Hi on monday i was diagnosed with myelofibrosis after having et for 26 year im in shock and scared
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Hiya , @Lttlmystry
can only say how sorry I am to hear your news
It must be really scary and I can only imagine how difficult it must have been to hear
I am sure someone else will have a far more useful response but please take care and be kind to yourself
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Thankyou dottie for your kind reply
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Oh @Lttlmystry I have missed you and now you have had another diagnosis and I reckon it is normal to feel in shock and scared and even some of the ‘why me’s’
You are one of our forum family so you have reached out to the right people, we are here for you.
I am presuming that you are awaiting an appointment so now is your opportunity to write down all your fears, questions and practicalities for that appointment.
The Blood Cancer Support Line is also there for you on 0808 2080 888.
Be ever so kind to yourself, my shock at diagnosis lasted a long time.
Please do look after yourself and let us know how you are feeling and getting on, sometimes it can be a difficult time of year
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Im slowly but surly coming to terms with this im gonna fight with all i have and not let this consume me i will give the support line a ring at some point im just giving my brain a little rest as all ive done is google then google some more x
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Oh @Lttlmystry you wore me out reading your post, I have to say that Google is not my best friend or companion, some information might be taken out of context.
It gave me a life expectancy of 5-10 yrs and that was 20 yrs ago.
Perhaps try and divert your mind and for me fresh air and appropriate exercise helps.
I will copy the Blood Cancer UK information on mind and emotions.
Blood cancer: mind and emotions | Blood Cancer UK
Some information might help.
Please do keep posting and be ever so kind to yourself and your Googling fingers.
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Dear @Lttlmystry,
I am so sorry to hear you’ve recently been diagnosed with myelofibrosis - I can only imagine what a huge shock that must have been for you and how difficult and overwhelming this time must be.
I know its easy for me to say but please try not to google too much and try to limit your google searches to reliable sources of information such as Blood Cancer UK and Myeloproliferative neoplasms (MPN) Voice. Be gentle on yourself and give yourself time to adjust to your diagnosis. I have enclosed our information on understanding myelofibrosis that you might find helpful Understanding Myelofibrosis
We are all here for you whenever you feel ready or want to talk on 08082080 888.
Talk care
Fiona ( support services nurse)
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Hi @Lttlmystry
Please don’t google too much. Easy for me to say I know.
I have eyes and recently had a bone biopsy to check my levels and to hopefully rule out anything else. Won’t get the results till next year now.
We’re all here for each other that’s for sure.
Speak to your consultant. Make notes and then contact them.
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Sorry to hear your diagnosis.
I was diagnosed with Myelofibrosis last year after 24 years of Polycthemia Vera. It took me quite a while to come to terms with it.
I am on a clinical trial and with the treatment feel 100% better than when I was diagnosed.
What risk category have they put you in and what treatment have they offered.
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Hello @Jonpd
Thank you for posting on this thread, good news to hear you are feeling better.
Do you mind me asking you a bit more about the trial you are on?
Do you know what the drugs are called?
Did your Consultant offer you the trial, or did you ask for it yourself? Sorry for being nosey, I am just interested to know more, as I recently (September) attended a myelofibrosis conference for nurses in London, and was excited to hear about some of the new drugs being developed. It was run and organised by Professor Claire Harrison, she is so passionate about MF and a true advocate for MF patients.
Take care, Heidi.
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Heidi
I am on the fedora trial which is a 2 year trial using a combination of fedratinib and ropeginterferon alga 2b so no new drugs.
My then consultant suggested I consider it. It has worked for me.
In reality it was my only option to get some treatment which I definitely needed.
I am in intermediate risk group 1 which under the NICE guidelines meant I could not receive any treatment. I still feel annoyed about it although it has worked out for me.
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