New consultant

[Skye333]

Hi I have Myelofibrosis, can anyone recommend a good consultant between Halifax and London. I'd like to see Prof Harrison but it's quite a long way to travel. It would possibly be just for a second opinion but if they are close enough I could change.

Thank you

Janet

[AndyT]

Hi Janet,

Professor John Reilly at the Royal Hallamshire in Sheffield may be your closest MPN specialist if you're in Yorkshire - I have ET and attended his clinic several times a few years ago. I'm now seeing Dr Qureshi and his team at Leicester Royal Infirmary and am very impressed by them too.

Hope you find the second opinion you are looking for...

Andy

[Skye333 in reply to AndyT]

Thank you Andy I will certainly consider Prof Reilly

Janet

[crapaud]

Hello Janet,

I don't know any of the consultants mentioned - I don't even live in the UK - however the advice I can give is get the best second opinion possible.

I personally was diagnosed with MF/MDS-U a few years ago and after being advised to go for a SCT I sought a second opinion from the number 1 in France (who confirmed that a SCT was the best solution for me).

Incidentally, I got a third opinion in between the original and recommended second option that contradicted what the other 2 had said, and that really threw me off!! So my advice would also be not to get too many opinions or it may muddle you up.

Take care

Crapaud

[Skye333 in reply to crapaud]

Hi Crapaud I'm not too familiar with all the terms. Could you tell me what MDS-U and SCT means please.

I think you are right that if I get a second opinion it should be from the best.

Janet

[crapaud in reply to Skye333]

SCT: Stem Cell Transplant (similar to Bone marrow transplant)

MDS-U: MyeloDisplasic Syndrom - Unclassified. Another form of bone marrow/blood disorder.

I had most of the PMF (primary myelofibrosis) symtoms without Jak2, without enlarged spleen and without CALCR but with a few other 'treats' thrown in (all written in French so I have difficulty explaining !).

Consequently in view of an 'uncertain future' due to this uncommon mix I was strongly advised to have the transplant.

As they say over here - bon courage.

Gary

[crapaud]

Please let me add and reassure you that MF does not necessarily mean a SCT/BMT is on the cards - the majority of people have treatments for years. Take a look at the infos on this site and you'll see that there are numerous treatments depending on individual needs - and there are new ones coming out all the time.

Mine were pretty exceptional circumstances - diagnosis to SCT in 13 months.

Gary

[Skye333 in reply to crapaud]

Ok Gary thanks for the explanation it sounds very complicated. I hope you are doing ok now. I think I will look into seeing Prof Harrison in London.

Janet