Myleofibrosis

Hello everyone. I’m new to this site as I’ve only just found it. My husband was diagnosed with Myleofibrosis in 2017 and until having the covid jab, was nice and stable. Since 2020 he has got worse. He’s been on Ruxilitnib but that only worked for a year or so. It did reduce his spleen size but then he need more blood transfusions which he hated as he still worked full time so was hard to fit them in. Anyway he’s been momentilib since June which doesn’t appear to be working. His bloods are all over the place. His hb last week was 67 and platelets were 16 and white cells 69 so goodness knows what is happening. Has anyone got any experience of this please ?

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Hi @Debsy70 a great big welcome to our forum and i hope others may be able their experiences.
I attach the Blood Cancer UK information on Myleofibrosis for you both.
Myelofibrosis (MF) - signs and symptoms and diagnosis | Blood Cancer UK
You obviously sound concerned about your husband and I wonder how you are both coping since 2020 and Covid isolation and his diagnosis,
It cannot have been easy for you both.
I have found it is an emotionally, psychologically and practical rollercoaster for both parties.
I have found it is best to ask my medical team all my fears, questions and practicalities.
I also write down everything I want to say first.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Look after and be kind to yourselves and please do keep posting I look forward to hearing more about you both.

Thank you so much.

We are very concerned as we have been told he’s deteriorating but not to what degree.
We have a meeting with his consultant on Wednesday and I’m going to ask about him maybe going back on the Ruxi as he did well on that. The only downside was needing more blood transfusions which my husband hates.
I don’t think this compassionate drug Momonotilib is working at all for him sadly.

Kind Regards
Debbie

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Hi @Debsy70
I do really find it helps me to write down all my fears, questions and practicalities down before appointments and make sure I get answers to them all.
Please do let us know how you get on.
Be kind to yourselves and please do keep posting, this must be really emotionally, psychologically, physically and practically exhausting for you.

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I will do. Thanks for the advice.

Yes it’s getting very draining for me. Unfortunately I usually break down when I’m in the office as it’s the only time I’m away from my husband. I try to stay positive in front of him. Or I cry walking Ollie (our dog)
I have wrote some questions down already.
I’ll let u know how we get on x

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Hello @Debsy70
Thank you for posting - Welcome to the Forum.
I am sorry to read about your husbands diagnosis and treatments so far, and the blood counts are always changing.
From what you have written, it does sound like you are both very aware of his blood counts and what they should/shouldn’t be.
Have his treatment team discussed any other treatment options after the Momelotinib? There may be clinical trials available, so do ask his team, or you could self refer to our clinical trials team, and they can look into things for him. May I ask why he hates the transfusions so much? Is it the time it takes, and just ‘sitting around’ that he doesn’t like or does he have phobias? I am sure that if he made it known to the Consultant, there would be a way to help him get through this part. Sadly, transfusion dependency can be a part of MF and it’s treatment plan.
Are you both being supported by a nurse specialist/cancer support worker? I think it may help to have extra support at the moment, do ask on Wednesday if there is a clinical psychologist that he can be referred to. I think that you also would benefit from some type of counselling and support, as how you are feeling is completely understandable. Sending you a virtual hug!
Do know that you can call our Support Line to talk to one of us, even if you are out on a dog walk - 0808 2080 888 we can listen and support you too.
Keep in touch - best wishes, Heidi.

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Hi

Well he’s having a platelet transfusion and blood on wed as his bloods today were very very low.
He just doesn’t like sitting in Christie’s all day. He sees his cancer as really inconvenient lol
Well we are going to ask his consultant what his plan is going forward. He was really feeling good on the ruxilitinib so going to ask about him going back in that. If he’s going to need blood transfusions anyway, he may aswell be back in that. At least he felt well on it.
Thank you for your offer of support. I will definitely take you up on that in the very near future I’m sure :cry:

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