Second opinion

[Georgehb]

Hi,I suffer from polycythaemia vera and have done so for the last 7 years. I am on hydroxycarbamide, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check. The consultant wants to give me a bone marrow biopsy and change my medication, but I would like a second opinion in relation to to what are best choices and what what type of medication would give me the least side effects and I know this depends on the individual.

So my main question is can anyone recommend and a really good consultant haematologist in the UK that I could go and see.

I live in East Yorkshire, but I am also willing to travel anywhere in the country.

Many thanks

[hunter5582]

Getting a second opinion from a MPN Speciaist would be a very good idea. Folks in the UK can speak from their own experience. Meanwhile here is a list.

mpnforum.com/list-hem./

[Georgehb in reply to hunter5582]

Thank you for your reply, I will have a look.

[Exeter21]

yes definitely get a second opinion . I am much happier now I have spoken to Professor Harrison at Guys hospital London. You can email your MPN representative for where you live or ask your own Dr to do so . Julia . Devon . UK 👌

[Georgehb in reply to Exeter21]

Hi Julia, thank you for your reply. By MPN representative, do you mean my consultant at the hospital? George

[Exeter21]

No the consultants at hospital are usually just Haemotology. Therefore they deal with a broad spectrum of blood diseases not always our MPN ones . An MPN Dr is usually based in a few areas in each Country Worldwide. Here in UK we have Professor Claire Harrison at Guys London.

There are others in Wales Scotland etc . There is a list of them on this MPN Voice Forum page we all belong to . Or look at Hunters comments as he put the link to that list up. He is very knowledgeable on the MPN details Julia . UK Devon 👍

[Exeter21]

hope that helps you understand . So the MPN ones are the experts on our disease 👍

[Georgehb in reply to Exeter21]

That's brilliant, thank you. George

[mhos61]

Hi George.

You can ask for a referral to an MPN Specialist either through your local haematologist or GP. They should support your request.

I agree with Julia’s comments on contacting Professor Claire Harrison at Guys and St Thomas, London, she is indeed a true international expert in the MPN field. Her secretary’s contact details can easily be found online by typing in her details. You could make contact with them for some guidance on the process.

I recently asked for a referral to Claire Harrison through my local haematologist. I am so happy that I made that decision. I now receive ‘shared care’ between my local haematologist and Guys. I opted for this arrangement due to logistics, as I live in Nottinghamshire, and it works well, so this may suit you too.

You have made a wise decision.

Good luck

[Georgehb in reply to mhos61]

Hi and thank you for your reply. That sounds great and I will definitely get in touch with her. I am not impressed with any of the haematologists at my local hospital.

Thank you again for your reply.

George

[ja66ck]

I have PV and currently have been experiencing the same issues with my platelets increasing, which affects my driving. My Hematologist increased my daily dosage of Hydroxyurea from 1000 mg to 1500 mg. He also recommended that I see a MPN Specialist and assisted me in getting an appointment. I had been pursuing an appointment with this same specialist for the past few months, every since the MPN Specialist I had been seeing had moved on. I look forward to meeting with the new Specialist and being provided with the best solutions. The ideal of taking 1500 mg of hydroxyurea daily is not sitting well with me and I'm very concerned about potential side affects. Good luck to you!

[Georgehb in reply to ja66ck]

Hi,

Thank you for your reply.

My dose has gone up from 500mg a day to 1500mg for 3 days and 2000mg for 4 days and that's why I am wanting a second opinion. My hematologists seem to hand them out like sweets not thinking about the consequences to our bodies.

Good luck to you too. George