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Myeloproliferative neoplasms

The hospital had no leaflets, so most of my information is internet based , and therefore vast and also useless. Any tips on how to get straight talking information.
Won’t see the Doctor for another 4 weeks , and in truth you almost have to know the answer before you can ask the questions
Thanks for reading this .

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Hi @PDH and welcome to the forum. I hope we will be able to support you and that others can share their experiences with you.
It must be really frustrating to receive a diagnosis but not be given any information whatsoever. When I was diagnosed with lymphoma I wanted to find out as much as I could. Was the diagnosis a shock to you or have you been having things investigated?
I was wondering if you were given the number of a specialist nurse or if your hospital has a cancer support centre? Apologies if I am talking about things you have already tried. I’m just trying to think of everything I accessed when I was diagnosed.
If you haven’t done so already here is the information that Blood Cancer Uk provide on their website: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
It may also be worth typing the diagnosis into the search bar on the forum and you will see any other discussions that have taken place.
Before your next appointment I would suggest writing down all of your questions and take a notepad with you to write down the answers. If possible take somebody with you as well and give the support line a call if you can - they will be able to offer lots of advice and support.
I’m the meantime please take care of yourself. The waiting is extremely difficult and 4 weeks will seem like forever when all you want is answers! How are you doing in yourself?
I look forward to finding out more about you so we can continue to support you. :blush:

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Hi @PDH a great big welcome and I am glad you have found this reputable site amongst the useless information out there.
The Blood Cancer UK website does have information on Myeloproliferative Neoplasms
The Blood Cancer support line is also above if you would like to speak to someone.
What I can perhaps remember is how I felt at diagnosis, the fear, the shock, the isolation. I remember coming away from the hospital and I felt in a bubble with the world going on around me.
How could I explain to others what I did not understand myself.
Then the wait for my next appointment seemed forever, I am afraid you have entered the world of waiting and another language.
You are probably in shock so be very kind to yourself.
Do you have any support around you?
Anyway now you have this forum family here for you.
I understand you feeling that you sort of have to know the answers before you know the questions to ask (so well put) but perhaps just very open questions like what comes next, what can I expect, will I be able to continue working, what is the prognosis etc are a starting point.
Please do ask us any questions you want to and as I said we are here for you. Look after yourself.

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Hi @PDH a warm welcome to our online community, I’m glad you’ve found us. I’m so sorry you’re going through this. As Nicola has said, the support line is here for you if you want to talk things through with us. We also have an MPN booklet here (feel free to order a copy that will be posted to you). Another thing that might be useful is our Just Diagnosed webpages. How have you been doing?

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Hi @PDH
I know nothing about your condition but what saddens me is that you have been given this diagnosis and just left to fend for yourself

When I was told about Myeloma my consultant didn’t use the word cancer and armed me with a fantastic booklet from Myeloma UK that explained everything I needed to know.
How different the approaches are around the UK

I would write down all the questions you have and maybe email your Doctor for more information or booklets/leaflets ready for your next appointment or sooner via post/email

It’s a lot to take in just having a diagnosis to start with.
Some questions
What happens now
What treatment will I have
How did this happen
Do I get a specialist nurse
Is there a helpline
How will I feel

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Hello PDH I am glad you found us here on BCUK as yes info is what you need when waiting for or receiving a diagnosis, sorry to hear your hospital had nothing to give you to take away and go through. Anyway I have a MPN mine is ET diagnosed 15 years ago. It’s a very treatable set of conditions but you need information and support, as its a rare set of blood cancers and you wont just meet or come across someone else with it to swop notes !! Do look out the charity website MPN Voice who are excellent, they run a forum also on Health Unlocked, they also run in person forums in different parts of the country (which at the moment are being done online via Zoom) which are excellent and they also have various printed booklets available on their website, many of the charity workers have a MPN themselves so much understanding and empathy. Do keep posting on this lovely forum, BCUK are wonderful and we are all here to give support! All the best

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Hi @PDH I can’t add to what the others have said except to say welcome. There is some good information if you go to an official source and Blood Cancer UK re excellent at dispensing up to date information. I had the same problem when I was first diagnosed and had to find my own way as there was no one to point me in the right direction, Hope things get better for you.

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No it’s all news to me Nicola . Not shocked, not worried, just carrying on as usual. I’ll push the a little harder on my next visit . Thank you for your comments :clinking_glasses:

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Thank you Jilly I’ll look those up Thanks again .
Paul .

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I think @PDH you might find that many of us have had to learn to push harder and be very pleasantly assertive.

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Hiya and welcome. If you are looking for detailed info specifically for MPNs, I have ET and am on a Hydroxycarbamide (HU), you should google MPNVoice website. It is specifically for us. Lots of leaflets you can down load and info about the different MPNs, their treatment options, details about the various meds. Also they have a buddy system you can register for so you can chat with someone in the same situation.

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Thank you for your kindness.

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Cheers Franco . Thanks for your input.

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Thank you so much for your help :wine_glass:

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Thank goodness for people like yourself.
No , not in shock , not in denial, or any of the all too real emotions even my wife doesn’t know, because I know so little about the condition myself and would not be able to answer any of the questions I would get, and as you know the internet is a minefield of misinformation .

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