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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
15 days ago
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
17 days 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
2 days ago
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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
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
4 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
2 months 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
1 month 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
2 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
4 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
3 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
6 months ago
Mylofibrosis new guidelines diagnosis and prognostic
Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluation of
myelofibrosis
https://onlinelibrary.wiley.com/doi/10.1111/bjh.19164 Cheers
Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluation of
myelofibrosis
https://onlinelibrary.wiley.com/doi/10.1111/bjh.19164 Cheers
william-Indo
in
MPN Voice
6 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
1 month 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
17 days ago
Can I help
Hi I am Harry and have so far survived
Myelofibrosis
for 6 years. It has been a very bumpy ride with no guarantee that you will be still around next week I have been lucky to have very good medical resources that have kept me going If my experiences can help anyone please contact me Harry
Hi I am Harry and have so far survived
Myelofibrosis
for 6 years. It has been a very bumpy ride with no guarantee that you will be still around next week I have been lucky to have very good medical resources that have kept me going If my experiences can help anyone please contact me Harry
harryandliz1
in
MPN Voice
4 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
The study included 252 JAK inhibitor-naive patients with intermediate-2- or high-risk
myelofibrosis
with measurable splenomegaly and evidence of
myelofibrosis
symptoms. Median participant age was 69-70 years, and most were men.
The study included 252 JAK inhibitor-naive patients with intermediate-2- or high-risk
myelofibrosis
with measurable splenomegaly and evidence of
myelofibrosis
symptoms. Median participant age was 69-70 years, and most were men.
PhysAssist
in
MPN Voice
5 months ago
life insurance whilst waiting for official diagnosis
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or
myelofibrosis
. I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or
myelofibrosis
. I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
Newbie16
in
MPN Voice
6 months ago
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of
myelofibrosis
.
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of
myelofibrosis
.
Manouche
in
MPN Voice
9 months ago
Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to
myelofibrosis
(MF) but later reverted to a PV phenotype.
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to
myelofibrosis
(MF) but later reverted to a PV phenotype.
Manouche
in
MPN Voice
6 months ago
Immune Responses + Autoimmune Myelofibrosis
Fristly, the post "MF reverts to PV" from Manouche possibly could be explained by the article link in the post "
Myelofibrosis
: New Guidlines..." post from William-Indo.
Fristly, the post "MF reverts to PV" from Manouche possibly could be explained by the article link in the post "
Myelofibrosis
: New Guidlines..." post from William-Indo.
LongETinUS
in
MPN Voice
6 months ago
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