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Experiences with
Myeloproliferative neoplasm (MPN)
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Any PBCers with PBC and Myeloproliferative Neoplasm? e.g. Essential Thrombocythemia
Hi All, toddyboo here, I was just wondering if there were any PBCers out there who have PBC along with an MPN? The reason I ask is I have essential thrombocythemia and have just been diagnosed with PBC and wanted to see if there were any PBCers who also might have a similar diagnoses.
Hi All, toddyboo here, I was just wondering if there were any PBCers out there who have PBC along with an MPN? The reason I ask is I have essential thrombocythemia and have just been diagnosed with PBC and wanted to see if there were any PBCers who also might have a similar diagnoses.
Toddyboo
in
PBCers Organization
6 months ago
New Diagnosis of PBC and Prescribed URSO
My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (
myeloproliferative
neoplasm
) called essential thrombocythemia (which is a form of blood cancer as well as a gene mutation called JAK2 v617f).
My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (
myeloproliferative
neoplasm
) called essential thrombocythemia (which is a form of blood cancer as well as a gene mutation called JAK2 v617f).
Toddyboo
in
PBC Foundation
7 months ago
A little lost
Yesterday was the first time I went back to see the original NHS haematologist who is now saying he believes its not a
myeloproliferative
neoplasm
(MPN), but a genetic disorder (G6PD), however, the private haematologist already knew I had the disorder and ruled that out as a reason for my high platelets
Yesterday was the first time I went back to see the original NHS haematologist who is now saying he believes its not a
myeloproliferative
neoplasm
(MPN), but a genetic disorder (G6PD), however, the private haematologist already knew I had the disorder and ruled that out as a reason for my high platelets
inlimbo123
in
MPN Voice
1 year ago
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INCA033989 phase 1 clinical trial is recruiting patients
MF is a rare but chronic
myeloproliferative
neoplasm
characterized by bone marrow fibrosis. INCA033989 is a newly discovered high-affinity, fully human monoclonal antibody that selectively targets mutant calreticulin-mediated oncogenesis.
MF is a rare but chronic
myeloproliferative
neoplasm
characterized by bone marrow fibrosis. INCA033989 is a newly discovered high-affinity, fully human monoclonal antibody that selectively targets mutant calreticulin-mediated oncogenesis.
flamboyant_hawking
in
MPN Voice
1 year ago
MPN Specialized Care and Technology: Digital Health and Symptom Management
[/i] Nearly 80% of patients living with a
myeloproliferative
neoplasm
(MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me?
[/i] Nearly 80% of patients living with a
myeloproliferative
neoplasm
(MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me?
hunter5582
in
MPN Voice
2 years ago
Webinar – MPN Specialized Care and Technology: Digital Health and Symptom Management
Nearly 80% of patients living with a
myeloproliferative
neoplasm
(MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join this webinar moderated by a patient to learn about: 1.
Nearly 80% of patients living with a
myeloproliferative
neoplasm
(MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join this webinar moderated by a patient to learn about: 1.
Mazcd
MPNVoice
in
MPN Voice
2 years ago
Webinar – MPN Specialized Care and Technology: The Ongoing Role of Telemedicine
Is the use of technology accelerating progress in
myeloproliferative
neoplasm
(MPN) care? Why should MPN patients keep telemedicine in their toolbox post-COVID?
Is the use of technology accelerating progress in
myeloproliferative
neoplasm
(MPN) care? Why should MPN patients keep telemedicine in their toolbox post-COVID?
Mazcd
MPNVoice
in
MPN Voice
2 years ago
Interesting
PV is the most common
myeloproliferative
neoplasm
(MPN) and a long-term, potentially life-threatening disease with limited treatment options.
PV is the most common
myeloproliferative
neoplasm
(MPN) and a long-term, potentially life-threatening disease with limited treatment options.
wateron
in
MPN Voice
2 years ago
Webinar – Can I get the Best MPN Care?
PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 9 August 2022, entitled “Can I Get the Best
Myeloproliferative
Neoplasm
(MPN) Care?”
PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 9 August 2022, entitled “Can I Get the Best
Myeloproliferative
Neoplasm
(MPN) Care?”
Mazcd
MPNVoice
in
MPN Voice
2 years ago
How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?
Upcoming presentation by Dr. Claire Harrison w/ guest Dr. Nicole rochester. [i]With so many exciting developments in the research pipeline for myeloproliferative neoplasms (MPNs), how can I access the best possible MPN care? Will there be alternate treatment strategies for MPN patients who have failed
Upcoming presentation by Dr. Claire Harrison w/ guest Dr. Nicole rochester. [i]With so many exciting developments in the research pipeline for myeloproliferative neoplasms (MPNs), how can I access the best possible MPN care? Will there be alternate treatment strategies for MPN patients who have failed
hunter5582
in
MPN Voice
2 years ago
Questions about AEs on Interferons w.r.t. liver enzymes
Thanks “Pegylated interferon alpha – 2a is clinically effective and tolerable in
myeloproliferative
neoplasm
patients treated off clinical trial”, Leukeamia Research 54 (2017) 73-77, coauthored by Rueben Mesa: For the cohort of 75 patients there was “transaminitis at grade 1 in 6 patients (8%) and grade
Thanks “Pegylated interferon alpha – 2a is clinically effective and tolerable in
myeloproliferative
neoplasm
patients treated off clinical trial”, Leukeamia Research 54 (2017) 73-77, coauthored by Rueben Mesa: For the cohort of 75 patients there was “transaminitis at grade 1 in 6 patients (8%) and grade
LongETinUS
in
MPN Voice
2 years ago
An antibody for myelofibrosis – “that’s a true discovery”
In about 20% of people with myelofibrosis, if left unchecked, this severe type of
myeloproliferative
neoplasm
(MPN) can transform to acute leukaemia. “We still don’t know why some patients progress quickly and some slowly.
In about 20% of people with myelofibrosis, if left unchecked, this severe type of
myeloproliferative
neoplasm
(MPN) can transform to acute leukaemia. “We still don’t know why some patients progress quickly and some slowly.
socrates_8
in
MPN Voice
2 years ago
Cut-off point for disease versus no disease for JAK2V617F mutation positive individuals
« …Furthermore, a novel observation was that no individuals with a
myeloproliferative
neoplasm
were found in cases with an allele burden below 2%, which may represent a cut-off point of disease versus no disease for JAK2V617F mutation positive individuals ». https://www.ncbi.nlm.nih.gov/pmc/articles/
« …Furthermore, a novel observation was that no individuals with a
myeloproliferative
neoplasm
were found in cases with an allele burden below 2%, which may represent a cut-off point of disease versus no disease for JAK2V617F mutation positive individuals ». https://www.ncbi.nlm.nih.gov/pmc/articles/
Manouche
in
MPN Voice
3 years ago
Excess Mortality Higher in Younger Patients With MPNs vs Older Patients
https://www.cancertherapyadvisor.com/home/news/conference-coverage/american-society-of-hematology-ash/ash-2021/
myeloproliferative
-
neoplasm
-excess-mortality-younger-patient/
https://www.cancertherapyadvisor.com/home/news/conference-coverage/american-society-of-hematology-ash/ash-2021/
myeloproliferative
-
neoplasm
-excess-mortality-younger-patient/
EPguy
in
MPN Voice
3 years ago
Castle Walt Disney designed the castle he built at Disney Land. This castle welcomes you to the outskirts of the diamond village of Toledo.
My name is Anna, I was officially diagnosed by BMB of a
Myeloproliferative
Neoplasm
, Essential Thrombocytosis in December 2011. I have been aware of the condition due to the consistently high platelets counts since I got a DVT while travelling in 1999.
My name is Anna, I was officially diagnosed by BMB of a
Myeloproliferative
Neoplasm
, Essential Thrombocytosis in December 2011. I have been aware of the condition due to the consistently high platelets counts since I got a DVT while travelling in 1999.
Gordito
in
MPN Voice
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
(I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F
myeloproliferative
neoplasm
eradication by a novel interferon/arsenic therapy involves PML" and "A knockout combination for MPN stem cells" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7579737/ https://www.ncbi.nlm.nih.gov
(I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F
myeloproliferative
neoplasm
eradication by a novel interferon/arsenic therapy involves PML" and "A knockout combination for MPN stem cells" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7579737/ https://www.ncbi.nlm.nih.gov
EPguy
in
MPN Voice
3 years ago
The Leukemia & Lymphoma Society’s National Patient Registry COVID-19 vaccination antibody results - published today (Greenberg et al)
COVID-19 Vaccine Response by Blood Cancer Diagnosis
Percent of patients with detectable antibodies
Smoldering multiple myeloma 100 Hairy cell leukemia 100 Hodgkin lymphoma 98 Chronic myeloid leukemia 97 Myelodysplastic syndrome/
myeloproliferative
neoplasm
97 Multiple myeloma 95 Acute myeloid
COVID-19 Vaccine Response by Blood Cancer Diagnosis
Percent of patients with detectable antibodies
Smoldering multiple myeloma 100 Hairy cell leukemia 100 Hodgkin lymphoma 98 Chronic myeloid leukemia 97 Myelodysplastic syndrome/
myeloproliferative
neoplasm
97 Multiple myeloma 95 Acute myeloid
lankisterguy
Volunteer
in
CLL Support
3 years ago
“Interferon” with MPN hematopoietic stem cells
« In this issue of Blood, Rao et al reveal important insights into how hematopoietic stem cell (HSC) subpopulations contribute to
myeloproliferative
neoplasm
(MPN) pathogenesis, and how these populations are perturbed in the setting of pegylated-interferon (pegIFN) therapy.1 The advent of pegylated
« In this issue of Blood, Rao et al reveal important insights into how hematopoietic stem cell (HSC) subpopulations contribute to
myeloproliferative
neoplasm
(MPN) pathogenesis, and how these populations are perturbed in the setting of pegylated-interferon (pegIFN) therapy.1 The advent of pegylated
Manouche
in
MPN Voice
3 years ago
Clear simple article on good diet plan
https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-
Myeloproliferative
-
Neoplasm
-MPN-Patient.pdf I thought the above link was well presented and offers good ideas
https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-
Myeloproliferative
-
Neoplasm
-MPN-Patient.pdf I thought the above link was well presented and offers good ideas
Mostew
in
MPN Voice
4 years ago
Curative approaches of MPN
., 2018) may allow outpatient therapy, paving the way toward eradication of JAK2V617F MPN cells. » https://rupress.org/jem/article/218/2/e20201268/211476/JAK2V617F-
myeloproliferative
-
neoplasm
-eradication
., 2018) may allow outpatient therapy, paving the way toward eradication of JAK2V617F MPN cells. » https://rupress.org/jem/article/218/2/e20201268/211476/JAK2V617F-
myeloproliferative
-
neoplasm
-eradication
Manouche
in
MPN Voice
4 years ago
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