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Ruxolitinib
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Ruxolitinib and MF without JAK2
I have been diagnosed with MF for just over a year now. I am JAK2 negative, no spleen symptoms and have none of the other common mutations. After 10 months treatment with PEGASYS my condition stabilised without improving. I was strongly advised to go for a BMT. Consequently my Pegasys has been stopped
I have been diagnosed with MF for just over a year now. I am JAK2 negative, no spleen symptoms and have none of the other common mutations. After 10 months treatment with PEGASYS my condition stabilised without improving. I was strongly advised to go for a BMT. Consequently my Pegasys has been stopped
crapaud
in
MPN Voice
10 years ago
Increasing Quality of Life For CLL Patients by tackling Fatigue
Estrov and his team discovered that stimulation of CLL cells results in activation of a factor termed Janus kinase (JAK)-2 and the drug
ruxolitinib
(Jakafi) inhibits this effect. : To test whether
ruxolitinib
would alleviate the symptoms of patients with CLL that otherwise do not require anti-leukemia
Estrov and his team discovered that stimulation of CLL cells results in activation of a factor termed Janus kinase (JAK)-2 and the drug
ruxolitinib
(Jakafi) inhibits this effect. : To test whether
ruxolitinib
would alleviate the symptoms of patients with CLL that otherwise do not require anti-leukemia
AussieNeil
Partner
in
CLL Support
10 years ago
Good morning ,on a very grey wet Sunday ,can I ask you all .do you believe in super foods ?? Have you tried green tea? Or maybe blue berry?
reading books about the perils of our tap waters ,,if it sounded right to me I tried it myself ,,, my blood test results began to settle down ,,no more venesection ...my prof,also team doctors and nurses noticed the improvement in my skin ..also my mobility is better ,as my new drug on the Majic trial ,
ruxolitinib
reading books about the perils of our tap waters ,,if it sounded right to me I tried it myself ,,, my blood test results began to settle down ,,no more venesection ...my prof,also team doctors and nurses noticed the improvement in my skin ..also my mobility is better ,as my new drug on the Majic trial ,
ruxolitinib
Twinkly
in
MPN Voice
10 years ago
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Ruxolitinib (Jakavi) for the treatment of Myelofibrosis (MF) - Accepted for use in NHS Scotland
For patients with PV,
Ruxolitinib
is available via the MAJIC studyhttp://www.mpdvoice.org.uk/research/the-newest-options/majic-trial-using-
ruxolitinib
/ which currently has 78 slots still available.
For patients with PV,
Ruxolitinib
is available via the MAJIC studyhttp://www.mpdvoice.org.uk/research/the-newest-options/majic-trial-using-
ruxolitinib
/ which currently has 78 slots still available.
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Ruxolitinib for PV
Are there many people on here who are taking Ruxo for PV in UK, how are you doing on it, are you having any side effects, how long have you been on it and what dose are you on. Was it hard to get it in UK as I understand it is not yet approved, did you have to "fail" on Hydra and Interferon. I am looking
Are there many people on here who are taking Ruxo for PV in UK, how are you doing on it, are you having any side effects, how long have you been on it and what dose are you on. Was it hard to get it in UK as I understand it is not yet approved, did you have to "fail" on Hydra and Interferon. I am looking
ainslie
in
MPN Voice
10 years ago
Pomelo and drug metabolism
I was offered some pomelo by a neighbour who was peeling one but declined as it looked very like grapefruit and I take
ruxolitinib
. Does anyone know if this fruit should be avoided in the same way as grapefruit or grapefruit juice?
I was offered some pomelo by a neighbour who was peeling one but declined as it looked very like grapefruit and I take
ruxolitinib
. Does anyone know if this fruit should be avoided in the same way as grapefruit or grapefruit juice?
skodaguy
in
MPN Voice
10 years ago
Ruxolitinib side effects
I have the chance of possibly going on the
Ruxolitinib
trial, but am wondering of anyone out there has noticed/ suffered side effects.
I have the chance of possibly going on the
Ruxolitinib
trial, but am wondering of anyone out there has noticed/ suffered side effects.
Loubprv
Volunteer
in
MPN Voice
10 years ago
Vomiting and Extreme Cold
My husband has Myelofibrosis and a week ago had to have a bone marrow biopsy as the
Ruxolitinib
appears to have stopped working for him. Apart from fatigue he is feeling extremely cold often (even in warm weather) and has been vomiting his food up from time to time.
My husband has Myelofibrosis and a week ago had to have a bone marrow biopsy as the
Ruxolitinib
appears to have stopped working for him. Apart from fatigue he is feeling extremely cold often (even in warm weather) and has been vomiting his food up from time to time.
Hidden
in
MPN Voice
10 years ago
MPDlife - the newsletter for people with MPNs
interesting articles: •Rapid changes in MPN research and treatment options – Professor Claire Harrison reports on the European School of Haematology MPN meeting held in Estoril, Portugal in October 2014, and tells us about the new scientific developments •An update on the MAJIC study which is testing
Ruxolitinib
interesting articles: •Rapid changes in MPN research and treatment options – Professor Claire Harrison reports on the European School of Haematology MPN meeting held in Estoril, Portugal in October 2014, and tells us about the new scientific developments •An update on the MAJIC study which is testing
Ruxolitinib
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Interesting and positive news on Ruxolotinid
Subject: Paper: JAK2V617F Complete Molecular Remission in Long-Term Follow-up of Patients with Polycythemia Vera and Essential Thrombocythemia Treated with
Ruxolitinib
https://ash.confex.com/ash/2014/webprogram/Paper71398.html This link was emailed to me by an American friend.
Subject: Paper: JAK2V617F Complete Molecular Remission in Long-Term Follow-up of Patients with Polycythemia Vera and Essential Thrombocythemia Treated with
Ruxolitinib
https://ash.confex.com/ash/2014/webprogram/Paper71398.html This link was emailed to me by an American friend.
Dodders
in
MPN Voice
10 years ago
Myelofibrosis
Later the specialist arrived and had some bad news in that the drugs (
ruxolitinib
) had basically stopped working. There does not appear to be much left for my husband other than radiation or chemo, neither of which will be pleasant. Anyway, with that new it was forgotten about the masses.
Later the specialist arrived and had some bad news in that the drugs (
ruxolitinib
) had basically stopped working. There does not appear to be much left for my husband other than radiation or chemo, neither of which will be pleasant. Anyway, with that new it was forgotten about the masses.
Hidden
in
MPN Voice
10 years ago
Yesterday I visited the cancer help centre at Cambridge ,I was invited to a talk 13.11.14.at 5till8. By Pat Peat of cancer options.
interesting , I'm all for keeping an open mind ,as many of you know who read my notes and replys ..my blood counts have been good for 18 months since I changed my eating and drinking patterns ,I have only temporary fatigue ,sleep patterns are regular ,I'm brighter in my head since I was given the new drug
ruxolitinib
interesting , I'm all for keeping an open mind ,as many of you know who read my notes and replys ..my blood counts have been good for 18 months since I changed my eating and drinking patterns ,I have only temporary fatigue ,sleep patterns are regular ,I'm brighter in my head since I was given the new drug
ruxolitinib
Twinkly
in
MPN Voice
10 years ago
Hi All
Being 'treated' with
Ruxolitinib
at 15mg twice daily. I suffer from low platelet counts but my other bloods are reasonably okay and stable. Some days I am very fatigued but other days feel reasonably okay. Sometimes itchy sometimes not.
Being 'treated' with
Ruxolitinib
at 15mg twice daily. I suffer from low platelet counts but my other bloods are reasonably okay and stable. Some days I am very fatigued but other days feel reasonably okay. Sometimes itchy sometimes not.
colin1947
in
MPN Voice
10 years ago
Low Platelets
He has been taking 20mg of
Ruxolitinib
daily, but that is now going to be halved to try and bring the platelets back up. Does anyone else have experience of spleen cysts? Looking forward to some replies.
He has been taking 20mg of
Ruxolitinib
daily, but that is now going to be halved to try and bring the platelets back up. Does anyone else have experience of spleen cysts? Looking forward to some replies.
cheridiane
in
MPN Voice
10 years ago
A question for Maz , hoping you can help .
Am on
Ruxolitinib
but wanting to query IBS diagnosis as after looking for help with IBS have been told that because I'm of slight build , have occasional high liver counts , failed to have children , osteoporosis , PV and tiredness its more likely I have Coeliac disease than IBS .
Am on
Ruxolitinib
but wanting to query IBS diagnosis as after looking for help with IBS have been told that because I'm of slight build , have occasional high liver counts , failed to have children , osteoporosis , PV and tiredness its more likely I have Coeliac disease than IBS .
maestromaverick
in
MPN Voice
10 years ago
Ruxolitinib and tiredness.
Have been on
Ruxolitinib
for nearly eight months and initially feeling great , tiredness is descending on me with a vengeance . Never felt so tired even on hydroxy and that's saying something .
Have been on
Ruxolitinib
for nearly eight months and initially feeling great , tiredness is descending on me with a vengeance . Never felt so tired even on hydroxy and that's saying something .
maestromaverick
in
MPN Voice
10 years ago
Hi there how you doing on ruxolitinib ?I have written a reply ,,,hope it's some help .I seem to be well. But life changes are needed ,,,
I hope it helps ,those who are not doing so well on this trial drug ..
I hope it helps ,those who are not doing so well on this trial drug ..
Twinkly
in
MPN Voice
10 years ago
Ruxolitinib filed to FDA for PV
I noticed that
ruxolitinib
has been filed to the FDA for treatment for PV. Looks like they will publish results december time. Results appear impressive with 88.5% acheiving Complete hemalogitcal remission after 48 weeks, i wonder this compares with hydroxycarbomide?
I noticed that
ruxolitinib
has been filed to the FDA for treatment for PV. Looks like they will publish results december time. Results appear impressive with 88.5% acheiving Complete hemalogitcal remission after 48 weeks, i wonder this compares with hydroxycarbomide?
Paul42
in
MPN Voice
10 years ago
Food Glorious Food
Well that was until I started taking
Ruxolitinib
3 weeks since. I'm constantly hungry and clearing my plate every time. And I'm seeking out snacks inbetween which I rarely did before. It's a really weird change which is kind of comical but I can't keep stuffing my cakehole at this rate.
Well that was until I started taking
Ruxolitinib
3 weeks since. I'm constantly hungry and clearing my plate every time. And I'm seeking out snacks inbetween which I rarely did before. It's a really weird change which is kind of comical but I can't keep stuffing my cakehole at this rate.
JediReject
in
MPN Voice
10 years ago
WAITING FOR MY 'GOLDEN TICKET'
Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto
Ruxolitinib
. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you.
Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto
Ruxolitinib
. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you.
JediReject
in
MPN Voice
10 years ago
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