New , looking for advice and a friend.

[Hometeam2016]

Hi all

I’m new here but I would like to see if anyone could give me advice or any guidance with polycynthia Vera , my red cell are high so is my hemoglobin and also haematocrit sorry if spelling is wrong I’m just upset , so I think pv is on the cards with the doc and also he said thromboysotosis (sticky blood) my level was red cell 5.56

Haemoglobin 17.3

Haematocrit 0.521 ratio also monocytes was slightly raised it’s all scary and I don’t know what to do , I have asthma /centrubular emphysema are the results high ??

Thank you xx

Take care

[Daisy62]

Hi there. There are other things that can cause high blood levels and there are more tests that can confirm whether you have polycythemia vera or not. Has your doctor requested a JAK2 test or a bone marrow biopsy? Are you seeing a hematologist or just your primary doctor? I know it can be scary but try not to stress about it.

I was diagnosed 5 years ago at the age of 54. I take Jakafi and am doing quite well. No major symptoms anymore and my blood levels have been good for a number of years now.

Hang in there!

[Hometeam2016 in reply to Daisy62]

Hey daisy ty for your reply , the annoying thing is looking back it’s been going on years before they refer you to a hemotologist they want 3 blood test readings as high mine always is 2 then a normalOne , I’m talking to the go today hopefully but struggling to get appointments it’s just a worry I google and all I get is blood cancer coming up

[hall2]

Hi I don’t have PV my MPN is ET. But you have come to the right place for advice and support. There is also a buddy scheme where you can be put in touch with a person who also has PV. Max who is the admin on here can tell you about that. There is a link to leave her a message. Good luck.

[ciye]

Welcome, you have come to the right place my mpn is ET, there are plenty on here with PV. Theis is a marvellous site for advice or simply to let off steam. I doubt you will have any problem finding a buddy.

[Mazcd Partner MPNVoice]

hello Hometeam2016, it is very daunting and scary when your blood test results show high readings, and wondering what this means for you, and whether or not you have a MPN. I would advise that you read as much as you can about all the MPNs on our website, mpnvoice.org.uk, this will give you accurate information and will help you I am sure.

I note that you are hoping to speak with your doctor again about your results, this is good, and hopefully you will be referred for further investigations so that you will then know definitively what you have. If it is PV, or ET, then please try not to worry too much, easy to say I know, but if you read the posts on this forum you will see that we all manage well with our MPNs. We are all here to help and support you, so don't feel alone in this journey.

I see that Hall2 has mentioned that I can put you in touch with a buddy, this is one-to-one support from another patient who has the same MPN, it would be advisable to wait until you have had further tests and received a diagnosis before putting you in touch with a buddy.

Best wishes, Maz

[Hometeam2016 in reply to Mazcd]

Thank u

[Hopetohelp]

First of all don’t be scared. It’s not as bad as it sounds. Looking on the Internet is so scary at first until you learn to know what to look for. I have PV and it is all about managing the condition, a bit like diabetes but different obviously. There are many treatment options and if diagnosed with PV there will be one out there to suit you. Lots of help here on this wonderful site. Let us know how you get on

[hunter5582]

Hello and welcome to the forum. I am glad you found your way here. This is a great place to get support and information from others with MPNs.

You will hear from many of us that we manage MPNs for quite a long time. I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lead a rich life and at age 66 continue to do so. Most of us lead relatively normal lifespans, albeit with some challenges at times. Know that these challenges can be managed.

It is true that MPNs are blood cancers; however, ET/PV are typically very slow developing cancers. Many of us look at it as cancer with a little "c" rather than cancer with a big "C". At this point it is not certain that you have a MPN or whether the elevations you cite are primary or secondary. For example, anything that cause hypoxia (e.g. asthma) can elevate RBCs. This would be an example of secondary polycythemia rather than Polycythemia Vera. While the numbers you cite are suggestive of Polycythemia Vera, they are not definitive.

The next step will be to consult with a hematologist. The very first thing the doc will check will be for the JAK2 mutation which 95% of people with PV have. The doc should at some point also check for the other driver and non-driver mutations. One thing to know is that most hematologists do not have the KSAs to provide optimal MPN care. MPNs are rare disorders and most docs lack experience dealing with them. It is very important to have a MPN Specialist on your care team when you have a MPN. Here is a list.

mpnforum.com/list-hem./

It is important to develop a basic understanding of the terms that are being used. Here is a KISS version.

Erythrocytosis =too many red blood cells (RBC)

Thrombocytosis = too many platelets (PLT)

Leukocytosis = too many white blood bells (e.g. monocytes) (WBC)

Hematocrit (HCT) = % of total blood volume comprised of RBCs

Polycythemia Vera (PV) = erythrocytosis. May be accompanied by thrombocytosis and/or leukocytosis. No evidence of a secondary cause.

Essential Thrombocythemia (ET) = thrombocytosis. No evidence of a secondary cause.

"Sticky blood" - there is an alteration in the way blood cells behave caused by the MPN driver mutation. It is not related to the number of platelets. It is about the propensity for blood cells to stick to each other or to the vascular endothelium. This can cause thrombosis or microvascular symptoms.

Hyperviscocity = blood is too thick due to excess RBCs. Increases risk of thrombosis and causes hypertension and other symptoms. Note that blood volume is mostly plasma and RBCs. PLT + WBC < 1% blood volume.

Mazcd gave you excellent suggestions regarding resources from the Voices of MPN site. It is a great place to start building knowledge and find a MPN Buddy. Please know that you will find out what is going on and if it is a MPN, then you will have a lot of time to learn how to manage it.

All the best.

[EPguy]

You're right that MPN, if that is what you have, can be present for a long time before you are diagnosed. (Dx) I think I had it for ~8 years before.

If you get checked for mutations, such as most likely JAK 2, or Calr, MPL and others (these abbreviations may become familiar in your journey) you should request they measure your allele burden. This is what % of your marrow cells (JAk 2 for example) are mutated. I've seen this is not provided often in UK, but you should persist. It can be anything from none at all to over 80%. You will want to know this for future reference and therapy decisions.