Mpn

Stuart2412

Hi I am new my name is Stuart I recently got out of hospital after being in for 7 weeks I have fnd which makes my legs shake and now have a wheelchair while in hospital been diagnosed with mpn thrombocytosis which is a blood cancer there is no cure

Santosha12

https://forum.scope.org.uk/discussion/134126/mpn

Hi @Stuart2412 and welcome. I'm sorry to hear of your diagnosis. How are you feeling now you're out of hospital (seven weeks is a long time isnt it?).

Do you remain under the care of a haematologist and have a plan for keeping as well as possible with drug therapies? My mum had MDS (myeloid dysplastic syndrome), a different form of blood cancer.

Have you heard of MPNVoices.org.uk ? They are a charity in the UK and hold forums (in-person and online) but I don't think it's a forum such as this one but might be of additional interest and support for you.

I hope you have support at home and that you find it here with Scope - I'm sure you will.

Depending how you are affected/what support you need, have you considered applying for PIP (personal independence payment)? That could be a big help to you and might be worth considering.

Take good care and my very warmest wishes to you 🙏.

Stuart2412

Hi yes I am on the mpn site and get lots of advise about it unfortunately I'm with mayday haemotolgy and at the moment they have only put me on aspirin to stop my platelets getting higher but I keep telling them I am having bad pain in hands feet and knees it's like my bones are crushing it's been like this for 6 months now I am having a bone marrow biopsy on Friday to see which type mpn I have and maybe I might get some help then on top off all this when my feet touch the ground after 10 mins they turn blue

Santosha12

That's awful @Stuart2412 I'm so sorry for the pain you're suffering from 🫂. I'm glad your biopsy is now 'only' 5 days away; each day must be very difficult though in the meantime. It's almost impossible to imagine that pain for us that don't have it; I can truly empathise though, especially after caring for my mum.

I'd imagine they'll be able to properly target your therapy after your biopsy which I'd expect will give you relief, but also keep you as stable as possible and prevent complications or deterioration.

I'm guessing you know that Scope have a helpline you can call to chat things through if you need to.

Also, Macmillan Cancer Support were an amazing source of help to us and also have specialist benefits advisors too, if needed . They're on 0808 808 0000 seven days a week 0800 to 2000hrs for the helpline and the benefits/money advice is Monday to Friday 0800 to 1800hrs (same 'phone number).

Wishing you the very best for Friday and thinking of you 🙏.

Stuart2412

Thankyou for that I am happy I have the bone marrow biopsy but am worried about the result as you no there's different types of mpn and the way my bones are hurting I'm worried it could be lykemyo my fingers are crossed

Santosha12

You're very welcome @Stuart2412. I completely understand your worry. I will be keeping everything crossed for you and praying it is not the type you are fearing. I'll be thinking of you and very strongly hoping for the best outcome for you with your results 🙏.

Holly_Scope

Welcome to the community @Stuart2412 and thank you for sharing. I hope the forum can somewhat act as a distraction for you when things are tough. There are lots of lovely people here and lots to do. I wish you all the best with your results. 🙂