Et diagnosed.

[10061950]

Does anybody know of a mpn expert in the Manchester areas. I mseeing my nurse monthly where she takes bloods and rings me with my results. I am now on 17 Hydroxycarbomide tablets a week which I think is too much i started on 7 a week my level then was1000 that was in July this year, the last 2 months I have been on 17 tablets a week my latest platelets count is now 315. That is why I cannot understand why I am on such a high dosage.

[hunter5582]

Most hematologists not have the KSAs to provide optimal MPN care. Many are not up-to-date on the current research and thinking about treating ET and the other MPNs. Here is a list of MPN-expert docs. Suggest contacting one ASAP about your questions. mpnforum.com/list-hem./

Here are a few references you may find useful.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

silvermpncenter.weill.corne...

Hope you find answers to your questions ASAP.

[Peachjoy in reply to hunter5582]

Hi Hunter.You also recommended the MPN list of specialists to me.

I’m wondering how I could access the Professor in Manchester, England. I don’t think that the uk cancer doctors have private practices. No idea how I would get seen.

I also tried to make contact with the doctor listed in Barcelona, but he has retired.

I really need to make some progress but feel as if my world is shutting down on me.

[hunter5582 in reply to Peachjoy]

There are docs with private practices in the UK. The MPNers in the UK can advise who is available for private pay.

Reminder that there is no "must" start on hydroxyurea. It is a recommendation. It is also not the only option if you do decide to start cytoreduction. PEGylated Interferon is the other recognized first-line treatment option. There are other options as well,

[ladydriva]

hello, I travel from cumbria to manchester to The Christie to see Prof Tim Somervaille… he is an expert in Mpn,s.. and is very knowledgeable, respectful and listens to you as a patient. I would highly recommend.

[PeterET]

I travel to see Prof Somervaille at Christie's in Manchester once a year, then use my local haemo dept for routine blood tests. Ask your GP to refer you. I've been on 17/18 Hydroxy a week since I was diagnosed 17 years ago (I'm now 72) and don't have any real issues with this quantity. My plts fluctuate between 350 and 550 but Prof Somervaille isn't too concerned with 17 hydroxy/week long term. Hope you get to see him, good luck!Peter

[Peachjoy in reply to PeterET]

Hi Peter,I’ve had ET for 16 years, now at 62 my haematologist says (by telephone) that I must start Hydroxycarbamide. I’m terrified of jumping in, or of making the wrong decision.

My platelets hover in the 630 to 750 bracket.

Having read a lot now I really want to see a MPN specialist.

Prof Somervaille in Manchester would be ideal for me, but I’m unsure of how this would work in conjunction with my usual haematologist.

I really need to get a plan working, as at the moment I can barely think straight.

Thank you

Peachjoy

[Wyebird]

Don’t worry 17 isn’t really a high dose, I was at one time on 17 plus 9 anagrelide. However in my untrained opinion with you platelets that low maybe there is room to decrease a little. Maybe discuss with your nurse. To have bloods taken so often tells me you are being closely monitored which I think is quite encouraging .

Regarding an MPN specialist, I attended an MPN forum in Manchester so I am aware that there are a few specialists available. Max hopefully can help you there.

Good luck

[Quercus53]

Hi, hope you had a good Christmas despite your ET. I have been under pressure to jump onto the meds bandwagon and finally decided that my haemo doctor hadn't really got much of an idea about ET. My platelets are much the same as yours and I decided to get hold of all my blood tests for the last 10 years - I have an amazing doctor's surgery.

I plotted the whole 10 years on a graph and, apart from a couple of spikes due to flu vaccine and contracting RA, my platelets have remained pretty steady. It really confirmed what I was feeling, that I wasn't getting much worse.

Enter Mr Google!! I went on Google and searched for MPN specialists in my area - in the south west UK and I settled on a specialist in London. I phoned his secretary and was instantly given a choice of appointment dates in January, I have forwarded my graphs so he knows how long I have been undiagnosed as well.

Hopefully he will confirm that I don't need to go on medication yet. This is £225 well spent!

Hope you get to see someone asap, if you know who you want to see then contact his secretary and make an appointment, I didn't have to be referred by my GP,

I am expecting my haemo doctor to be a bit sniffy but when all's said and done, it is our bodies and our decision.

Good luck xx

[hunter5582 in reply to Quercus53]

That is a very good plan and your right to pursue. If your hemo-doc has a nose put of joint, suggest firing that doc. Your health is or important than the doc's ego. I would note tha I have two hematologists - a MPN Specialist who consults/advises and a local hematologist who handles the on-going care. This arrangement works great.

[D1enny]

HiI see Dr Rachel Brown who is a specialist in MPN/ET.

She is based at Manchester University Foundation Trust(MFT)

She has done the ET talks at the local forums.

She is brilliant. Takes time to explain things thoroughly and listens to you.

Hope this helps

[mhos61]

Professor Somervaille at the Christie in Manchester is a leading MPN Specialist. You could ask your haematologist or GP to refer you.

I think it’s quite reasonable for you to question your present hydrea dosage. Could you contact your CNS to discuss your concerns?

I remember that my hydrea was reduced when my platelets reached 288, as my CNS didn’t want them to continue dropping at the rate they were, especially with three months between appointments.