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Questions to ask at my first appt.
Hi All, I am 38 and was recently diagnosed with JAK2+ and Primary
Myelofibrosis
. I have my first appointment with a Dr at UCSF. What are the most important questions I should ask? Thank you in advance!
Hi All, I am 38 and was recently diagnosed with JAK2+ and Primary
Myelofibrosis
. I have my first appointment with a Dr at UCSF. What are the most important questions I should ask? Thank you in advance!
Spectabilis
in
MPN Voice
7 years ago
MPN and Myeloma
Just wondering if anyone else has an MPN (
Myelofibrosis
) and Myeloma. I have been diagnosed with both in the last few months after having MGUS for many years.
Just wondering if anyone else has an MPN (
Myelofibrosis
) and Myeloma. I have been diagnosed with both in the last few months after having MGUS for many years.
Suke
in
MPN Voice
7 years ago
This is worth a look
v=WL3CZvIcUFY - Primary
myelofibrosis
https://www.youtube.com/watch?v=T8AtHWYgIHY - PV https://www.youtube.com/watch?v=tuYwvFvsmSY - Chronic Myelogenous Leukemia https://www.youtube.com/watch?v=dIaJPXtz1Ps I hope to see some of you at next week's Forum, but in the meantime Happy Viewing!
v=WL3CZvIcUFY - Primary
myelofibrosis
https://www.youtube.com/watch?v=T8AtHWYgIHY - PV https://www.youtube.com/watch?v=tuYwvFvsmSY - Chronic Myelogenous Leukemia https://www.youtube.com/watch?v=dIaJPXtz1Ps I hope to see some of you at next week's Forum, but in the meantime Happy Viewing!
Ovingite
in
MPN Voice
7 years ago
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Myelofibrosis and gastro-intestinal bleed and liver pain
Has anyone who has MF also had any gastro-intestinal bleed and/or liver troubles? Last week I quite suddenly became very breathless, light headed and weak. I went to clinic the following morning and blood test showed my Hg was at 56. I was admiited and overnight (Friday into Saturday) received 6 units
Has anyone who has MF also had any gastro-intestinal bleed and/or liver troubles? Last week I quite suddenly became very breathless, light headed and weak. I went to clinic the following morning and blood test showed my Hg was at 56. I was admiited and overnight (Friday into Saturday) received 6 units
Dodders
in
MPN Voice
7 years ago
flu jab
I have
myelofibrosis
and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or ruxolitinib each day and I'm wondering if anybody else has the symptoms Best wishes from Michael
I have
myelofibrosis
and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or ruxolitinib each day and I'm wondering if anybody else has the symptoms Best wishes from Michael
MichaelS
in
MPN Voice
7 years ago
Quick question
My husband was diagnosed with
Myelofibrosis
about a year ago and is on Hydro and Ruxolitinib. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this.
My husband was diagnosed with
Myelofibrosis
about a year ago and is on Hydro and Ruxolitinib. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this.
Marianjones54
in
MPN Voice
7 years ago
Diet for myelofibrosis
Good afternoon. Other than "a well balanced diet " can anybody advise on a recommended diet or source of information ? I have carried out a lot of research and spoken to a number of experts , unfortunately all to no avail . Thank you
Good afternoon. Other than "a well balanced diet " can anybody advise on a recommended diet or source of information ? I have carried out a lot of research and spoken to a number of experts , unfortunately all to no avail . Thank you
kevinbros
in
MPN Voice
7 years ago
Itchy lumps myelofibrosis
Hi my husband has
myelofibrosis
and recently has lumps appearing on his body, these lumps are red can be itchy and sore, some on his glands. Has anyone had this, thanks We saw the haematology this week but bu then they had gone but a few days later they returned
Hi my husband has
myelofibrosis
and recently has lumps appearing on his body, these lumps are red can be itchy and sore, some on his glands. Has anyone had this, thanks We saw the haematology this week but bu then they had gone but a few days later they returned
ardpatrick
in
MPN Voice
7 years ago
All about me and my Myelofibrosis
Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET in 2010. I questioned the diagnosis when it did not appear to follow the WHO guidelines and the top bloke agreed with me and I was then diagnosed with MF. I am now 77 years of age. To help the newbies to perk up, life has
Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET in 2010. I questioned the diagnosis when it did not appear to follow the WHO guidelines and the top bloke agreed with me and I was then diagnosed with MF. I am now 77 years of age. To help the newbies to perk up, life has
PeterNB
in
MPN Voice
7 years ago
Leaking bone marrow??
I have post PV
Myelofibrosis
.
I have post PV
Myelofibrosis
.
Fika500
in
MPN Voice
7 years ago
TOMORROW Live MPN Treatment Webinar!
David Snyder from City of Hope will help viewers to understand the various treatment options for those living with polycythemia vera (PV), essential thrombocythemia (ET) and
myelofibrosis
(MF). Register now to tune in live or get access to the replay: https://www.patientpower.info/lifewithmpn4
David Snyder from City of Hope will help viewers to understand the various treatment options for those living with polycythemia vera (PV), essential thrombocythemia (ET) and
myelofibrosis
(MF). Register now to tune in live or get access to the replay: https://www.patientpower.info/lifewithmpn4
tclementi
in
MPN Voice
7 years ago
TOMORROW Live Webinar on MPN Treatment Updates!
David Snyder from City of Hope will help viewers to understand the various treatment options for those living with polycythemia vera (PV), essential thrombocythemia (ET) and
myelofibrosis
(MF). Register now to tune in live or get access to the replay: https://www.patientpower.info/lifewithmpn4
David Snyder from City of Hope will help viewers to understand the various treatment options for those living with polycythemia vera (PV), essential thrombocythemia (ET) and
myelofibrosis
(MF). Register now to tune in live or get access to the replay: https://www.patientpower.info/lifewithmpn4
tclementi
in
Fight MPN
7 years ago
Suej1968
I'm having a big problem getting holiday insurance - E.T is no problem at all but the
myelofibrosis
is - anyone got any ideas? Hope this helps someone!
I'm having a big problem getting holiday insurance - E.T is no problem at all but the
myelofibrosis
is - anyone got any ideas? Hope this helps someone!
Coradelphine
in
MPN Voice
7 years ago
Why have I now got anemia?
The gastro-enterologist seemed quite surprised that the hematologist didn't think that my underlying PV had anything to do with the anemia and rasied the possibility that I may be progressing to
Myelofibrosis
.
The gastro-enterologist seemed quite surprised that the hematologist didn't think that my underlying PV had anything to do with the anemia and rasied the possibility that I may be progressing to
Myelofibrosis
.
Dodders
in
MPN Voice
7 years ago
New to the forun
Good afternoon to everyone out there I've recently been diagnosed with
myelofibrosis
Which I think is abbreviated to MF on the forum. I still have not got to grips with the various acronyms here The news came as a big shock to me at the time.
Good afternoon to everyone out there I've recently been diagnosed with
myelofibrosis
Which I think is abbreviated to MF on the forum. I still have not got to grips with the various acronyms here The news came as a big shock to me at the time.
Jimmyh29
in
MPN Voice
7 years ago
Myelofibrosis
Hi All I haven't posted on here for a while. My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even though Drs removed his spleen he says his stomach feels like it's going to explode. .His night sweats are awful and now he has started getting
Hi All I haven't posted on here for a while. My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even though Drs removed his spleen he says his stomach feels like it's going to explode. .His night sweats are awful and now he has started getting
Hidden
in
MPN Voice
7 years ago
Should I be asking for ruxolitinib?
A couple of years ago it has progressed to probable
Myelofibrosis
- my spleen was 23cm two years ago, I developed gout which is well controlled with Allopurinol. He sees no benefit in doing a bone marrow biopsy. I am now back to four monthly appointments.
A couple of years ago it has progressed to probable
Myelofibrosis
- my spleen was 23cm two years ago, I developed gout which is well controlled with Allopurinol. He sees no benefit in doing a bone marrow biopsy. I am now back to four monthly appointments.
Fika500
in
MPN Voice
7 years ago
Myelofibrosis and platelets
Hi my husband has has MF for nearly seven years now, on transfusions 3 units every 2 weeks. His platelet level has slowly gone down and is now at 12 does anyone else have this problem.
Hi my husband has has MF for nearly seven years now, on transfusions 3 units every 2 weeks. His platelet level has slowly gone down and is now at 12 does anyone else have this problem.
ardpatrick
in
MPN Voice
7 years ago
New consultant
Hi I have
Myelofibrosis
, can anyone recommend a good consultant between Halifax and London. I'd like to see Prof Harrison but it's quite a long way to travel. It would possibly be just for a second opinion but if they are close enough I could change. Thank you Janet
Hi I have
Myelofibrosis
, can anyone recommend a good consultant between Halifax and London. I'd like to see Prof Harrison but it's quite a long way to travel. It would possibly be just for a second opinion but if they are close enough I could change. Thank you Janet
Skye333
in
MPN Voice
8 years ago
Critical illness claim
Hi all, After notifying my insurers that I had been diagnosed with primary
myelofibrosis
I was encouraged by them to make a claim under my critical illness cover.
Hi all, After notifying my insurers that I had been diagnosed with primary
myelofibrosis
I was encouraged by them to make a claim under my critical illness cover.
si405mon
in
MPN Voice
8 years ago
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