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MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups
know about the combined Australia and NZ one, but a new one was set up last Sunday just for people in New Zealand, this is an extract from the page information - 'This group has been set up to provide information and support to those currently with MPN’s (Polycythemia Vera, Essential Thrombocythemia,
Myelofibrosis
know about the combined Australia and NZ one, but a new one was set up last Sunday just for people in New Zealand, this is an extract from the page information - 'This group has been set up to provide information and support to those currently with MPN’s (Polycythemia Vera, Essential Thrombocythemia,
Myelofibrosis
Wentry
in
MPN Voice
6 years ago
MF (an acronym I often used, It'll never mean the same again!).
Unfortunately, they have confirmed that I have
Myelofibrosis
! "Low Risk" at present. Although I was Polycycthemic in Hospital, I am not anymore. In fact, for the last five weeks including Monday, my bloods were fairly standard. which is good right?
Unfortunately, they have confirmed that I have
Myelofibrosis
! "Low Risk" at present. Although I was Polycycthemic in Hospital, I am not anymore. In fact, for the last five weeks including Monday, my bloods were fairly standard. which is good right?
P-O-T-S
in
MPN Voice
6 years ago
New potential therapeutic target for MF
Early days but one to watch.... https://www.nature.com/articles/s41467-018-03627-9 “To summarize, using two murine models of
myelofibrosis
, we show that a specific HSP27 inhibitor, OGX-427, limits the progression of
myelofibrosis
by (i) reducing both spleen weight and size, (ii) decreasing myeloid
Early days but one to watch.... https://www.nature.com/articles/s41467-018-03627-9 “To summarize, using two murine models of
myelofibrosis
, we show that a specific HSP27 inhibitor, OGX-427, limits the progression of
myelofibrosis
by (i) reducing both spleen weight and size, (ii) decreasing myeloid
Paul123456
in
MPN Voice
6 years ago
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Good article on Pacritinib
https://www.curetoday.com/articles/pacritinib-offers-new-option-for-patients-with-advanced-
myelofibrosis
https://www.curetoday.com/articles/pacritinib-offers-new-option-for-patients-with-advanced-
myelofibrosis
Paul123456
in
MPN Voice
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV
Myelofibrosis
and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone.
Hi Y'All, I have post-PV
Myelofibrosis
and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone.
jane13
in
MPN Voice
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
"The prognostic advantage of calreticulin mutations in
myelofibrosis
might be confined to type 1 or type 1-like CALR variants_BLOOD_2014" This article implies that CALR Types 1 & 2 can render significantly different Overall Survival (OS) outcomes for a patient.
"The prognostic advantage of calreticulin mutations in
myelofibrosis
might be confined to type 1 or type 1-like CALR variants_BLOOD_2014" This article implies that CALR Types 1 & 2 can render significantly different Overall Survival (OS) outcomes for a patient.
socrates_8
in
MPN Voice
6 years ago
Basal cell skin cancer recurrence: anyone else had similar thing happen
I’ve got
myelofibrosis
and I’ve been on ruxolitinib and epo and apart from some weight gain and chest pains I’m doing OK. However I’d had basal cell skin cancer in the past ( living in Australia for 10 yrs) and its probably recurred.
I’ve got
myelofibrosis
and I’ve been on ruxolitinib and epo and apart from some weight gain and chest pains I’m doing OK. However I’d had basal cell skin cancer in the past ( living in Australia for 10 yrs) and its probably recurred.
Rachelthepotter
in
MPN Voice
6 years ago
ET and Myelofibrosis
Is there any others out there with both of the above? I just wanted to compare note Sue
Is there any others out there with both of the above? I just wanted to compare note Sue
Coradelphine
in
MPN Voice
6 years ago
Marathon Des Sables Morocco 6th -16th April 2018
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with
myelofibrosis
and others with Myeloproliferative Neoplasms.
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with
myelofibrosis
and others with Myeloproliferative Neoplasms.
Kevbroz
in
MPN Voice
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in
myelofibrosis
after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib.
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in
myelofibrosis
after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib.
Paul123456
in
MPN Voice
6 years ago
Promising results for MF Trial - Pacritinib
“Conclusions and Relevance: In patients with
myelofibrosis
and thrombocytopenia, including those with prior anti-JAK therapy, pacritinib twice daily was more effective than BAT, including ruxolitinib, for reducing splenomegaly and symptoms.”
“Conclusions and Relevance: In patients with
myelofibrosis
and thrombocytopenia, including those with prior anti-JAK therapy, pacritinib twice daily was more effective than BAT, including ruxolitinib, for reducing splenomegaly and symptoms.”
Paul123456
in
MPN Voice
6 years ago
Colchicine- is it safe to take it if you have post PV Myelofibrosis?
My husband’s gout has been well controlled by Allopurinol for three years but he’s had a flare up for three days. ( He has post Ploycythaemia
Myelofibrosis
treated with Ruxolitinib) . He’s been prescribed Colchicine 500mg ( one to be taken four times a day for three days) .
My husband’s gout has been well controlled by Allopurinol for three years but he’s had a flare up for three days. ( He has post Ploycythaemia
Myelofibrosis
treated with Ruxolitinib) . He’s been prescribed Colchicine 500mg ( one to be taken four times a day for three days) .
Fika500
in
MPN Voice
6 years ago
Recent blood tests
and I'm positive for something called CALR, which he says can predispose someone to develop AML or
myelofibrosis
. H3e explained it all but I'm not sure I understood properly, can anyone shed more light on it? Does anyone else have CALR?
and I'm positive for something called CALR, which he says can predispose someone to develop AML or
myelofibrosis
. H3e explained it all but I'm not sure I understood properly, can anyone shed more light on it? Does anyone else have CALR?
hall2
in
MPN Voice
6 years ago
Myelofibrosis Natural interventions
I was diagnosed with
myelofibrosis
in 2011. This is said to be incurable. However, I and a number of others on Cancer Compass have been improving our figures by taking very high doses of vitamin C and (care) selenium amongst other supplements. I have taken no medications for this at all.
I was diagnosed with
myelofibrosis
in 2011. This is said to be incurable. However, I and a number of others on Cancer Compass have been improving our figures by taking very high doses of vitamin C and (care) selenium amongst other supplements. I have taken no medications for this at all.
HealthySense
in
PMRGCAuk
6 years ago
Myelofibrosis life expectancy
Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000. Sometimes
Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000. Sometimes
Hidden
in
MPN Voice
6 years ago
MF low risk to intermediate
Hi fellow MPN'ers, After 21 years, my time of low risk primary
myelofibrosis
has come to an end. In the middle of last year my haemoglobin level was 104g/L and now it is 88, moving me from the low risk category to the intermediate risk category.
Hi fellow MPN'ers, After 21 years, my time of low risk primary
myelofibrosis
has come to an end. In the middle of last year my haemoglobin level was 104g/L and now it is 88, moving me from the low risk category to the intermediate risk category.
Simon96
in
MPN Voice
6 years ago
Pre-fibrotic PMF
I am concerned might be moving to early
myelofibrosis
. Anyone with a similar experience? Thanks to all!
I am concerned might be moving to early
myelofibrosis
. Anyone with a similar experience? Thanks to all!
Indigo42916
in
MPN Voice
7 years ago
Lyn30
I was diagnosed with
myelofibrosis
last early September,then 3 weeks later the tests showed I also have low risk MDS. I would love to hear from anyone with
myelofibrosis
as this is a high risk condition for me. It is great to be in touch.
I was diagnosed with
myelofibrosis
last early September,then 3 weeks later the tests showed I also have low risk MDS. I would love to hear from anyone with
myelofibrosis
as this is a high risk condition for me. It is great to be in touch.
champ30
in
MPN Voice
7 years ago
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
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