MPN Specialists in Uk

[16Gardinia]

Hello My name is Jackie

In April of this year I was diagnosed with Intermediate Stage 2 MF. This followed 10 years receiving treatment for ET. My haematologist said he hadn't expected to see this development for another 5+ years. As my father died 3 days after his diagnosis of Acute Myeloid Leukaemia I am feeling concerned about the rapid changes I am experiencing. I have known my haematologist for over 14 years as he was also my husband's consultant for his Mantel Cell Lymphoma. However I believe I now need to be more informed about MF and the treatment options/prognosis. I would like to request a referral to an MPN specialist. I live in the West Midlands. Advise please on who to refer to. Many thanks.

[Tico]

Where in the west Midlands do you come from?

[16Gardinia in reply to Tico]

Worcestershire

[Tico in reply to 16Gardinia]

I used to attend the Queen Elizabeth hospital in Birmingham after transferring there when i was unhappy with the care at my local hospital unit haemotology clinic. My standard of care was a lot better but after nearly 3 years with my health slowly declining i had to tranfer back to my local hospital haemotology unit, (care worse than ever) but i did speak to a lot of patients at the Q/E who held a particular doctor in high regard. His name is Professor Charlie Craddock CBE, i think he is the director of haemotology and oncology there and as well as training in London he also trained in Seattle, Washington in USA. I heard patients say he was Birminghams equivalent to Claire Harrison at Guy's hospital. You could always ask for a referral there as is your right, if its within distance. I still wish i was over there regardless such is the complete and utter shambles back where i started from all those years ago.🥲. I wish you good luck, i know if you get Professor Craddock you will be in good hands. 🤞 Tico.

[Spanelmad]

Contact Maz through MPN voice she will give you a list of UK specialists

[16Gardinia in reply to Spanelmad]

Thank you I will

[william-Indo]

Hi Gardinia,

You may check to Hunter5586 posts to view all option of MPN specialist in your area.

Good luck

[Nickthedevil]

Hi Jackie I can highly recommend Dr Joanne Ewing. I see her at Solihull Hospital but she also has a clinic at Heartlands hospital. I transferred to her after a recommendation from Maz about 5 years ago when I was getting terrible treatment at my local hospital. I hope you find someone soon.

Karen

[Sivasi]

HiI too have recently been diagnosed with MF intermediate risk after having treatment for ET for 9 years, (first Hydroxycarbamide then Pegasys). My consultant stopped Pegasys and put me on Jakavi, 20mg twice daily, plus aspirin. Before this I was feeling unwell - anaemia, very tired, no energy, muscle aches, but on this medication my platelets are down to 400 and I feel really well. I'm hoping I'll be able to reduce the Jakavi dose when things settle down. I've also asked for a second opinion from Claire Harrison. Not sure when that will come through. As far as I know Jakavi is the best choice for MF treatment but I'm no expert. MPN has an information leaflet on Jakavi which I found very helpful.

[16Gardinia in reply to Sivasi]

Hi thank you for sharing your experience. Much appreciated.

[Scaredy_cat]

What age are you? Has the haematologist raised the possibility of a stem cell transplant?

[16Gardinia in reply to Scaredy_cat]

I’m 65. No mention of stem cell transplant.

[hunter5582]

You are wise to consult with a MPN Specialist. This is a list of patient-recommended MPN expert doctors, mpnforum.com/tsr-the-list/

[16Gardinia in reply to hunter5582]

Thank you