Hi everyone, I’m new to the group. I suffer from trombocitis and am having a bone marrow aspiration on Tuesday. Because of high platelets enlarged spleen, and anaemia, it is presumed to be Myelofibros. Still don’t know if it’s primary, secondary or multiple. I appreciate any first-hand information.
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Hi there i have Myelofibrosis and im on a drug called fedratinib. I have been on it.for nearly 2 years and feel quite well most days …its gets some getting use to but im sure your consultant will give you the best treatment please let me know how you get on
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Hi @CarolCull,
I hope you’re doing okay? I’m sorry to hear that you are going through a worrying time. We appreciate how difficult the wait for tests and results can be and the level of uncertainty the situation will bring.
Should you need to talk things through at any point, do know that our helpline is very much here for you- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care, Lauran
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Hello @CarolCull, glad you found the forum. I hope you’ll find it as welcoming and supportive as I do.
Just wanted to say that I hope your bone marrow biopsy goes well, do let us know. Perhaps you’ve been prepared well for the procedure but after mine I’m glad I had someone with me to get me home as I was a little unsteady from the anaesthetic.
I’m keeping my fingers crossed that you don’t get diagnosed with blood cancer as it sounds like you’re awaiting confirmation. Perhaps ask for further information at your BMB appointment? And make sure to take questions with you as you’ll have experts right there to ask.
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Hi @CarolCull a great big welcome to our forum.
You have had great responses from @Suzyq, @LauranBloodCancerUK and @Duncan
I also believe it is worth telling my medical team if I am feeling anxious about a procedure or would like pain relief and I have found them very helpful.
Perhaps the more relaxed you can be the better.
Please do let us know how you get on and be kind to yourself.
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Thank God for medical research
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Thank you, I’ll let you know, not sure how long the results will take. Waiting is awful.
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Is there a check list for questions?
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Thanks for the messages. What a wonderful group. I’ll keep you posted
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Oh you’re welcome, @CarolCull. It really is great here.
Any and all questions you have about myelofibrosis would help I reckon, like how it’s diagnosed, what blood cell issues to look out for in future blood tests, what to expect your treatment might be… These specialists will be able to answer what comes to mind. Another reason to go with someone else as they can help keep notes of the answers to your queries.
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Morning @CarolCull,
All the best for today- you’ll be well looked after I’m sure, but do let us know how today went. Results for bone marrow can take a couple of weeks, sometimes a little longer unfortunately. We understand this wait can feel really difficult, so do surround yourself with support and reach out to us should you need to talk things through- 0808 2080 888.
Take care, Lauran
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Hi Lauren, the biopsy went well, and I have to wait till the 5th of February to get results. I am more confused than scared. My haemotologist said I had mylofibrosis, having suffered from trombocitopenia for years, so what exactly am I waiting for? Do I have a diagnosis or not?
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Sorry, I meant trombocitis, which has lead to anaemia
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Hi @CarolCull I am glad the biopsy went well.
I will copy your post to @LauranBloodCancerUK .
I am not surprised you are confused and the waiting for the 5th Feb is going to be so hard for you, but hopefully you will get some answers, otherwise I expect you will have some questions ready.
Please do let us know how you get on and be ever so kind to yourself in between.
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Hi there, can you believe I still have no news? I’m a bit annoyed as my knees are very very sore and my anaemia or high platelets are not being treated. Anyone else have sore knees?
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Oh goodness that’s a long wait, @CarolCull! 5 February was weeks ago, I’d be tempted to politely shame your doctor into sharing more information about your diagnosis. Maybe point out you’re dealing with uncomfortable symptoms like the sore knees and would like to know how to manage that in a more timely manner.
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Hi @CarolCull @Duncan has given you a great response.
Perhaps be pleasantly assertive and do let us know how you get on
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