finding a specialist

[Lemonverbena]

hi everyone, am pv/ jak2 positive (2007)(et from 2001) and on hu for years (2011)and recently struggling with anaemia type symptoms , but haemoglobin ok. mch & mcv low ferritin 8. a few broken bones and lots of fatigue/ clumsiness. and a recent mmelonoma.

have struggled getting haematologists to address any of this or explain. gp unclear re any action. have been proactive with my concerns, but either dont know or brushed aside.

my question is at what point is it worth seeking out a mpn specialist? how do i get a referral? how does this affect current relations with local haemt?

many thanks

[Mazcd Partner MPNVoice]

Hi Lemonverbena, it is a shame that you are having these issues, it can make a huge difference if you can be seen by someone who has more empathy with you and is able to answer your questions and address your concerns. You can ask your GP to refer you to see another consultant in another hospital and just say that you want a second opinion, this should not cause any problems at all with your current haematologist/hospital. Best wishes, Maz

[UKZA in reply to Mazcd]

Hi Maxz , I too have a similar problem and empathise with Lemonverbena. I am concerned that my treatment is text book, rather than knowledge of mpn. I am sure my haem is an expert, but just not in mpn, so this is not a complaint. I would love for peace of mind to be referred to a specialist. If I go to my gp, would they be able to recommend someone in the north east? I am willing to travel. Many thanks. Penny

[Mazcd Partner MPNVoice in reply to UKZA]

Hi Penny, you can ask your GP or you can research this yourself, by looking at the hospitals in your area and seeing what special interests the haematologists have at each hospital, they generally do list their special interests. But it is also worth speaking with your current haematologist to address any concerns you might have in terms of what information you are being given about your MPN and ongoing treatment of it, sometimes just telling your consultant what you want to know does help, some people don't want to be told anything and are happy to just have their blood test and get their prescription, whereas others want to know much more, so you need to tell your consultant. Best wishes, Maz

[hunter5582 in reply to UKZA]

Here is where I found a terrific MPN-expert doc mpnforum.com/list-hem./ .

I have to travel too - but it is worth it.

[Cja1956 in reply to hunter5582]

Yes, I found mine also on that website. She is the best!

[Lemonverbena in reply to Mazcd]

many thanks

[hunter5582]

I would say you definitely need to seek consultation with a MPN specialist. Here is a list of patient-recommended MPN expert docs mpnforum.com/list-hem./ .

Many hematologists have little or no experience dealing with MPNs. If your current hematologist has a problem with you seeking an expert opinion, I would fire that doc. Your health is more important than his/her ego. It sounds like you are having a combination of side effects from the HU and PV related symptoms too.

You did not mention whether venesection (phlebotomy) is a part of your treatment, but it commonly results in iron deficiency. That is essentially its purpose - how it controls the red blood cell levels and keeps HCT<45%.

All the best

[Lemonverbena in reply to hunter5582]

thanks hunter, yes do have venesection but not that often these days as it began to fire up the platelets / doesnt help anaemia. have upped dose of hu instead. ironically felt good after a venesection!

many thanks for your clear thinking, thats helpful.

[Lemonverbena in reply to hunter5582]

just looked up my haem . she is listed as having a special interest in mpn's. not clear what ghat means though

[hunter5582 in reply to Lemonverbena]

Is your doc on the MPN Forum list or is her MPN specialty listed elsewhere?

I am doing well on a phlebotomy-only regimen. I am HU intolerant - so can't take that stuff. Despite being JAK2+PV Age >60 -, this approach seems to be working. Had to lay off the phlebotomy for a while since my iron level got too low. Since erythrocytes are likewise low, it is working out OK (except for the low energy levels).

Hope you get your own situation squared away ASAP.