prescribed Ruxolitinib with Aciclovir to prevent shingles. I also take Anagrelide still to control my very naughty platelets that soar at the most inconvenient times but are always quite high.
Wychwoodbabe
in
MPN Voice
8 years ago
My ET Has Progressed to MF: Am I a Candidate for Stem Cell Transplant?
In this Ask the Expert segment, Patient Power community member, Betty’s essential thrombocythemia (ET) has transformed to
myelofibrosis
(MF) and she wants to know, “What are the general considerations or criteria for putting patients on a stem cell transplant (SCT) list?” Dr.
In this Ask the Expert segment, Patient Power community member, Betty’s essential thrombocythemia (ET) has transformed to
myelofibrosis
(MF) and she wants to know, “What are the general considerations or criteria for putting patients on a stem cell transplant (SCT) list?” Dr.
mcints
in
Fight MPN
8 years ago
My MPN Is Stable: What Are the Pros and Cons of Starting Treatment?
Naveen Pemmaraju of MD Anderson Cancer Center responds to Patient Power Community member Mark’s question about the pros and cons of beginning
myelofibrosis
treatment to prevent progression. Listen as Dr.
Naveen Pemmaraju of MD Anderson Cancer Center responds to Patient Power Community member Mark’s question about the pros and cons of beginning
myelofibrosis
treatment to prevent progression. Listen as Dr.
mcints
in
Fight MPN
8 years ago
NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]
Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary
myelofibrosis
(also known as chronic idiopathic
myelofibrosis
), post polycythaemia vera
myelofibrosis
or post essential thrombocythaemia
myelofibrosis
only if
Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary
myelofibrosis
(also known as chronic idiopathic
myelofibrosis
), post polycythaemia vera
myelofibrosis
or post essential thrombocythaemia
myelofibrosis
only if
Mazcd
MPNVoice
in
MPN Voice
8 years ago
MPN Voice May 2016 Fundraising Update
“My Aunt is currently living with
myelofibrosis
(MF), and she suggested supporting and raising money for MPN Voice as a way of helping fund research and raise awareness.”
“My Aunt is currently living with
myelofibrosis
(MF), and she suggested supporting and raising money for MPN Voice as a way of helping fund research and raise awareness.”
Mazcd
MPNVoice
in
MPN Voice
8 years ago
Ruxolitinib approved for myelofibrosis in 2 categories
I have been to both hearings on this. The first was obvious it was going to be refused and a number of people on that team at the drug company lost their jobs afterwards. Second time around it was more positive. Prof Harrison was shut out of attending the first appraisal but not the second. I like to
I have been to both hearings on this. The first was obvious it was going to be refused and a number of people on that team at the drug company lost their jobs afterwards. Second time around it was more positive. Prof Harrison was shut out of attending the first appraisal but not the second. I like to
skodaguy
in
MPN Voice
8 years ago
Happy Forum Friday! Looking for the video associated with our latest poll? Here it is!
Srdan Verstovsek, at MD Anderson Cancer Center to find the proper support and treatment for his condition,
myelofibrosis
. Charlie’s journey led him to start his own support group in the Houston area, MPN Support Group Texas.
Srdan Verstovsek, at MD Anderson Cancer Center to find the proper support and treatment for his condition,
myelofibrosis
. Charlie’s journey led him to start his own support group in the Houston area, MPN Support Group Texas.
aking90
in
Fight MPN
8 years ago
MPN Voice March 2016 Fundraising Update
You can sponsor Cara on her Just Giving Page at http://www.justgiving.com/Cara-Fraser1
Jacqueline and John Graham – Charity Fashion Show 14th March
Jacqueline, who is taking Ruxolitinib to help relieve the symptoms of her
Myelofibrosis
, is one of the wonderful supporters who volunteered to help
You can sponsor Cara on her Just Giving Page at http://www.justgiving.com/Cara-Fraser1
Jacqueline and John Graham – Charity Fashion Show 14th March
Jacqueline, who is taking Ruxolitinib to help relieve the symptoms of her
Myelofibrosis
, is one of the wonderful supporters who volunteered to help
Mazcd
MPNVoice
in
MPN Voice
8 years ago
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