Having been recently diagnosed with an MPN but struggling to get a clear diagnosis of Polycythaemia vera (PV) and or CML is there a list of specialists for MPN. Might help to get a referral?
Thanks for sharing this with us all. I am sorry to hear about your recent diagnosis and do hope you are keeping okay?
May i ask Dougy, have you been assigned a haematology team at all or indeed have you been given the details of a nurse specialist overseeing your care?
We do not unfortunately hold a list of clinical professionals that we can recommend but
please do know if this is something that might be helpful to talk through with us-our helpline is open 7 days a week- Blood cancer information and support by phone and email | Blood Cancer UK.
We do hold information of both conditions on our webpages and as you are likely aware having an MPN ( such as Polycythaemia vera (PV)) or CML can be quite different in symptom & treatment management so it is best to return to your medical team and have your questions addressed again.
They should also be able to talk through with you the ultimate steps which may lead to definitive diagnosis and give reassurance around your specific diagnosis. They may also be able to talk through additional local specialist input and support you best moving forwards in accordance with your individual circumstances.
Again do not hesitate to reach out to our support team should it be helpful for you in anyway.
Best Wishes, Lauran
Thanks for getting back to me so quickly. I’m under the Haematology team at Weston Super Mare. They have run a battery of blood tests and bone marrow. Thos has left them saying Polycythaemia vera (PV) yes and CML? due to one of the white cell coynts being slightly elevated.
Going from my reading on here and MPN voice I beleived the Polycythaemia vera (PV) could cause the white cell count elevation.
I was given a number for a CNS so could contact them but didn’t want to be a pain. I’m going to have blood taken tomorrow so will check with the nurse then
Hi @DougyW. I think it’s really important to give your CNX a call. My experience with my CNS had always been positive. I am like you and don’t want to be a pain but decided I was going to call as waiting and not asking was worrying me more. Please do let us know how you get on
That is great to hear that you are under a heam team & a CNS team and please do know that you will never be a pain for asking some really understandable questions. The CNS team can often be a brilliant resource for answering your questions and also explaining things a bit more so please do reach out to them and request a call back in order to have your current questions answered.
May i ask have you received our Bone marrow transplant results back yet?
As you rightly have mentioned the cause of a raised White Cell count can be due to a number of factors and often, if raised, we would anticipate this to be re checked after a number of weeks in order to have a comparison. It is good to know you have this booked for tomorrow.
We really understand how many questions and uncertainties a new diagnosis can leave you with so do know at any stage- we are also here for you if you ever want to talk anything through.
Best Wishes, Lauran
Again thanks for getting back to me. I have not actually been provided with the results so will ask for them. I will also contact my CNS team with my questions.
Thanks for the advice.
Ive been diagnosed with Polycythaemia vera (PV) for exactly 2 years now and through asking my cns and haemo doctor have managed to get a referral to speak to a mpn specialist for a 2nd opinion.
I’ve noticed my platelet count and white cells count increase above the normal boundary but it’s no where near others with other blood cancers have reported.
Happy to discuss things further with you. Though I have zero knowledge on cml
Hi Rammie,how did you get to see a MPN specialist?
I spoke to my CNS first then I mentioned it to my Haemotologist during an appointment. I think they saw it as me asking for a second opinion but really I wanted another opinion and voice upon choosing next treatment and path for the future. My Haemotologist didn’t make it awkward or took it personally and my respect level for him went up massively because of it.
Though I was told to expect it to be months to hear back it was only a few weeks.
They didn’t have access to my medical records so it’s kind of like starting all over again with my first appointment being about my history and me rather than advice and advancements but to be honest I’m thankful it’s happening and the ball is rolling. If it’s one thing this diagnosis has taught me or improved… it’s definitely my patience
Thank you for sharing Rammie. I may take that approach myself if my Haematologist cant make a full diagnosis.
Hello there @Jaffacake,
You can ask for a second opinion at anytime: Getting a second opinion | Cancer information | Cancer Research UK and can be via your GP or Haematology team.
Our colleagues at MPN Voice https://www.mpnvoice.org.uk/ may be able to guide you towards specialists in you area if that helps?
Hope this helps and take care