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Anybody use NSAIDS, in particular cox-2 inhibitors?
Sure, doubling the risk of GI bleed doesn’t seem like a good idea by taking both, but I wonder if the benefits of reduction in pain and fatigue caused by the cytokines we experience in
myelofibrosis
(personal experience), ET or PV might weigh against that risk.
Sure, doubling the risk of GI bleed doesn’t seem like a good idea by taking both, but I wonder if the benefits of reduction in pain and fatigue caused by the cytokines we experience in
myelofibrosis
(personal experience), ET or PV might weigh against that risk.
TLJ-1
in
MPN Voice
2 years ago
Tingling Toes
I have been diagnosed with Pre
Myelofibrosis
from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For the last few weeks I have moved had tingling Toes nad and my 2 big toes are painful. Is this symptoms will it improve on its own. Some days it is really painful
I have been diagnosed with Pre
Myelofibrosis
from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For the last few weeks I have moved had tingling Toes nad and my 2 big toes are painful. Is this symptoms will it improve on its own. Some days it is really painful
JeniMac
in
MPN Voice
2 years ago
essential thrombocytosis
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have
myelofibrosis
which apparently is quite serious, can anyone help . Thanks.
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have
myelofibrosis
which apparently is quite serious, can anyone help . Thanks.
glyndale
in
MPN Voice
2 years ago
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MF progression??
My question is - Has anybody on this forum any experience with ET that has progressed to
myelofibrosis
(MF)? I saw my haematologist on Thursday and she commented on my weight loss, paleness and I definitely have more fatigue than a number of years ago.
My question is - Has anybody on this forum any experience with ET that has progressed to
myelofibrosis
(MF)? I saw my haematologist on Thursday and she commented on my weight loss, paleness and I definitely have more fatigue than a number of years ago.
Karol_Rua
in
MPN Voice
2 years ago
MPNVoice Living With MPNs. .
The
Myelofibrosis
breakout group was the biggest I have been in with 30+ patients/partners. Hope it was enjoyed by those who joined online. It had a worldwide audience. As I walked to the station with a nice ‘young’ kiwi girl she told me her parents had watched the whole thing in NZ!
The
Myelofibrosis
breakout group was the biggest I have been in with 30+ patients/partners. Hope it was enjoyed by those who joined online. It had a worldwide audience. As I walked to the station with a nice ‘young’ kiwi girl she told me her parents had watched the whole thing in NZ!
MFBMT2011
in
MPN Voice
2 years ago
Living With MPNs day.
Not sure about the Where’s Wally shirt but will be in the
Myelofibrosis
group if anyone wants to say hello or chat about SCT. Chris (Princess Leia version with lady stem cells)
Not sure about the Where’s Wally shirt but will be in the
Myelofibrosis
group if anyone wants to say hello or chat about SCT. Chris (Princess Leia version with lady stem cells)
MFBMT2011
in
MPN Voice
2 years ago
Interesting
PharmaEssentia is interested in the attributes of the amended dosing approach with ropeginterferon alfa-2b that may extend into related MPNs with unmet needs such as essential thrombocythemia (ET) and pre-fibrotic primary
myelofibrosis
(pMF).
PharmaEssentia is interested in the attributes of the amended dosing approach with ropeginterferon alfa-2b that may extend into related MPNs with unmet needs such as essential thrombocythemia (ET) and pre-fibrotic primary
myelofibrosis
(pMF).
wateron
in
MPN Voice
1 year ago
Covid vaccine or No Covid vaccine
Hi Guys I have Primary
Myelofibrosis
. Bloods cells slowly going south platelets in the 60s red blood cells in the 90s. Still on the watch and wait treatment at the moment I had 5 Covid vaccinations but the last 2 jabs. Moderna which gave me I’ll sweats and chills and generally feeling terrible.
Hi Guys I have Primary
Myelofibrosis
. Bloods cells slowly going south platelets in the 60s red blood cells in the 90s. Still on the watch and wait treatment at the moment I had 5 Covid vaccinations but the last 2 jabs. Moderna which gave me I’ll sweats and chills and generally feeling terrible.
Grizly
in
MPN Voice
2 years ago
My Story
The lab has not said I have ET, nor
Myelofibrosis
. The lab stated that they were leaning towards
Myelofibrosis
but did not 100% confirm this or ET for that matter. Now my Hematologist throws his hands in the air and tells me I don't know for sure.
The lab has not said I have ET, nor
Myelofibrosis
. The lab stated that they were leaning towards
Myelofibrosis
but did not 100% confirm this or ET for that matter. Now my Hematologist throws his hands in the air and tells me I don't know for sure.
Director1157
in
MPN Voice
2 years ago
Recombinant Interferon-β in the Treatment of Polycythemia Vera
., ET and PV) to the advanced
myelofibrosis
stage.
., ET and PV) to the advanced
myelofibrosis
stage.
Manouche
in
MPN Voice
1 year ago
An antibody for myelofibrosis – “that’s a true discovery”
“By understanding
myelofibrosis
, you have the potential to discover breakthrough treatments for both acute leukaemia and diseases caused by fibrosis. “The
myelofibrosis
antibody is a big step forward because it proves that immunotherapy can actually stop the bad cells from dividing.
“By understanding
myelofibrosis
, you have the potential to discover breakthrough treatments for both acute leukaemia and diseases caused by fibrosis. “The
myelofibrosis
antibody is a big step forward because it proves that immunotherapy can actually stop the bad cells from dividing.
socrates_8
in
MPN Voice
2 years ago
Study about young MPN cohort. Could we have some further information from prof.Harisson (was a co-author)@Mazcd?
"Disease transformation occurred in 48 patients (10.9%, 1.13 % pt/year), usually to
myelofibrosis
(7.5%) with splenomegaly as a novel risk factor for transformation in ET (p= 0.000) in logistical regression." Does this mean that if someone has mpn for px.25 years has 25% chance of progression??
"Disease transformation occurred in 48 patients (10.9%, 1.13 % pt/year), usually to
myelofibrosis
(7.5%) with splenomegaly as a novel risk factor for transformation in ET (p= 0.000) in logistical regression." Does this mean that if someone has mpn for px.25 years has 25% chance of progression??
Aneliv9
in
MPN Voice
2 years ago
Fedratinib
I would be grateful to receive any feedback from anybody currently being treated with Fedratinib in relation to
myelofibrosis
. In particular anybody in the USA where it has been in use for a longer period of time than Great Britain. Regards KB
I would be grateful to receive any feedback from anybody currently being treated with Fedratinib in relation to
myelofibrosis
. In particular anybody in the USA where it has been in use for a longer period of time than Great Britain. Regards KB
kevinbros
in
MPN Voice
2 years ago
Night cramps
I have
Myelofibrosis
and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
I have
Myelofibrosis
and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
skipperL
in
MPN Voice
2 years ago
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis..
Excellent results of Bomedemstat in the Phase 2 study’s ET and
Myelofibrosis
.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Excellent results of Bomedemstat in the Phase 2 study’s ET and
Myelofibrosis
.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Paul1993et
in
MPN Voice
2 years ago
Fibrosis, Grade 0 does not mean None
Consensus on the grading of
myelofibrosis
(MF) as adapted from the literature.32,33,36 Grading Description MF - 0 Scattered linear reticulin with no intersections (cross-overs) corresponding to normal bone marrow MF - 1 Loose network of reticulin with many intersections, especially in perivascular
Consensus on the grading of
myelofibrosis
(MF) as adapted from the literature.32,33,36 Grading Description MF - 0 Scattered linear reticulin with no intersections (cross-overs) corresponding to normal bone marrow MF - 1 Loose network of reticulin with many intersections, especially in perivascular
EPguy
in
MPN Voice
2 years ago
MF high risk Mutations
- consider Interferon (rIFNα) • Intermediate-2 to High risk (by IPSS/DIPSS/DIPSS-plus score) - Allogeneic stem cell transplant (SCT) for eligible patients - First line Ruxolitinib for splenomegaly == #2- INF for MF: What about Interferon in
Myelofibrosis
?
- consider Interferon (rIFNα) • Intermediate-2 to High risk (by IPSS/DIPSS/DIPSS-plus score) - Allogeneic stem cell transplant (SCT) for eligible patients - First line Ruxolitinib for splenomegaly == #2- INF for MF: What about Interferon in
Myelofibrosis
?
EPguy
in
MPN Voice
2 years ago
Anyone familiar with DNMT3A?
Btw some updates about my mpn, I’ve just got my results from NGS test recently, as a result got my jak2 and DNMT3A positive, so now I’m confirmed primary
myelofibrosis
and 5 days ago I’ve gone through routine endoscopy (as a result ligation in several spots) and after 4 months without ligation due to
Btw some updates about my mpn, I’ve just got my results from NGS test recently, as a result got my jak2 and DNMT3A positive, so now I’m confirmed primary
myelofibrosis
and 5 days ago I’ve gone through routine endoscopy (as a result ligation in several spots) and after 4 months without ligation due to
Dan39
in
MPN Voice
2 years ago
Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022
There are three types of MPNs: polycythemia vera (PV), essential thrombocythemia (ET), and primary
myelofibrosis
(PMF).
There are three types of MPNs: polycythemia vera (PV), essential thrombocythemia (ET), and primary
myelofibrosis
(PMF).
PhysAssist
in
MPN Voice
1 year ago
Can Hydrea Resolve (fix) Marrow?
-- One report, 22 years ago: https://pubmed.ncbi.nlm.nih.gov/10651725/ This is for
myelofibrosis
in context of CML, so not right on the point of MPN, but should be relevant. It likely used the early non-peg IFN so that would be a negative on the IFN side.
-- One report, 22 years ago: https://pubmed.ncbi.nlm.nih.gov/10651725/ This is for
myelofibrosis
in context of CML, so not right on the point of MPN, but should be relevant. It likely used the early non-peg IFN so that would be a negative on the IFN side.
EPguy
in
MPN Voice
2 years ago
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