Only Just Diagnosed

[Old_Coger]

Hi,

I have just received a diagnosis of MPN COLR positive.

My haematologist has not put any further diagnosis e.g. ET, MF or PV

My assumption is it is most likely ET due to elevated platelet counts, though I have read that with MF you can also at the very early stage get elevated blood counts before they drop off.

Also there is no indication if its TYPE 1 (like), TYPE 2 (like) or indeterminate.

My question is this diagnosis came from a blood test , do the blood test provide all of the above information or will I need a bone marrow biopsy to get a definitive and accurate diagnose ( I can't find anything that tells me this on line).

I won't be seeing my haematologist until June and want to armed with all the right questions and also know what to expect.

Thanks for your help

[hunter5582]

Hello and welcome. It is a big shock to find out that you have a MPN, which is a type of "blood cancer. " It is important to know that for many of us with MPNs, these are conditions that can be managed for a very long time.

It sounds like you have been found to have the CALR mutation with thrombocytosis as the known issue. You are correct to think this could be indicative of Essential Thrombocythemia (the most likely diagnosis), or Prefibrotic Myelofibrosis or Primary Myelofibrosis.

While ET can sometimes be diagnosed solely on the blood test results, MF would need a bone marrow biopsy. A BMB would also be needed to assess the level of fibrosis if MF is present. The BMB would also provide other important information about bone marrow morphology. It is likely that a BMB will be recommended.

There is good information about MPNs from a variety of sources, starting with MPN Voice. Here are a few links that will help you gather more information.

mpnvoice.org.uk/

powerfulpatients.org/help-b...

mpnadvocacy.com/

nccn.org/patients/guideline...

The webinars are excellent. Suggest starting with MPN Molecular Biology

mpninfo.org/conferences/202...

WIshing you all the best as you embark on this journey.

[Old_Coger in reply to hunter5582]

Thanks for your reply, looking at most of the reply's as well as yours it looks like a BMB is probably advisable.

I am trying to get to see an MPN specialist rather than just the haematologist. I would have thought if the haematologist had more info from the blood test she would have specified it in the diagnosis.

I am probably a bit impatient but I like to know exactly where I stand so that I can process everything and plan.

[hunter5582 in reply to Old_Coger]

Definitely include a MPN Specialist on your MPN care team. It is essential for optimal care. Here is a list just in case you need it. mpnforum.com/tsr-the-list/

[Cat1001954]

hi I had to have BMB to confirm ET

[ainslie]

if in doubt about which one you have a BMB is the gold standard as far as I am aware

[jillydabrat]

hi there, my PV was confirmed by a positive Jac2+ gene in my blood test. I have never had a BMB as I was told it was unnecessary after a Jac2+ finding. I have been on Hydroxycarbomide for 9 years and this has controlled my PV very well with only a few tweaks needed over the last 6 months. I hope your condition is as well controlled as mine is.

[Rem31]

My CALR and it’s type was determined by blood test. My first CALR test, done in the very early days of testing for it, didn’t give me a type. I would expect it to be specified routinely on testing now.

When I questioned it I was told CALR type doesn’t affect treatment but knowing it could be useful in the future as more becomes known.