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Polycythemia/Brain Tumour?

Hi

I had a meeting with my consultant on Wednesday after having some more tests.

I have been diagnosed With Polycythemia JAK2 for over seven years now and they have been baffled as to why I still have very high Erythropoietin at 205 when it should be about 15. I have numerous venusections but the levels remain high.

The consultant has now stated to me that I need to go for a head scan because if all the tests I have had done so far prove negative as they have done then its possible I may have a small Brain Tumour which is causing the problem. Obviously I am quite worried now and wondered if anyone else has been in the same situation.

Looking at the links it shows that Polycythemia is a secondary to a brain tumour and not the other way around which technically means maybe the brain scan should have been done some time ago when they could not understand why i had it. I have always been told that my Polycythemia was Primary.

Happy New Year to you all. Noel X

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Hi Noel, sorry to hear of your worries, not a great start to the new year.

Sorry I can’t answer your question but I’m sure someone will be able to. The main thing is you get your health sorted out. Thinking about you, please let me know how you get on.

Kind regards Aime xx+ E hugs too.😺😺

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Hello Noel,

sorry to hear this news. I am of no help I’m afraid, but I hope someone with a medical background can alleviate your worries.

As Amy has said, keep us updated. We’re here to support you.

Mary xx

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Thanks Mary will keep you posted xx

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Thanks Amie and Mary I meant to add that I am JAK2 Negative which just makes a little harder to answer for the Consultants X

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Hi Noel.. I'm -ve too. I haven't heard of this before but understand the frustration. Wishing you luck. Keep us posted on how you get on.

Claire xx

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Yes will do Claire just waiting for an appointment for scan xx

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I would think JAK2 positive means the polycythaemia is primary not secondary to a tumour? Hope all goes well xx

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Thank you I will keep everyone posted xx

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In my thoughts.

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Thanks Roger

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Hi Noel

Sorry to hear you have all the additional anxiety at the moment. You can get secondary polycythaemia from EPO secreting tumours from the lung liver kidney and brain.. The latter seem to be more linked to the cerebellum which is the back of the brain involved with balance. They can be very slow growing and tend to be a vascular type tumour rather than a nasty progressive thing. I think if you have been diagnosed for 7 years the reassuring thing is if they do find anything on the brain scan it must be very slow growing particularly if you aren't having any symptoms of dizziness or headaches.

Have you had scans to check your kidney/liver as that can be easily done with an ultrasound scan?

Anyway good luck on Wednesday with the consultant- at least if you have the brain scan they will be able to rule that out as a cause. The other thing you could do as an interim is to get your eye pressures checked with your optician as they can be raised if their is increased intracerebral pressure from things like tumours. They could also check your visual fields are ok too.

Good luck

Heidi (GP not haem specialist)

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Hi Heidi

Thank you for your helpful reply. I have just had a CT scan on my abdomen but haven't yet had the results. I have of late been suffering with some headaches and have previously had dizzy spells. I have done some research myself and if I do have a brain tumour it definitely does point to the polycythemia being secondary to that. Which is a concern because I have always been told that my polycythemia is primary and because of the rare form which I have (apparently 1 in a million) the science and research is not available at this time to understood the cause fully. I am now wondering my a brain MRI scan has been done before bearing mind my heamo consultant is always telling me that he is baffled with my condition as venussections dont seem to work. I am yet to have the MRI scan on my head so I will wait and see what the results of that is. If you don't mind I will keep you updated.

N x

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That's fine Noel re keeping me in the loop. Good luck and hope the CT abdo scan results ok and hope the MRI brain scan date soon for you.

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Hi Noel, I have just found your post. I’ve had Polycythaemia - cause unknown, for over 4 years. I have no JAC2 or other mutations so have just been treated by venesection when my PCV reaches 0.45. A small meningioma has just been found incidentally on my frontal lobe. I have no significant symptoms for either Polycythaemia or brain tumour. I have an appointment with my haematologist in late April when he has agreed to discuss the possible connection with meningioma and Polycythaemia. My understanding is that meningioma tumour cells can produce EPO which is what triggers red blood cell production. I think my EPO level was normal. The brain tumour CT scan has been referred to a neurosurgery team for advice and I’m waiting for for more information. Like you I didn’t have a brain scan when the Polycythaemia was identified. I’ll post what my haematologist says about meningiomas and any connection to secondary acquired Polycythaemia.

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