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A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Paul123456
in
MPN Voice
5 years ago
Myelofibrosis
I have been considering willing my body to science. Does anyone know if the medical community is doing any research on MF?
I have been considering willing my body to science. Does anyone know if the medical community is doing any research on MF?
USSpurdy
in
MPN Voice
5 years ago
Fresh Update on Manifest Trial (June 3, 2019)
https://www.globenewswire.com/news-release/2019/06/03/1863298/0/en/Interim-Data-for-CPI-0610-in-MANIFEST-Clinical-Trial-Showed-Signals-of-Clinical-Activity-in-
Myelofibrosis
-Patients.html
https://www.globenewswire.com/news-release/2019/06/03/1863298/0/en/Interim-Data-for-CPI-0610-in-MANIFEST-Clinical-Trial-Showed-Signals-of-Clinical-Activity-in-
Myelofibrosis
-Patients.html
Aneliv9
in
MPN Voice
5 years ago
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Jakafi
Diagnosed with
myelofibrosis
on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
Diagnosed with
myelofibrosis
on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
USSpurdy
in
MPN Voice
5 years ago
Hepatic Encephalopathy (HE) Advice for Newbie
At my last appointment I was informed the transplant was probably too risky due to complications caused by
Myelofibrosis
(MF) and Portal Vein Thrombosis, so it looks as if they are just going to keep me on Rifaximin indefinitely.
At my last appointment I was informed the transplant was probably too risky due to complications caused by
Myelofibrosis
(MF) and Portal Vein Thrombosis, so it looks as if they are just going to keep me on Rifaximin indefinitely.
paul1
in
British Liver Trust
5 years ago
Myelofibrosis
Hi everyone, hope your all doing well. Just a quick question has anyone applied for pip ? My friends keep saying I should because of the fatigue. But I’m really 🤔 Hope your all enjoying this beautiful weather. Happy Easter to you all xx
Hi everyone, hope your all doing well. Just a quick question has anyone applied for pip ? My friends keep saying I should because of the fatigue. But I’m really 🤔 Hope your all enjoying this beautiful weather. Happy Easter to you all xx
lynda1ann
in
MPN Voice
5 years ago
Hello - how to get message across to drs.
I was diagnosed with ET in October,
Myelofibrosis
in January. Had a stroke last July which led to the diagnosis. Hard to know which condition causes symptoms. Often lose colour - grey is my new blusher, and feel like blood pressure is dropping (although it isn’t).
I was diagnosed with ET in October,
Myelofibrosis
in January. Had a stroke last July which led to the diagnosis. Hard to know which condition causes symptoms. Often lose colour - grey is my new blusher, and feel like blood pressure is dropping (although it isn’t).
Jlah
in
MPN Voice
5 years ago
Question about PMF
I want to know that can someone with a blood picture like that of polycythemia vera have Primary
Myelofibrosis
. I know that PV may transform into
Myelofibrosis
over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
I want to know that can someone with a blood picture like that of polycythemia vera have Primary
Myelofibrosis
. I know that PV may transform into
Myelofibrosis
over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
avdheshmzn
in
MPN Voice
5 years ago
What is the rate for someone with ET to progress to myelofibrosis?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
Aneliv9
in
MPN Voice
5 years ago
Myelofibrosis - changing dose of rux and epo helps the fatigue
Hi I thought it was time I wrote an update post, as well as replying to others. The good news is that I’d discovered that changing my dose of ruxoltinib ( Jakafi) back to 15 mg bd ( it had been increased to 20mg bd from the new year, and that increase made me gain another 5kg in weight ( gaind that
Hi I thought it was time I wrote an update post, as well as replying to others. The good news is that I’d discovered that changing my dose of ruxoltinib ( Jakafi) back to 15 mg bd ( it had been increased to 20mg bd from the new year, and that increase made me gain another 5kg in weight ( gaind that
Rachelthepotter
in
MPN Voice
5 years ago
Update
Last year I wrote a few posts about my first transplant (MUD) to treat
myelofibrosis
. It failed to engraft so attempted a second transplant (HAPLO).
Last year I wrote a few posts about my first transplant (MUD) to treat
myelofibrosis
. It failed to engraft so attempted a second transplant (HAPLO).
Simon96
in
MPN Voice
5 years ago
Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)
utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short,
myelofibrosis
is stimulated by excessive signaling from vitamin D and immune cells known as macrophages. What do you think? Cheers, Malek.
utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short,
myelofibrosis
is stimulated by excessive signaling from vitamin D and immune cells known as macrophages. What do you think? Cheers, Malek.
amalekh
in
MPN Voice
5 years ago
Can a PV Patient Turn Myelofibrosis So Fast?
Is this a sign that MY PV has turned in
Myelofibrosis
, a condition which is much much worse? How could I turn from PV to MF only 7 months after diagnosis? There seems to be an alternative explanation that it could be caused by iron deficit. But there has been only 7 phlebotomies.
Is this a sign that MY PV has turned in
Myelofibrosis
, a condition which is much much worse? How could I turn from PV to MF only 7 months after diagnosis? There seems to be an alternative explanation that it could be caused by iron deficit. But there has been only 7 phlebotomies.
Fifty2018
in
MPN Voice
5 years ago
Travel insurance on trial drug
Is any company willing to take it on at a reasonable cost compared to having
myelofibrosis
without trial drug? Have been accepted for a promising looking trial but would really like to go to Rome this year for personal reasons
Is any company willing to take it on at a reasonable cost compared to having
myelofibrosis
without trial drug? Have been accepted for a promising looking trial but would really like to go to Rome this year for personal reasons
skodaguy
in
MPN Voice
5 years ago
Myelofibrosis patient experience talk -I'd like to do one at the Oxford Forum on 24th April
I have
myelofibrosis
, and I'm well enough to do it now, and I am being treated at Oxford so I know the set up. I may not be well enough to do one at a later event.
I have
myelofibrosis
, and I'm well enough to do it now, and I am being treated at Oxford so I know the set up. I may not be well enough to do one at a later event.
Rachelthepotter
in
MPN Voice
5 years ago
BAT and BALL strategy for living with MPNs
Hi I’ve been diagnosed with
myelofibrosis
now for about three years, and in thinking over how its been, and how it is now, I’ve come up with BAT and BALL as the best strategy ( cricket or baseball - no difference) . The BAT is the standard research acronym for Best Available Treatment.
Hi I’ve been diagnosed with
myelofibrosis
now for about three years, and in thinking over how its been, and how it is now, I’ve come up with BAT and BALL as the best strategy ( cricket or baseball - no difference) . The BAT is the standard research acronym for Best Available Treatment.
Rachelthepotter
in
MPN Voice
5 years ago
where can I buy Jakavi from?
My aunt has been diagnosed with secondary
myelofibrosis
and she has been taking Jakavi for the past almost 3 years. Now we are facing the challenge that the government will stop supply her medication for free and she she will be forced to purchase it.
My aunt has been diagnosed with secondary
myelofibrosis
and she has been taking Jakavi for the past almost 3 years. Now we are facing the challenge that the government will stop supply her medication for free and she she will be forced to purchase it.
sonn4eto
in
MPN Voice
5 years ago
Erythropoietin injections
My husband has post PV
Myelofibrosis
and is taking Ruxolitinib.
My husband has post PV
Myelofibrosis
and is taking Ruxolitinib.
Fika500
in
MPN Voice
5 years ago
Scottsdale Conference
Hi I live in London and have recently been diagnosed with prefibrotic
Myelofibrosis
. My son and his family live in Tucson and he has sourced a conference that is being held in Scottsdale, Phoenix. He really would like to attend but apparently it is full. Does anyone know anything about this.
Hi I live in London and have recently been diagnosed with prefibrotic
Myelofibrosis
. My son and his family live in Tucson and he has sourced a conference that is being held in Scottsdale, Phoenix. He really would like to attend but apparently it is full. Does anyone know anything about this.
kiwitraveller
in
MPN Voice
5 years ago
Mpl mutation
I know this is the rarest of the three mutations and it is the one that most often morphs to
myelofibrosis
. What else can anyone else tell me about it? I want to find out as much as I can . My sister passed from MF 9 years ago before they knew of this mutation so I don’t know if she had it too.
I know this is the rarest of the three mutations and it is the one that most often morphs to
myelofibrosis
. What else can anyone else tell me about it? I want to find out as much as I can . My sister passed from MF 9 years ago before they knew of this mutation so I don’t know if she had it too.
Cookiebaker
in
MPN Voice
5 years ago
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