Hello everyone im on my last week without ruxolitinib and have just 10mgs of steroids .To be honest its not been too bad except for symptoms to return but i only have 3 days to go qnd i am excited to go on new drug and as i said before im first one on it…i have researched it well and although there are quite a few side effects i cant wait …i will update you in couple weeks take care everyone
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Oh @Suzyq please do tell us how you get on with this new drug, as you say exciting, but I expect scary too.
You are a trail blazer, look after yourself and keep posting
I’m glad everything is going well so far. Please keep us updated x
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Hi Suzyq hope you still doing well. My husband came off Ruxolitinib and started on Fedratinib a few weeks ago. All is going well at the moment. Is this the drug you are starting
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Unfortunately its not in my hospital pharmacy so i have to wait anoth week…how is you husband on it .
What part of the country are you from
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Yay started fedratinib today and i have everthing crossed they work for me …my hematologist has been so good and informative even though i have been researching this new drug for a long time will keep updating my progress
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That’s really good news! You must be relieved. Please keep us updated on how it’s going x
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Sounds like you’re really positive about it which can only help. I think we’re all excited to hear how you get on. There are so many new developments in blood cancer treatment now and new hope for us all. Good luck and keep in touch.
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Hi @Suzyq. Thank you so much for updating us. As a fellow myelofibrosis patient, I shall be very interested to hear how you get on. You have been a very patient patient throughout this whole process! Warm wishes. Willow X
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Hi Goldie been on 400 mgs for a week and getting side effects not very pleasant did your husband get side effects such as musle spasms and bone pain?
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Hi @Suzyq have you told your medical team about your side effects so they know what is going on for you and it just might be something that they can help with.
Your side effects must be nasty for you.
Please let us know how you get on and be kind to yourself
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Hi Erica i researched this drug so much and these side effects are common but i think agter a few weeks then it settles down im keeping a record to show my consultant i have been on it a week so fingers crossed things will get better
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Take care and keep us posted x
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Hi @Suzyq, sounds like you are doing all the right things and communicating to your team. I really hope the side effects improve and do take care.
Gemma
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Good evening
I joined this forum earlier today.
I have myelofibrosis and am looking for information on the experience of Fedratinib
as there is a possibility that this will be my next course of treatment.
My understanding is that Ferdratinib was approved in the USA by the FDA in Nov 2019 and England by NICE in Nov 2021.
I have written to contacts in the USA to request information , which upon receipt I will share with the forum.
Regards
KBROS
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Hi @KBROZ and welcome to the forum. Sounds like it’s quite a new treatment?
Hopefully someone else may be able to share their knowledge with you. Our nurse advisors @GemmaBloodCancerUK and @LauranBloodCancerUK have been tagged in my response and they may know more.
How are things for you at the moment?
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Hi Nichola75
Thank you or your prompt reply.
At the hospital I am treated in London there is one other person taking the drug but I understand there may be others in the UK.
I am fine, thank you for asking
Regards
KBROZ
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Hi @KBROZ a great big welcome to our forum and you definitely have more knowledge than me.
@Nichola75 has given you a great response and let’s hope others can.
I look forward to hearing more about you.
Take care and please keep posting what is going on for you.
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Thank you Erica
Your comments are most appreciated.
I will use my best endeavours to assist.
I have learnt that there are at least two members with experience of this new drug on this forum.
They are true trail blazers!!
Regards
KBROZ
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