Recently Diagnosed - MPN

Recent diagnosis
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Hi

I’ve been recently diagnosed. Had my first haematology appointment a few weeks ago and was told that i have Myeloproliferative neoplasms (MPN). All i was told was that they’ll keep me on Aspirin and in the future will need a bone marrow biopsy to determine what type. They’ve been taking regular blood tests monthly since i was diagnosed with Rhumatoid Arthritis in 2021 and have found my platelets above normal at around 600 since.

But back in 2021 i got CV-19 after i recovered i has my routine bloods taken and they found i had no white blood cells so ended up in hospital for a week.

Was wondering if this has any connection with my recent diagnosis.

All i was given at my haematology appointment was the blood cancer booklet to read up on and was told to see him again in July.

So feel very stressed and anxious about it. As feel I’ve been left to find out alone. As family don’t really discuss it with me.

Please can anyone help

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Rabel I have no medical knowledge so I cannot comment on any possible connections. I can understand your stress and anxiety. I had to wait three months after my first visit to the haematology department to recieve my diagnosis of polycythemia vera. I have found this forum to be very supportive and informative. Maybe if you mention which booklet you were given someone on this forum will have advice for you. Thinking of you and sending you good wishes.

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Hi @RABEL Welcome, I am so glad that you have joined our forum
I will send you the link to the Blood Cancer UK information on Myeloproliferative neoplasms (MPN)’s
What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
And also to an Myeloproliferative neoplasms (MPN) support group
MPN Voice – mpnvoice.org.uk
I found when I was first diagnosed that nobody knew how to be and in hindsight I realised none of us had a manual.
I could not explain what I really did not understand myself
You are not alone now you are part of our forum family.
Were you given a nurse contact as they are usually a good contact for questions.
Perhaps now is a good time to write down your fears, questions and practicalities.
It is very natural that you feel stressed, isolated and anxious, I know that I did, just be kind to yourself and keep posting on here, we are here for you.

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Hello there @RABEL, welcome to the forum! I hope you find it as helpful as I do.

I’m so sorry to read of your Myeloproliferative neoplasms (MPN) diagnosis and stress about it. It’s really anxiety-provoking, isn’t it?! It would be more surprising if you felt totally fine. You are not alone in feeling this, but try not to let it escalate as stress can make us feel much worse physically as well as mentally.

When I was diagnosed with an Myeloproliferative neoplasms (MPN) last year something that really helped was knowing which type it is. As you probably already know, there’s a few different types of MPNs that are all related. There are similarities in symptoms, treatments, and side effects, but those of us diagnosed with MPNs will react differently as they affect our blood cells in ways unique to each of us. That might be why your white blood cells were so low.

I’d say it would be really helpful to know which Myeloproliferative neoplasms (MPN) you have been diagnosed with so you know exactly what you’re living with. I’ve got Polycythaemia vera (PV) but there’s also Essential thrombocythemia (ET) and, rarely, these can transform into other MPNs like myelofibrosis which can have more complications.

Waiting till July with only a partial diagnosis is too long, I reckon. Don’t be shy about asking for more clarity. It is your health, after all, and you’ve just been told you have blood cancer. It’s a big deal! More information from your haematologist could help reduce your anxiety.

The links to MPNs that @Erica shared are really helpful. If you can find out from your doctors which type of Myeloproliferative neoplasms (MPN) you’ve been diagnosed with then you’ll be able to check the finer details of your specific blood cancer.

Regardless, you’re now part of the family and you’ll find plenty of folks here who know what you’re living with and what you might be experiencing,

Let us know what your doctors say and we can support you with your diagnosis and all the feelings that come up for you.

In this early stage after diagnosis it’s especially helpful to keep note of what’s going on for you, symptoms you notice, reactions to treatments. These can be helpful for attentive haematologists to see how you’re getting on.

Keep us posted, @RABEL!

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Hi @RABEL

I can see you have some great support from Duncan & Erica, and I just wanted to say welcome to the forum.

You’ve definitely found the right place to share your thoughts and get support from others with MPNs.

I do agree, being asked to wait until July sounds very unfair. I recall my appointments coming through quite quickly, on my diagnosis of Polycythaemia vera (PV), along with my BMB. I felt quite anxious about the BMB but, it was nothing like I’d imagined. A little uncomfortable but once completed, I had no after-effects. I recall going out for cake, straight after, which I certainly recommend.

Please keep us all posted on your journey, and I sincerely hope you get to move forward your appointment :crossed_fingers::crossed_fingers:

Lx

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