Hi, my Dad was diagnosed with myelofibrosis last week and we have been given till tomorrow to decide which route of medication to take.
He has the option of ruxolitinib or the
fedora study which is the tablets and injections.
He suffers from depression and anxiety which is why we’re weary of the fedora study option but then I’ve been reading that ruxolitinib can make you more anemic and his is very severe already.
Can anyone share their experiences of either or both with me please to help us decide?
Hi @Sam20785
It’s so difficult isn’t it when both options have side effects.
It sounds like you have done a lot of research. Have you also been able to talk through the options and side effects with your dads team?
We asked as many questions as we could on Thursday and are back tomorrow to discuss further. I guess he doesn’t have to make a definite decision tomorrow if he doesn’t have to.
But we’re getting together as a family this evening to see if we can help come to a decision.
It hard to know how he will react till he tries it.
I just wondered what others experiences on
Both were, just to get an idea.
Hi @Sam20785 I am so glad that you have found us.
A really difficult decision for your dad.
How do you choose between two different unknowns, I don’t know, there will be pros and cons to each.
It sounds as if he has some more questions to ask.
Perhaps if you are all getting together tonight he might write down all his fears, questions and practicalities.
Ultimately the decision is up to your dad and I do not envy him.
You are completely powerless and can only advice and support your dad.
The Blood Cancer UK support Line is there for you all on 0808 2080 888
Our forum is there for you too as a family member so please do use us.
Be kind to yourselves and please do update us.
Hi @Sam20785 I have been on the Fedora trial for about 14 months. It has made a huge difference to me and I feel 100% better compared to when I started the treatment.
I was anemic when I started the trial, I am no longer.
My last BMB showed the fibrosis had not progressed.
The drug is Fedratinib which has been approved for treatment for Myelofibrosis.
Hi ive not been on here for sometime but felt that i need to let people with myelofibrosis that i am and have been on Fedratinib for two and half years and overall feel quite well and hope it carries on helping
