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Myelofibrosis
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myelofibrosis
Hello I was wondering if anyone’s ET had progressed to
myelofibrosis
, what were the symptoms and was it diagnosed with a BMB? Thankyou
Hello I was wondering if anyone’s ET had progressed to
myelofibrosis
, what were the symptoms and was it diagnosed with a BMB? Thankyou
Juliet46
in
MPN Voice
1 month ago
Myelofibrosis
I have been taking Jakavi for three years after diagnosis of post-PV
myelofibrosis
. I get very breathless and can't walk far, but seem to cope reasonably with other activities given my age (coming up 82).
I have been taking Jakavi for three years after diagnosis of post-PV
myelofibrosis
. I get very breathless and can't walk far, but seem to cope reasonably with other activities given my age (coming up 82).
lucieboo
in
MPN Voice
2 months ago
Myelofibrosis
If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://thebloodline.org/TBL/165e165/ Cheers
If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://thebloodline.org/TBL/165e165/ Cheers
william-Indo
in
MPN Voice
3 months ago
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Palbociclib for MF reducing fibrosis and more
"The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments (Rux etc) for
myelofibrosis
cannot."
"The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments (Rux etc) for
myelofibrosis
cannot."
EPguy
in
MPN Voice
3 months ago
SCT For MF Eligibility
https://www.patientpower.info/myeloproliferative-neoplasms/is-transplant-eligibility-changing-for-
myelofibrosis
?ap=nl2160&rhid=62d861799e49439ac60c4157&mui=&lid=6549040
https://www.patientpower.info/myeloproliferative-neoplasms/is-transplant-eligibility-changing-for-
myelofibrosis
?ap=nl2160&rhid=62d861799e49439ac60c4157&mui=&lid=6549040
MFBMT2011
in
MPN Voice
3 months ago
What are the stages of myelofibrosis
She gave us an information pamphlet to read, which we found very useful, but having read through a few posts on this site, I am seeing references to stage 2 and stage3
myelofibrosis
.
She gave us an information pamphlet to read, which we found very useful, but having read through a few posts on this site, I am seeing references to stage 2 and stage3
myelofibrosis
.
Richinspirit
in
MPN Voice
2 days ago
Jakafi - Chronic Myelofibrosis
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary
Myelofibrosis
on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting.
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary
Myelofibrosis
on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting.
Fresa7
in
MPN Voice
24 days ago
myelofibrosis
Ive been on watch and wait now for a year or so just taking aspirin ,but I read somewhere that some treatment can stop the disease progressing ,anyone know if this is correct,thanks.
Ive been on watch and wait now for a year or so just taking aspirin ,but I read somewhere that some treatment can stop the disease progressing ,anyone know if this is correct,thanks.
glyndale
in
MPN Voice
7 months ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary
myelofibrosis
.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary
myelofibrosis
.
PhysAssist
in
MPN Voice
5 months ago
Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia
A CCHR was reached by 69% overall, independently of any degree of MR achieved; conversely, a DMR correlated with longer duration of CCHR and, most importantly, with reduced rate of progression to
myelofibrosis
and with longer
myelofibrosis
-free, event-free and progression-free survival.
A CCHR was reached by 69% overall, independently of any degree of MR achieved; conversely, a DMR correlated with longer duration of CCHR and, most importantly, with reduced rate of progression to
myelofibrosis
and with longer
myelofibrosis
-free, event-free and progression-free survival.
Manouche
in
MPN Voice
1 month ago
Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
4 months ago
Useful resources abt MPNs.
https://www.mympnteam.com/resources/primary-
myelofibrosis
-causes-symptoms-and-treatments
https://www.mympnteam.com/resources/primary-
myelofibrosis
-causes-symptoms-and-treatments
Gipsy123
in
MPN Voice
7 months ago
Itching in Myelofibrosis
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
Bullace
in
MPN Voice
4 months ago
A little bit scared!
Hello, I have just been diagnosed with Intermediate
Myelofibrosis
, feeling very anxious and scared about my outlook, on day 3 of Ruxolitinib so far I seem to be tolerating it ok, getting my head around this diagnosis and trying to navigate everything I should be doing is quite overwhelming, hoping to
Hello, I have just been diagnosed with Intermediate
Myelofibrosis
, feeling very anxious and scared about my outlook, on day 3 of Ruxolitinib so far I seem to be tolerating it ok, getting my head around this diagnosis and trying to navigate everything I should be doing is quite overwhelming, hoping to
Teddylover1
in
MPN Voice
4 months ago
triple negative pre-fibrotic primary Myelofibrosis with SH2B3 mutation
Anyways, after 15 months of testing, I now have a diagnosis of triple negative pre-fibrotic primary
Myelofibrosis
. I would love to connect with those who are in the same boat as me!
Anyways, after 15 months of testing, I now have a diagnosis of triple negative pre-fibrotic primary
Myelofibrosis
. I would love to connect with those who are in the same boat as me!
Dekou
in
MPN Voice
3 months ago
Covid and Myelofibrosis
hi I’ve just tested positive for Covid, I have post pv
Myelofibrosis
. I’m waiting on 111 to see whether I need to have some treatment. What are your thoughts and is this necessary now? I think it’s going to be a long wait, so it might be tomorrow. Thank you Mal
hi I’ve just tested positive for Covid, I have post pv
Myelofibrosis
. I’m waiting on 111 to see whether I need to have some treatment. What are your thoughts and is this necessary now? I think it’s going to be a long wait, so it might be tomorrow. Thank you Mal
Mal42
in
MPN Voice
6 months ago
What does this article mean about transplant outcomes vs Jak Inhibitors??
https://www.hematologyadvisor.com/home/topics/general-hematology/jak-inhibitor-upfront-hct-stem-cell-
myelofibrosis
-worse-survival/
https://www.hematologyadvisor.com/home/topics/general-hematology/jak-inhibitor-upfront-hct-stem-cell-
myelofibrosis
-worse-survival/
Aneliv9
in
MPN Voice
7 months ago
Choices.
My name is Tania - I was diagnosed with
myelofibrosis
8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here.
My name is Tania - I was diagnosed with
myelofibrosis
8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here.
Petsgalore
in
MPN Voice
2 months ago
Myelofibrosis - pain in quad muscles
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2
myelofibrosis
are experiencing pain in their quads (thigh muscles) when walking or running.
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2
myelofibrosis
are experiencing pain in their quads (thigh muscles) when walking or running.
TimGS
in
MPN Voice
2 months ago
Travel Insurance
Does anyone know of any insurance companies that will cover PRE Fibrotic
Myelofibrosis
. Thanks in advance for any help or information you can give me.
Does anyone know of any insurance companies that will cover PRE Fibrotic
Myelofibrosis
. Thanks in advance for any help or information you can give me.
NannaFlo
in
MPN Voice
8 months ago
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