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Myelofibrosis
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Myelofibrosis
Does anyone know if MF can cause a secondary cancer? We were at the specialist yesterday and initially had to see a different Doctor who didn't know the history, on looking through my Husband's notes made the comment that there was a small mass on T9 of the spine, and another new one on T7. Up until
Does anyone know if MF can cause a secondary cancer? We were at the specialist yesterday and initially had to see a different Doctor who didn't know the history, on looking through my Husband's notes made the comment that there was a small mass on T9 of the spine, and another new one on T7. Up until
Hidden
in
MPN Voice
10 years ago
Vomiting and Extreme Cold
My husband has
Myelofibrosis
and a week ago had to have a bone marrow biopsy as the Ruxolitinib appears to have stopped working for him. Apart from fatigue he is feeling extremely cold often (even in warm weather) and has been vomiting his food up from time to time.
My husband has
Myelofibrosis
and a week ago had to have a bone marrow biopsy as the Ruxolitinib appears to have stopped working for him. Apart from fatigue he is feeling extremely cold often (even in warm weather) and has been vomiting his food up from time to time.
Hidden
in
MPN Voice
10 years ago
Stem cell transplantation
Are there any
myelofibrosis
sufferers out there who are considering stem cell transplantation? If so, please get in touch. Thank you.
Are there any
myelofibrosis
sufferers out there who are considering stem cell transplantation? If so, please get in touch. Thank you.
daisystar
in
MPN Voice
10 years ago
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More from the perspective of a caregiver
Here's a link to the latest blog from my wife, Esther, who has supported me with CLL since 1996 and
myelofibrosis
since 2011: http://www.patientpower.info/blog/patient-power/2014/09/30/voices-of-caregivers/ Feel free to add your voice!
Here's a link to the latest blog from my wife, Esther, who has supported me with CLL since 1996 and
myelofibrosis
since 2011: http://www.patientpower.info/blog/patient-power/2014/09/30/voices-of-caregivers/ Feel free to add your voice!
andrewschorr
in
CLL Support
10 years ago
Low Platelets
My husband who has
myelofibrosis
, has just had his bi monthly check-up and his platelets have dropped to 97, hence the extreme fatigue I would think. He also had an x-ray on his spleen which has increased in size. It was reducing in size slowly prior to this.
My husband who has
myelofibrosis
, has just had his bi monthly check-up and his platelets have dropped to 97, hence the extreme fatigue I would think. He also had an x-ray on his spleen which has increased in size. It was reducing in size slowly prior to this.
cheridiane
in
MPN Voice
10 years ago
My Wife, Esther, Shares Perspective of Cancer Caregiver
I am so proud of my wife of 29 years, Esther, for being a panelist at a recent town meeting for CLL patients in Seattle and being open about her experience as a caregiver to me, a patient with CLL and
myelofibrosis
.
I am so proud of my wife of 29 years, Esther, for being a panelist at a recent town meeting for CLL patients in Seattle and being open about her experience as a caregiver to me, a patient with CLL and
myelofibrosis
.
andrewschorr
in
CLL Support
10 years ago
Ruxolitinib - patient & family/carer questionnaires
, or
myelofibrosis
secondary to polycythaemia vera or essential thrombocythaemia has significantly improved the lives of patients affected by
myelofibrosis
and in many cases this improvement is dramatic with long lasting tangible benefits.
, or
myelofibrosis
secondary to polycythaemia vera or essential thrombocythaemia has significantly improved the lives of patients affected by
myelofibrosis
and in many cases this improvement is dramatic with long lasting tangible benefits.
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Request from the MPN Foundation for Vietnam Veterans exposed to Agent Orange and who now have a MPN to contact them
MPN Advocacy and Education International is searching for Vietnam Veterans who were exposed to Agent Orange and now have a diagnosis of
Myelofibrosis
, Polycythemia Vera, or Essential Thrombocythemia (Myeloproliferative Neoplasms-MPNs).
MPN Advocacy and Education International is searching for Vietnam Veterans who were exposed to Agent Orange and now have a diagnosis of
Myelofibrosis
, Polycythemia Vera, or Essential Thrombocythemia (Myeloproliferative Neoplasms-MPNs).
Mazcd
MPNVoice
in
MPN Voice
10 years ago
My dad has myelofibrosis and now he is suffering from Typhoid, his spleen has grown considerably large after typhoid what should we do?
ermanuarora
in
MPN Voice
10 years ago
I have PRV treated with hydroxy + venesection. My platelet counts have fallen and are now below normal. Is this Myelofibrosis starting?
Does anyone have any similar past experience? Jane
Does anyone have any similar past experience? Jane
jane13
in
MPN Voice
10 years ago
Researchers discover new genetic mutation in MPN.
In particular, this was found in the majority of patients with essential thrombocythaemia or
myelofibrosis
that were negative for the JAK2 test.
In particular, this was found in the majority of patients with essential thrombocythaemia or
myelofibrosis
that were negative for the JAK2 test.
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Info on my Myelofibrosis.
Hi everybody, Thank you all for your great response, I went to see my haemo yesterday, she was pleased with blood count, and said she was pleased with the size of my spleen. although it is still large, it is not as large as it was before I started on trial with ruxolitinib 20mg . It seems to keep it
Hi everybody, Thank you all for your great response, I went to see my haemo yesterday, she was pleased with blood count, and said she was pleased with the size of my spleen. although it is still large, it is not as large as it was before I started on trial with ruxolitinib 20mg . It seems to keep it
bernie62
in
MPN Voice
10 years ago
The American Society of Hematology (ASH) - videos from Dr Mesa
Myelofibrosis
: http://www.youtube.com/watch?v=OEhRn2e-7c4&feature=youtu.be Essential Thrombocythaemia : http://www.youtube.com/watch?v=G2Qjj5Tm5H0&feature=youtu.be Polycythaemia Vera : http://www.youtube.com/watch?v=Sr6HD1sEsYk&feature=youtu.be
Myelofibrosis
: http://www.youtube.com/watch?v=OEhRn2e-7c4&feature=youtu.be Essential Thrombocythaemia : http://www.youtube.com/watch?v=G2Qjj5Tm5H0&feature=youtu.be Polycythaemia Vera : http://www.youtube.com/watch?v=Sr6HD1sEsYk&feature=youtu.be
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Sanofi discontinues clinical development of investigational JAK2 agent Fedratinib (SAR302503)
The press release is available here http://www.mpdvoice.org.uk/wp-content/uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary
myelofibrosis
The press release is available here http://www.mpdvoice.org.uk/wp-content/uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary
myelofibrosis
Mazcd
MPNVoice
in
MPN Voice
11 years ago
my dad has had myelofibrosis for the last 5 yrs and in the consultants opinion has now progressed to Accute Myeloid Leukemia.
I just wondered if anyone has any knowledge of this or maybe a relative in the same situation.
I just wondered if anyone has any knowledge of this or maybe a relative in the same situation.
rosie57
in
MPN Voice
11 years ago
What questions do you want Andrew Schorr of Patient Power to ask CLL world experts at the International Workshop on CLL?
Best Wishes, Andrew Schorr, dx'ed 4/96, FCR in 2000, remaining in remission with with a second cancer in 2011,
myelofibrosis
, doing great with expensive little white pill morning and night.
Best Wishes, Andrew Schorr, dx'ed 4/96, FCR in 2000, remaining in remission with with a second cancer in 2011,
myelofibrosis
, doing great with expensive little white pill morning and night.
AussieNeil
Partner
in
CLL Support
11 years ago
Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE
Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary
myelofibrosis
, or
myelofibrosis
secondary to polycythaemia vera or essential thrombocythaemia.
Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary
myelofibrosis
, or
myelofibrosis
secondary to polycythaemia vera or essential thrombocythaemia.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Diagnosis 'Myelothingy'
A week more worritin passed me by and we went to get the news, He reckoned I summat called
Myelofibrosis
coz they'd gathered a number of clues.
A week more worritin passed me by and we went to get the news, He reckoned I summat called
Myelofibrosis
coz they'd gathered a number of clues.
JediReject
in
MPN Voice
11 years ago
MPN(D) Related Fatigue – MRF – Survey
Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with
myelofibrosis
(MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and polycythaemia vera (PV).
Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with
myelofibrosis
(MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and polycythaemia vera (PV).
Mazcd
MPNVoice
in
MPN Voice
11 years ago
CLL patient advocate and journalist, Andrew Schorr shares his story with CLL patient Dr Brian Koffman from the other side of the lens.
A Personal Perspective on CLL and
Myelofibrosis
Progress http://www.patientpower.info/video/a-personal-perspective-on-cll-and-
myelofibrosis
-progress?
A Personal Perspective on CLL and
Myelofibrosis
Progress http://www.patientpower.info/video/a-personal-perspective-on-cll-and-
myelofibrosis
-progress?
HAIRBEAR_UK
Administrator
in
CLL Support
12 years ago
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