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Myelofibrosis
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This is not good enough !!!
(These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET,
myelofibrosis
), MDS, LGLL, and other chronic blood cancers that do not affect B cells (B lymphocytes) and ONLY on confirmation of a positive PCR test) Please MPN Voice confirm that you are petitioning for these treatments
(These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET,
myelofibrosis
), MDS, LGLL, and other chronic blood cancers that do not affect B cells (B lymphocytes) and ONLY on confirmation of a positive PCR test) Please MPN Voice confirm that you are petitioning for these treatments
Hidden
in
MPN Voice
3 years ago
ASH 2021 -- cytopenic myelofibrosis
For cytopenic
myelofibrosis
a Phase 3 trial PERSIST-2 reports pacritinib has advantages over Rux. https://www.cancernetwork.com/view/treatment-with-tafasitamab-lenalidomide-and-r-chop-yields-promising-activity-in-untreated-dlbcl <<Among the 43 patients included in the efficacy analysis who received pacritinib
For cytopenic
myelofibrosis
a Phase 3 trial PERSIST-2 reports pacritinib has advantages over Rux. https://www.cancernetwork.com/view/treatment-with-tafasitamab-lenalidomide-and-r-chop-yields-promising-activity-in-untreated-dlbcl <<Among the 43 patients included in the efficacy analysis who received pacritinib
EPguy
in
MPN Voice
3 years ago
New User Name (EPguy) and MPN as a Continuum
utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+leu%2Frss%2Fcurrent+%28Leukemia+-+Issue%29 <<Are polycythemia vera, essential thrombocytosis, and primary
myelofibrosis
1, 2, or 3 diseases?
utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+leu%2Frss%2Fcurrent+%28Leukemia+-+Issue%29 <<Are polycythemia vera, essential thrombocytosis, and primary
myelofibrosis
1, 2, or 3 diseases?
EPguy
in
MPN Voice
2 years ago
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Myelofibrosis and nausea
I was diagnosed with Prefibrotic
Myelofibrosis
3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the mornings with breakfast. The last few weeks I have been waking feeling nauseous- once I have eaten it eases but if I am late having lunch it returns.
I was diagnosed with Prefibrotic
Myelofibrosis
3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the mornings with breakfast. The last few weeks I have been waking feeling nauseous- once I have eaten it eases but if I am late having lunch it returns.
kiwitraveller
in
MPN Voice
3 years ago
Information on Acute Myeloid Leukaemia
After PV for many years ,
Myelofibrosis
for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years ,
Myelofibrosis
for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
3 years ago
INF, allele and more
<<homozygous mutations are associated with a greater risk of progression to
myelofibrosis
>>---I don't know whether I have homozy or heterozy but the former responds better to INF based on recent info from ContiPV.
<<homozygous mutations are associated with a greater risk of progression to
myelofibrosis
>>---I don't know whether I have homozy or heterozy but the former responds better to INF based on recent info from ContiPV.
EPguy
in
MPN Voice
2 years ago
Worrying appointment today
My fibrosis is Grade 3 but I didn't know that the extent of fibrosis might affect the feasibility of SCT (although we knew that the risk of graft failure is higher in
Myelofibrosis
).
My fibrosis is Grade 3 but I didn't know that the extent of fibrosis might affect the feasibility of SCT (although we knew that the risk of graft failure is higher in
Myelofibrosis
).
Otterfield
in
MPN Voice
3 years ago
Conversations with MPN Specialists- Focus on MF
Brady Stein, Northwestern Medicine as we dive into
myelofibrosis
. Make sure to ask your questions during this event! https://us06web.zoom.us/webinar/register/WN_ErbSUgycRYKqpr2eRL16-w
Brady Stein, Northwestern Medicine as we dive into
myelofibrosis
. Make sure to ask your questions during this event! https://us06web.zoom.us/webinar/register/WN_ErbSUgycRYKqpr2eRL16-w
hunter5582
in
MPN Voice
3 years ago
Paper on Misc Mutations
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in
myelofibrosis
compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in
myelofibrosis
compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
EPguy
in
MPN Voice
2 years ago
Dental implant with MPN
Hello, Have you had a dental implant since being dx with
Myelofibrosis
, and if so which material is your implant made from? I’m trying to decide whether to have ceramic or titanium, and am seeking any experiences with such by MF patients. Thank you, Lucy
Hello, Have you had a dental implant since being dx with
Myelofibrosis
, and if so which material is your implant made from? I’m trying to decide whether to have ceramic or titanium, and am seeking any experiences with such by MF patients. Thank you, Lucy
LucyGeering
in
Leukaemia Support
3 years ago
MPN and Covid vaxes
-Two of the four patients (with anti-nucleo) had
myelofibrosis
(MF), three were vaccinated with Pfizer-BioNTech and one with Moderna vaccine.
-Two of the four patients (with anti-nucleo) had
myelofibrosis
(MF), three were vaccinated with Pfizer-BioNTech and one with Moderna vaccine.
EPguy
in
MPN Voice
2 years ago
SCT risks
What I didn't know before was that 30% relapse and end up with
Myelofibrosis
again, which was quite depressing to hear. He warned me that, if the transplant is successful, there could be a significant impact on my quality of life from GVHD.
What I didn't know before was that 30% relapse and end up with
Myelofibrosis
again, which was quite depressing to hear. He warned me that, if the transplant is successful, there could be a significant impact on my quality of life from GVHD.
Otterfield
in
MPN Voice
3 years ago
Rux vs Vaccine
.>> https://www.news-medical.net/news/20210927/Third-COVID-19-mRNA-vaccine-booster-dose-indicated-for-
myelofibrosis
-patients.aspx
.>> https://www.news-medical.net/news/20210927/Third-COVID-19-mRNA-vaccine-booster-dose-indicated-for-
myelofibrosis
-patients.aspx
EPguy
in
MPN Voice
3 years ago
Anagralide
Not progressed to
myelofibrosis
but do have scarring on bone marrow. After years on Hydroxicarbimide she feels that I would benefit starting Anagralide as I am now on 2500 a day and platelets are esculating again 855 at last count.
Not progressed to
myelofibrosis
but do have scarring on bone marrow. After years on Hydroxicarbimide she feels that I would benefit starting Anagralide as I am now on 2500 a day and platelets are esculating again 855 at last count.
JeniMac
in
MPN Voice
3 years ago
Pruritus and peginterferon
I am on weekly injections 90mcg for primary
myelofibrosis
for about 2 years and do not have a lot of itching, just occasional.
I am on weekly injections 90mcg for primary
myelofibrosis
for about 2 years and do not have a lot of itching, just occasional.
caroline_284
in
MPN Voice
3 years ago
Genomics commentary
Rampal
: The major point I would say is that using genomics is now a standard of care and it is fundamental to the care of patients with
myelofibrosis
. We need to go beyond just looking for JAK1/2 mutations; we need to look at all the other mutations available.
Rampal
: The major point I would say is that using genomics is now a standard of care and it is fundamental to the care of patients with
myelofibrosis
. We need to go beyond just looking for JAK1/2 mutations; we need to look at all the other mutations available.
hunter5582
in
MPN Voice
3 years ago
Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue
I would like to ask whether there are such patients with
myelofibrosis
. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly.
I would like to ask whether there are such patients with
myelofibrosis
. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly.
merlisa
in
MPN Voice
3 years ago
Novel Anti-Fibrotic Agent GB2064 in Myelofibrosis
I would hope that in the near future we are going to be talking about prevention studies rather than intervention studies,” https://www.onclive.com/view/mylox-1-trial-opens-to-evaluate-novel-anti-fibrotic-agent-gb2064-in-
myelofibrosis
I would hope that in the near future we are going to be talking about prevention studies rather than intervention studies,” https://www.onclive.com/view/mylox-1-trial-opens-to-evaluate-novel-anti-fibrotic-agent-gb2064-in-
myelofibrosis
Manouche
in
MPN Voice
3 years ago
Was wandering how you find out what stage your MF is
I would think I am probably at early stages as there has been no urgency to start me on any medication for my secondary
myelofibrosis
still just aspirin at the moment . Thanks in advance for any answers x
I would think I am probably at early stages as there has been no urgency to start me on any medication for my secondary
myelofibrosis
still just aspirin at the moment . Thanks in advance for any answers x
indy22
in
MPN Voice
3 years ago
Myelofibrosis and tingling limbs
Myelofibrosis
and tingling limbs I've recently been diagnosed with
myelofibrosis
having had essential thrombocypomia for over 20 years with no symptoms and only low dose aspirin. My white blood cells are normal, my platelets a little low and I'm slightly anemic.
Myelofibrosis
and tingling limbs I've recently been diagnosed with
myelofibrosis
having had essential thrombocypomia for over 20 years with no symptoms and only low dose aspirin. My white blood cells are normal, my platelets a little low and I'm slightly anemic.
Scaredy_cat
in
MPN Voice
3 years ago
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