Hello everyone, I’m a 48 year old male that’s been diagnosed with Myelofibrosis, Jak2 Mutation. I’m terrified and scared.
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Hello there @closcott, a great big welcome to the forum, I’m glad you found us. Hopefully it’ll be as helpful here for you as it has been for me.
I’m so sorry to read of your diagnosis with myelofibrosis. While I also have the JAK2 gene mutation, it’s the overall diagnosis of blood cancer that still terrifies me most. In my case, I have Polycythaemia vera (PV) which can transform into myelofibrosis so I have an idea of what you might be experiencing now. You’re not alone, many of us here have MPNs like yours, and I’m sure you’ll find support.
One thing that helps when I’m feeling overwhelmed by my diagnosis and dreading how it can affect me is that, like you, I am considered a young survivor. We have many years ahead of us where science can catch up and find ways to undo the gene mutations that can trigger our blood disorders. There’s no remission for us yet, but plenty of treatments that can hold these disorders at bay.
As it is, for now I imagine you’ve been told not to google myelofibrosis and I’d say try not to as there’s so much out-of-date information online. Instead, perhaps this Blood Cancer UK information might be useful for now: Myelofibrosis (MF) | Blood Cancer UK
Here’s more information about our family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Do keep us posted about how you’re getting on. Please remember that you can always bring your concerns and questions here and no doubt someone will understand what you’re going through.
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Hi @closcott welcome to our forum and I think that it takes courage to post…
I am not surprised you are terrified and scared
I bet having your diagnosis wasn’t in your life plan
For me I found the medical language was really so scary.
Have you got any support?
I found this forum was a place where I could be really honest about my thoughts and feelings.
I have just read @Duncan post which is brilliant and I cannot better it.
I would say just be very kind to yourself and this time will give your you an opportunity to write down all your fears and questions for your next appointment.
Please do keep posting as I look forward to hearing more about you.
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Thanks so much for the encouragement!
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Thanks so much for the feedback and encouragement !
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You’re more than welcome, @closcott. Looking forward to hearing more about how you get on when you feel up to it.
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