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Myelofibrosis
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Bone pain in myelofibrosis
Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney infection. The pain in my lower back was unbearable and I couldn’t even stand or walk. They did all kinds of tests and confirmed my suspicions and sent
Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney infection. The pain in my lower back was unbearable and I couldn’t even stand or walk. They did all kinds of tests and confirmed my suspicions and sent
Cja1956
in
MPN Voice
3 years ago
Do sudden blasts necessarily mean progression?
Husband was diagnosed with prefibrotic
myelofibrosis
a year ago. Rubuxiltnib really helped calm his numbers and shrink his spleen down. A week ago blasts showed in his bloodwork results and his platelets decreased. He had another bone marrow biopsy and we are waiting for the results.
Husband was diagnosed with prefibrotic
myelofibrosis
a year ago. Rubuxiltnib really helped calm his numbers and shrink his spleen down. A week ago blasts showed in his bloodwork results and his platelets decreased. He had another bone marrow biopsy and we are waiting for the results.
TM76
in
MPN Voice
3 years ago
Has the vaccine worked?
I have been shielding as I have
Myelofibrosis
and am 82 - what now? SkipperL
I have been shielding as I have
Myelofibrosis
and am 82 - what now? SkipperL
skipperL
in
MPN Voice
3 years ago
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Vitamin D insufficiency
I would like to increase this to 1500 IU per day but I am concerned about a study that reported that vitamin D is involved in the progression to
myelofibrosis
. I welcome any advice.
I would like to increase this to 1500 IU per day but I am concerned about a study that reported that vitamin D is involved in the progression to
myelofibrosis
. I welcome any advice.
Dan73
in
MPN Voice
3 years ago
I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
billybrock
in
MPN Voice
3 years ago
Interferon-alpha for treating polycythemia vera yields improved myelofibrosis-free and overall survival
In conclusion, this study supports treatment of PV with rIFNα to prevent
myelofibrosis
and potentially prolong survival. https://pubmed.ncbi.nlm.nih.gov/33654206/?
In conclusion, this study supports treatment of PV with rIFNα to prevent
myelofibrosis
and potentially prolong survival. https://pubmed.ncbi.nlm.nih.gov/33654206/?
Manouche
in
MPN Voice
3 years ago
ET OR MYELOFIBROSIS
How is the prognosis with prefibrotic
myelofibrosis
? Do everyone get
myelofibrosis
? Thank you!
How is the prognosis with prefibrotic
myelofibrosis
? Do everyone get
myelofibrosis
? Thank you!
Johan2021
in
MPN Voice
3 years ago
Enlarged Spleen
I have post Pv
Myelofibrosis
and am on Ruxolitinib. My blood counts are good except for a white cell count of 21. However, my “blasts” are at 18%. I am not experiencing any major symptoms except for an enlarged Spleen that currently measures 28 cams, which is large.
I have post Pv
Myelofibrosis
and am on Ruxolitinib. My blood counts are good except for a white cell count of 21. However, my “blasts” are at 18%. I am not experiencing any major symptoms except for an enlarged Spleen that currently measures 28 cams, which is large.
billybrock
in
MPN Voice
3 years ago
Interferon-Alpha Improves MFS and OS Over Standard Approaches in Polycythemia Vera
Interferon-alpha has been shown to significantly improve both
myelofibrosis
-free survival and overall survival over hydroxyurea and phlebotomy only in patients with polycythemia vera.
Interferon-alpha has been shown to significantly improve both
myelofibrosis
-free survival and overall survival over hydroxyurea and phlebotomy only in patients with polycythemia vera.
JT_Marlin
in
MPN Voice
3 years ago
Interferon therapy in the management of myeloproliferative neoplasms
Time on treatment analysis demonstrated that every year on interferon reduced the risk of progression to
myelofibrosis
(MF) by 9% (HR 0.91 [95% CI, 0.87–0.95]; p < 0.001), and was associated with a mortality risk reduction by 6% per year (HR 0.94 [95% CI, 0.90–0.99]; p < 0.012).
Time on treatment analysis demonstrated that every year on interferon reduced the risk of progression to
myelofibrosis
(MF) by 9% (HR 0.91 [95% CI, 0.87–0.95]; p < 0.001), and was associated with a mortality risk reduction by 6% per year (HR 0.94 [95% CI, 0.90–0.99]; p < 0.012).
Manouche
in
MPN Voice
3 years ago
Newly diagnosed with myelofibrosis
I am newly diagnosed with
myelofibrosis
. I was called to be told a week ago. I’ve been in and out of shock since and now so frightened I can’t sleep. I have no information, and have been googling prognoses and crying constantly. I don’t know what I’m dealing with at all.
I am newly diagnosed with
myelofibrosis
. I was called to be told a week ago. I’ve been in and out of shock since and now so frightened I can’t sleep. I have no information, and have been googling prognoses and crying constantly. I don’t know what I’m dealing with at all.
LuluCosson
in
MPN Voice
3 years ago
Interferon-Alpha Reduces Myelofibrosis Risk, Mortality Rate in Low- and High-Risk Polycythemia Vera
The rate of
Myelofibrosis
Free Survival of low-risk patients was significantly higher in those treated with IFN (84%) than in the HU (65%) and phlebotomy (55%) groups” https://www.onclive.com/view/interferon-alpha-reduces-
myelofibrosis
-risk-mortality-rate-in-low--and-high-risk-polycythemia-vera
The rate of
Myelofibrosis
Free Survival of low-risk patients was significantly higher in those treated with IFN (84%) than in the HU (65%) and phlebotomy (55%) groups” https://www.onclive.com/view/interferon-alpha-reduces-
myelofibrosis
-risk-mortality-rate-in-low--and-high-risk-polycythemia-vera
Manouche
in
MPN Voice
4 years ago
MF
I’m 67 and about 2 years ago was diagnosed with
Myelofibrosis
with no real symptoms it was picked up with a routine blood test. Still in a bit of shock even now. I have avoided google and the like. Stem cell replacement had been ruled out I guess because of my age.
I’m 67 and about 2 years ago was diagnosed with
Myelofibrosis
with no real symptoms it was picked up with a routine blood test. Still in a bit of shock even now. I have avoided google and the like. Stem cell replacement had been ruled out I guess because of my age.
Grizly
in
MPN Voice
3 years ago
Sad news
He progressed to
Myelofibrosis
aged 74 and had a reasonable quality of life for a few years. Many people had no idea he had blood cancer and looked incredulous if we mentioned it. We had a very active social life and enjoyed walking.
He progressed to
Myelofibrosis
aged 74 and had a reasonable quality of life for a few years. Many people had no idea he had blood cancer and looked incredulous if we mentioned it. We had a very active social life and enjoyed walking.
Fika500
in
MPN Voice
3 years ago
myelofibrosis and headaches
i was diagnosed in sept. with
myelofibrosis
and am jak2 positive. i am 49. i have been having some pretty wicked headaches and was wondering what would be the best remedy. i have been on jakafi for 4 weeks and it has helped my bone pain tremendously and am less fatigued. i have gone through a lot of
i was diagnosed in sept. with
myelofibrosis
and am jak2 positive. i am 49. i have been having some pretty wicked headaches and was wondering what would be the best remedy. i have been on jakafi for 4 weeks and it has helped my bone pain tremendously and am less fatigued. i have gone through a lot of
runnerbird71
in
MPN Voice
4 years ago
Re: WARWICK's ASCT Journey Begins Today...
Engraftment can take a bit longer with
myelofibrosis
patients due to the scar tissue in the marrow space. The picture steve posted was me having platelets which is such a strange thing to think when my platelets liked to be around 900 to 1000 or more.
Engraftment can take a bit longer with
myelofibrosis
patients due to the scar tissue in the marrow space. The picture steve posted was me having platelets which is such a strange thing to think when my platelets liked to be around 900 to 1000 or more.
socrates_8
in
MPN Voice
3 years ago
Headache Remedy
I’m newly diagnosed with
myelofibrosis
and just got insurance so I will be getting a specialist next week. My hemotologist is not good with giving me much info. I have to research everything myself.
I’m newly diagnosed with
myelofibrosis
and just got insurance so I will be getting a specialist next week. My hemotologist is not good with giving me much info. I have to research everything myself.
runnerbird71
in
MPN Voice
3 years ago
Picture of nucleated red blood cell
Attached is a picture of a nucleated red blood cell which is what you would see in
myelofibrosis
. You can see that all the other red blood cells lost their nucleus before circulating. Sorry just a huge cell nerd.
Attached is a picture of a nucleated red blood cell which is what you would see in
myelofibrosis
. You can see that all the other red blood cells lost their nucleus before circulating. Sorry just a huge cell nerd.
clubdino
in
MPN Voice
4 years ago
An Explosion of Options for MPNs Forthcoming
Forward progress for Myeloproliferative neoplasms (
myelofibrosis
(MF), polycythemia vera (PV), and essential thrombocythemia (ET)) were significant in terms of biology and new therapies » https://opmed.doximity.com/articles/ash-2020-an-explosion-of-options-for-mpns-forthcoming
Forward progress for Myeloproliferative neoplasms (
myelofibrosis
(MF), polycythemia vera (PV), and essential thrombocythemia (ET)) were significant in terms of biology and new therapies » https://opmed.doximity.com/articles/ash-2020-an-explosion-of-options-for-mpns-forthcoming
Manouche
in
MPN Voice
4 years ago
Interferon in Polycythemia Vera (PV) Yields Improved Myelofibrosis-Free and Overall Survival
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV
myelofibrosis
, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV
myelofibrosis
, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
Manouche
in
MPN Voice
4 years ago
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