Polycythemia

Hi Alex AlexMP and welcome to this corner of the Community. This group covers all the blood cancers that do not fit into the mainstream Lymphoma, Leukaemia and Myeloma groups.

I am Mike and help out around our blood cancer groups. I don't have Polycythaemia Vera but I was diagnosed way back in 1999 when I was 43 with another rare, incurable type of blood cancer (Non Hodgkin’s Lymphoma) reaching Stage 4a in late 2013 so I do know this journey rather well although not this specific of this specific condition.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

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Thanks Mike. Much appreciated. I’ll do as you say and have a look around. Maybe some of my questions have been answered in other posts. Thanks for sharing your story too. Sorry you’ve been through so much. 
Cheers

Alex

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I am over 7 years out from my last treatment and doing great (link to my story below) but there were some challenges along the road. 

I have polycythemia Vera and essential thrombocythemia.   I can answer about polycythemia if is polycythemia Vera it’s likely you will have jak2 or calc genetic mutation (not hereditary).  If it’s only polycythemia this is not a cancer and seems to be caused by several things ie toluene exposur, smoking and some other things.  There are groups on fb with lots of experience.  Jak2 and calc can be blood tested, if necessary can have a bone marrow biopsy.   Sorry you have this additional worry.  

Hi Yani C. Thanks for your reply and sorry for the late response. I’ve been crazy busy at work! I am waiting for the Jak2 test. I don’t smoke am very fit and don’t seem to come within the other “secondary polycythemia” categories. But my HB and hematocrit levels were taken today and have skyrocketed with still low EPO levels so I’ve been told I need an urgent blood-letting. This sounds grim and medieval and I’m not sure what to expect. They want to take 600ml tomorrow morning. Is this something that will leave me feeling weak and dizzy or won’t I notice (apart from hating needles)?

Thanks for any advice. 

Alex

Hello Alex,

The Jak2 mutant will be present of you have MF, myelofibrosis. A bone marrow biopsy will confirm. Three years ago I was diagnosed with MF. At that time platelets and hemacrit levels were high. I had a phlebotomy. Painless but time consuming, no side effects, you will be given juice and a biscuit after. Now at year three all my numbers have fallen sharply as the disease progresses. Ruxolitinib prescribed and blood transfusions as the hemoglobin level falls. I did not qualify for a stem cell transplant, the only cure. But you may. Good luck, get as much information as you can, be proactive. Everyone’s journey with these MPN is different.

Naugus

hi Alex.  Make sure you hydrate before and afterwards so you don’t lower your blood pressure too much.  Phlebotomy May raise your platelets!!

Ruxolitinib is not available for PV in England where are you?  Are you seeing an MPN specialist?

Thank you Naugus. That is really helpful. Hopefully, I will get some answers soon. I’m sorry to hear about your situation and wish you the best of luck. 

Thank you for this  Yani C. I’m glad I asked this question. No one has given me any information at the hospital here apart from it needs to be done urgently. I’m in Norway.

Hi Alex

I have recently been diagnosed with an MPN- which you probably know the meaning of by now (Myeloproliferative Neoplasm, bone marrow making too many blood cells). If your polycythaemia (making too many red cells and platelets) is secondary it is caused by an infection, inflammation or some other cause. If it is a primary condition it us called an MPN. There are 3 types of MPN- Essential Trombocythaemia, proliferating platelets- Polycythaemia Vera, proliferatingred cells, platelets and maybe white cells too I think-and Myelofibrosis which involves the bone marrow becoming fibrosis

. If they want to relieve you of some blood it sounds like it could be polycythaemia vera. My diagnosis is ET- I started treatment with low dose aspirin at the end of April, and Peg interferon Alpha 2a 3 weeks ago. No significant side effects so far, no symptoms of ET.

1. For me, when other things ruled out, I was in the end relieved by the diagnosis of ET. MPNs are blood cancer, but not malignant as such, hopefully very slow to progress, stable for decades and with treatment can be managed for a long time. My consultant said that with many of his patients their MPN fades into the background of their lives.

As you and others say- it is really good to find out as much as possible about what is going on- but you have much more experience of that than me already- sorry you have had your cancer diagnoses and glad you are through the first.

Good luck with it all!