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Dr Mesa on MF prognostics, Rux and SCT
<<it’s not clear that there is necessarily a clear advantage between one or the other>> -- https://www.targetedonc.com/view/mesa-discusses-treating-
myelofibrosis
-and-other-mpns#
<<it’s not clear that there is necessarily a clear advantage between one or the other>> -- https://www.targetedonc.com/view/mesa-discusses-treating-
myelofibrosis
-and-other-mpns#
EPguy
in
MPN Voice
2 years ago
BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES
Depletion of the JAK2V617F alle burden, which may lower the risk of progression to
myelofibrosis
, was observed in Besremi treated patients; JAK2V617F allele burden <1% at 6 years was achieved in 19/92 (20.7%) patients in the Besremi arm with baseline allele burden >10%.
Depletion of the JAK2V617F alle burden, which may lower the risk of progression to
myelofibrosis
, was observed in Besremi treated patients; JAK2V617F allele burden <1% at 6 years was achieved in 19/92 (20.7%) patients in the Besremi arm with baseline allele burden >10%.
Manouche
in
MPN Voice
2 years ago
Hand Pain
I have primary
myelofibrosis
. I am getting pains in my knuckles and shooting pains in some fingers and along the side of my hand pretty well every day. My consultant says MPN related bone pain is usually in the big bones, so hand pain is likely to be unrelated.
I have primary
myelofibrosis
. I am getting pains in my knuckles and shooting pains in some fingers and along the side of my hand pretty well every day. My consultant says MPN related bone pain is usually in the big bones, so hand pain is likely to be unrelated.
Wildwood6
in
MPN Voice
2 years ago
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Myelofibrosis potential development
One of my MF buddies in New Zealand sent me the link below about a discovery relating to a potential ’fix’ for
Myelofibrosis
. Early days, but who knows?
One of my MF buddies in New Zealand sent me the link below about a discovery relating to a potential ’fix’ for
Myelofibrosis
. Early days, but who knows?
MFBMT2011
in
MPN Voice
2 years ago
MPN Advocacy & Education international - Patient & Caregivers Conference April 15, 2022
v=WdtM0CA-17A Topic: Demystifying the Molecular Risk Stratification of
Myelofibrosis
Patients, Ellen Ritchie, MD https://www.youtube.com/watch?v=w3gx1kEWDpo Topic: Managing Fatigue and the Importance of Motion, Justin Grinnell, BS https://www.youtube.com/watch?
v=WdtM0CA-17A Topic: Demystifying the Molecular Risk Stratification of
Myelofibrosis
Patients, Ellen Ritchie, MD https://www.youtube.com/watch?v=w3gx1kEWDpo Topic: Managing Fatigue and the Importance of Motion, Justin Grinnell, BS https://www.youtube.com/watch?
hunter5582
in
MPN Voice
2 years ago
Update
Apparently though, in
Myelofibrosis
, counts are slower to improve than in other blood cancers and so far I have been reassured that it's normal. I still hope to get a few days at home before coming back in for more chemotherapy and the actual transplant but I can't set my heart on it.
Apparently though, in
Myelofibrosis
, counts are slower to improve than in other blood cancers and so far I have been reassured that it's normal. I still hope to get a few days at home before coming back in for more chemotherapy and the actual transplant but I can't set my heart on it.
Otterfield
in
MPN Voice
2 years ago
Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022
Dublin •Polycythaemia Vera an overview: Dr Clodagh Keohane, Consultant Haematologist, Mercy Hospital, Cork •Patient talk – my journey with ET: Christine McEvilly •Panel Q&A – questions from the audience •Managing symptoms and support networks: CNS Avril Gleeson, Haematology CNS, Mercy Hospital, Cork •
Myelofibrosis
Dublin •Polycythaemia Vera an overview: Dr Clodagh Keohane, Consultant Haematologist, Mercy Hospital, Cork •Patient talk – my journey with ET: Christine McEvilly •Panel Q&A – questions from the audience •Managing symptoms and support networks: CNS Avril Gleeson, Haematology CNS, Mercy Hospital, Cork •
Myelofibrosis
Mazcd
MPNVoice
in
MPN Voice
2 years ago
Jakavi and Paxlovid interaction
My husband had intermediate
Myelofibrosis
. So far the Jakafi has done wonders. We went through a lot of dose adjustments. Anywhere from 5 mg to 20 mg and are now settled at 15 mg. With Jakafi All symptoms disappeared and he put on a lot of weight.
My husband had intermediate
Myelofibrosis
. So far the Jakafi has done wonders. We went through a lot of dose adjustments. Anywhere from 5 mg to 20 mg and are now settled at 15 mg. With Jakafi All symptoms disappeared and he put on a lot of weight.
Ticotopia
in
MPN Voice
2 years ago
Clinical Trail Updates for Patients
From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have
myelofibrosis
, polycythemia vera, or essential thrombocythemia you won't want to miss this event to hear from our Industry Partners
From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have
myelofibrosis
, polycythemia vera, or essential thrombocythemia you won't want to miss this event to hear from our Industry Partners
hunter5582
in
MPN Voice
2 years ago
Myelofibrosis symptoms?
Info on
Myelofibrosis
Info on
Myelofibrosis
BigStone
in
MPN Voice
2 years ago
Raising Awareness for Polycythemia Vera is Key in Increasing Overall Survival
We were particularly interested in interferon because we had published a study earlier on interferon belonging,
myelofibrosis
-free survival and overall survival. We also looked at hydroxyurea, and these are the most common first-line cytoreductive treatments, and compared that to phlebotomy only.
We were particularly interested in interferon because we had published a study earlier on interferon belonging,
myelofibrosis
-free survival and overall survival. We also looked at hydroxyurea, and these are the most common first-line cytoreductive treatments, and compared that to phlebotomy only.
Manouche
in
MPN Voice
2 years ago
High platelets
I am diagnosed with Prefibrotic
Myelofibrosis
first BMB 3 years ago showed level 1 fibrosis and a recent one has shown no progression age 70 My question is in order to get platelets down should I be increasing Hydroxy or look at alternative treatment.
I am diagnosed with Prefibrotic
Myelofibrosis
first BMB 3 years ago showed level 1 fibrosis and a recent one has shown no progression age 70 My question is in order to get platelets down should I be increasing Hydroxy or look at alternative treatment.
kiwitraveller
in
MPN Voice
2 years ago
By 5 years, about 14% of patients have undetectable JAK2 mutations.
Fewer patients will have not just a blood clot risk, but also less of a transformation to
myelofibrosis
or acute myeloid leukemia, which are long term complications not too many people talk about. » https://www.targetedonc.com/view/new-agents-advance-treatment-options-for-polycythemia-vera
Fewer patients will have not just a blood clot risk, but also less of a transformation to
myelofibrosis
or acute myeloid leukemia, which are long term complications not too many people talk about. » https://www.targetedonc.com/view/new-agents-advance-treatment-options-for-polycythemia-vera
Manouche
in
MPN Voice
2 years ago
Covid Vax Long Term T-cell Immunity
.>> Negatives were <<older patients, those with
myelofibrosis
(MF) and those who had sudden discontinuation of ... ruxolitinib had worse outcomes.>> https://onlinelibrary.wiley.com/doi/10.1111/bjh.17402 -- For MPN patients an uncertain result in this report with possible reduction in t-cell response:
.>> Negatives were <<older patients, those with
myelofibrosis
(MF) and those who had sudden discontinuation of ... ruxolitinib had worse outcomes.>> https://onlinelibrary.wiley.com/doi/10.1111/bjh.17402 -- For MPN patients an uncertain result in this report with possible reduction in t-cell response:
EPguy
in
MPN Voice
2 years ago
Anyone with Chronic Idiopathic Myelofibrosis?
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Mrbeasley
in
MPN Voice
2 years ago
Experience of Fedratinib
Can anybody share their experience of changing from ruxoblitinib to Fedratinib as this is a possibility in my treatment of
myelofibrosis
. Thank you Kevin B
Can anybody share their experience of changing from ruxoblitinib to Fedratinib as this is a possibility in my treatment of
myelofibrosis
. Thank you Kevin B
kevinbros
in
MPN Voice
2 years ago
Anti vaccination
I now have post
Myelofibrosis
AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
I now have post
Myelofibrosis
AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
Mysi
in
MPN Voice
3 years ago
Myelofibrosis diagnosis
Hi, I'm the wife of someone who has just been diagnosed with
myelofibrosis
, his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms.
Hi, I'm the wife of someone who has just been diagnosed with
myelofibrosis
, his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms.
Mrswhyte2019
in
MPN Voice
3 years ago
Question for MPN patients in Canada
NGS is done only if there is a question of diagnosis, ET vs prefibrotic
myelofibrosis
. Thank you all for being on this site, it is a world of knowledge and comfort.
NGS is done only if there is a question of diagnosis, ET vs prefibrotic
myelofibrosis
. Thank you all for being on this site, it is a world of knowledge and comfort.
Planti
in
MPN Voice
2 years ago
Covid and Jakavi.
I was diagnosed with ET in 2016, and I have had
Myelofibrosis
since 2017, so taking Jakavi ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant.
I was diagnosed with ET in 2016, and I have had
Myelofibrosis
since 2017, so taking Jakavi ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant.
Andrew8
in
MPN Voice
3 years ago
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