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Fedratinib
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Fedratinib
There has recently been changes in Australia making
Fedratinib
available on compassionate grounds for high risk MF. Has anyone tried it? I've read the research papers available, but none of them address its potential to control extremely high platelet levels. Thanks
There has recently been changes in Australia making
Fedratinib
available on compassionate grounds for high risk MF. Has anyone tried it? I've read the research papers available, but none of them address its potential to control extremely high platelet levels. Thanks
Hatchie
in
MPN Voice
1 month ago
Fedratinib - NICE Appraisal
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of
Fedratinib
for the treatment of myelofibrosis patients with an enlarged spleen or other symptoms.
MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of
Fedratinib
for the treatment of myelofibrosis patients with an enlarged spleen or other symptoms.
AndyT
in
MPN Voice
8 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'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.
Bullace
in
MPN Voice
7 months ago
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Start of SCT journey
After some RBC transfusions, blood tests and BMP I enrolled on FEDORA clinical trial November 2022, taking 400mg
Fedratinib
daily and 250mcg Besremi (Ropeginterferon Alpha 2b) every 2 weeks.
After some RBC transfusions, blood tests and BMP I enrolled on FEDORA clinical trial November 2022, taking 400mg
Fedratinib
daily and 250mcg Besremi (Ropeginterferon Alpha 2b) every 2 weeks.
Flyingsteamer
in
MPN Voice
10 months ago
Myelofibrosis and fedratinib
Fedratinib
is not reducing my spleen although it isn't growing much either. I also find that I often feel queasy quite soon after taking the drug, though this lessens as the day goes on. For me, rux was a miracle drug which made me feel much better. I can't say the same about
fedratinib
.
Fedratinib
is not reducing my spleen although it isn't growing much either. I also find that I often feel queasy quite soon after taking the drug, though this lessens as the day goes on. For me, rux was a miracle drug which made me feel much better. I can't say the same about
fedratinib
.
Bullace
in
MPN Voice
1 year ago
Life beyond Myelofibrosis
I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to
fedratinib
. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was in my late sixties with no other serious health issues.
I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to
fedratinib
. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was in my late sixties with no other serious health issues.
Scaredy_cat
in
MPN Voice
1 year ago
Fedratinib users
How long before your spleen began to shrink
How long before your spleen began to shrink
Scaredy_cat
in
MPN Voice
2 years ago
Update on progress with MF and the FEDORA clinical trial
I started on the pre medication of 400mg/day (in one dose) of
Fedratinib
in capsule form. This was the first 4 week cycle and I am glad to say I had no identifiable side effects.
I started on the pre medication of 400mg/day (in one dose) of
Fedratinib
in capsule form. This was the first 4 week cycle and I am glad to say I had no identifiable side effects.
Flyingsteamer
in
MPN Voice
2 years ago
Recently diagnosed with Primary Myelofibrosis
I was immediately asked if I wanted to join a new research study to evaluate the tolerability, safety and activity of
fedratinib
combined with ropeginterferon alfa-2b. I signed up immediately thinking at least I should get monitored very closely.
I was immediately asked if I wanted to join a new research study to evaluate the tolerability, safety and activity of
fedratinib
combined with ropeginterferon alfa-2b. I signed up immediately thinking at least I should get monitored very closely.
Flyingsteamer
in
MPN Voice
2 years ago
response to fedratinib
Those of you on
fedratinib
: how long before you saw a response to quelling symptoms of MF especially itching? Those of you that had side effects from the drug like nausea diarrhoea etc - how long after you started did they appear?
Those of you on
fedratinib
: how long before you saw a response to quelling symptoms of MF especially itching? Those of you that had side effects from the drug like nausea diarrhoea etc - how long after you started did they appear?
Scaredy_cat
in
MPN Voice
2 years ago
MF and Fedratinib
I would be really grateful for any response on how the switch from rux to
fedratinib
has been for anyone?
I would be really grateful for any response on how the switch from rux to
fedratinib
has been for anyone?
Bullace
in
MPN Voice
2 years ago
Losing faith
normally come here to moan but I feel I need speak to someone since the pandemic it feels like I have completely different team altogether my liver specialist hasn’t seen at all in 2 years and has ignored all communication I have bleeding varices which he used to band every 6 months they put me on
fedratinib
normally come here to moan but I feel I need speak to someone since the pandemic it feels like I have completely different team altogether my liver specialist hasn’t seen at all in 2 years and has ignored all communication I have bleeding varices which he used to band every 6 months they put me on
fedratinib
Leighcox85
in
MPN Voice
2 years ago
Fedratinib
I would be grateful to receive any feedback from anybody currently being treated with
Fedratinib
in relation to myelofibrosis. In particular anybody in the USA where it has been in use for a longer period of time than Great Britain. Regards KB
I would be grateful to receive any feedback from anybody currently being treated with
Fedratinib
in relation to myelofibrosis. In particular anybody in the USA where it has been in use for a longer period of time than Great Britain. Regards KB
kevinbros
in
MPN Voice
2 years ago
(Originally posted by Hunter) "Recent forum presented by our friends at MPN Advocacy & Education International"
Fedratinib
may help symptoms more. Rux is not approved for ET bec it did not work well. ET is less cytokine affected. But itching was improved a lot. HU and PEG on symptoms: minimal benefit with both. High baseline has more benefit.
Fedratinib
may help symptoms more. Rux is not approved for ET bec it did not work well. ET is less cytokine affected. But itching was improved a lot. HU and PEG on symptoms: minimal benefit with both. High baseline has more benefit.
EPguy
in
MPN Voice
2 years ago
Thank you
I’d hoped, earlier in the year, when
fedratinib
was approved and funded, that that might well be a good solution. But no dice. Anyway, thank you all for being there.
I’d hoped, earlier in the year, when
fedratinib
was approved and funded, that that might well be a good solution. But no dice. Anyway, thank you all for being there.
Rachelthepotter
in
MPN Voice
2 years ago
Dr Mesa on MF prognostics, Rux and SCT
." -- -On another approved Jak-i,
fedratinib
, Dr Mesa seems not too impressed vs Rux. <<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#
." -- -On another approved Jak-i,
fedratinib
, Dr Mesa seems not too impressed vs Rux. <<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
Bone pain and chills
I was taking
Fedratinib
and hydroxyurea for a while but my doctor took me off of the
Fedratinib
in October. Last night I had the strangest experience. I went to sleep at my normal time but I was woken up at about 1:30 AM by extreme pain in my legs and my arms.
I was taking
Fedratinib
and hydroxyurea for a while but my doctor took me off of the
Fedratinib
in October. Last night I had the strangest experience. I went to sleep at my normal time but I was woken up at about 1:30 AM by extreme pain in my legs and my arms.
Cja1956
in
MPN Voice
3 years ago
What genetic / genomic information does a BMB give that bloods don’t?
The haematologist I see whom I thought was prepared to try
Fedratinib
for me has changed his mind. ☹️ Its the anaemia ( which both the ruxolitinib and the MF contribute to) thats related to fatigue snd general grottiness. Some of the newer drugs don’t seem to cause so much anaemia.
The haematologist I see whom I thought was prepared to try
Fedratinib
for me has changed his mind. ☹️ Its the anaemia ( which both the ruxolitinib and the MF contribute to) thats related to fatigue snd general grottiness. Some of the newer drugs don’t seem to cause so much anaemia.
Rachelthepotter
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
3 years ago
Paper on Misc Mutations
Fedratinib
is recently approved Jak inhibitor: <<The degree of immunosuppression appears less due to its selectivity for JAK2>> It might be better for vax response and disease resistance, although this is likely a 2ndary issue if it is prescribed.
Fedratinib
is recently approved Jak inhibitor: <<The degree of immunosuppression appears less due to its selectivity for JAK2>> It might be better for vax response and disease resistance, although this is likely a 2ndary issue if it is prescribed.
EPguy
in
MPN Voice
3 years ago
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