Myelofibrosis

i am currently on watch and wait,only symptoms are fatigue and slightly enlaged spleen,i am on watch and wait,but unsure if i should be on some treatment. Thanks.

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Hi @glynis great to hear from you again.
Perhaps this is a question for either your specialist nurse, consultant or GP who know your whole medical history.
This is a very personal response.
I have another blood cancer but I feel a very lucky girl to still be on watch and wait (active monitoring) for 20 yrs.
Please do let us know what they say.
Take lots of care of yourself

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ok thank you,you take care also.

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Hello @glynis, sounds like you’ve been diagnosed with myelofibrosis (MF), which I’m sorry to read. I was diagnosed last year with a related Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV), so I’ve read up a bit about MF as my blood cancer can transform into that.

Although our MPNs are rare in themselves, MF is rarer still as I’m sure you know from your readings. Have you looked through the Blood Cancer UK information about MF? It’s really helpful, and all based on clinical research:

Although the fatigue with these MPNs is often no joke and can even be disabling, being on watch and wait AKA active monitoring would be my ideal. Weirdly enough, active monitoring is considered treatment in that you likely don’t need any other invasive type of intervention yet while your blood cell numbers and bone marrow are observed over time.

I’d be tempted to ask your haematologist about your care plan and what to expect going forwards in terms of what other treatments you might expect. But I think you’re wise to avoid googling MF as there’s a lot of inaccurate prognosis information out there! Maybe stick to blood cancer organisations. LLS have some great information as well, although it’s an American blood cancer organisation so spellings are different (although treatments seem to be pretty much the same).

Should you be interested, I attended a blood cancer conference earlier this year and there was a Myeloproliferative neoplasms (MPN) specialist with lots of experience who shared loads of interesting facts about our MPNs. Here are my notes from the conference.

Let us know how it goes with your appointments and fact-finding. I hope you continue to stay on watch and wait!

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Oh and another thing that might feel reassuring is searching this forum for others living with MF. There are many folks here who initially had Essential thrombocythemia (ET) or Polycythaemia vera (PV) which transformed into MF. Have a look and see if other survivors of MF have wisdom to share, I’m sure you’ll find lots.

Take care, @glynis. Let us know how you get on!

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Oh thank you very much for all the info and advice ,i will read your notes, i have an appointment shortly with my consultant and i will ask him about my concerns ,thank you again ,much appreciated.

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ok thank you ,take care also.

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You are most welcome, @glynis. I hope you find some helpful information. Do please let us know how your consultant appointment goes.

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Thank you ,i will do.

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Hi everyone i had polycythaemia vera,i was diagnosed 7 years ago,now I’ve now developed Myelofibrosis and have been on a trial for 12 mths, my bloods are all back to normal even though my platelets were at 2000 now 375 I’ve got another 12 mths then the trial ends i take 4x100mg fedratinib daily and 250mgs of interferon twice a month.lets hope the nice pass tgis combination.

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Hi @pele58 a great big welcome to our forum. I am glad to hear that you have a longer term treatment plan.
I look forward to hearing more about you so please do keep posting.
Look after yourself

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Is that the Fedora trial? I’m on the same medication and just over 6 months in. My consultant say a I’m doing very well.

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Yes the Fedora trial at the zchristie

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I also had Polycthemia for 24 years prior to developing Myelofibrosis.

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