Polycythemia

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Hi,

I’m a 52 year old man with successfully treated high grade bladder cancer and now the beginnings of prostate cancer (which doesn’t yet need treatment). I’ve been feeling really exhausted recently which is unlike me as I am very active - run marathons etc. Now some blood tests have come back which show I have “polycythemia”. It hasn’t been confirmed what type yet but they want to exclude by further tests whether it could be caused by a carcinoid tumour or if it is primary polycythemia. My HB is 18.5, hematocrit 0.52 and EPO is low.

I’ve googled a bit and am thinking that I can’t be so unlucky that I have a third type of cancer. Could anyone explain what the difference is between the different types of polycythemia and what a carcinoid tumour is? Are there any more tests I need

Also, would having these high blood readings cause the exhaustion I feel? I have also been complimented throughout the winter on how brown I look, which is unusual for me and I live in Norway(!). I am not my normal colour. Could this be related?

Sorry for all the questions. Just grateful if someone could answer any of them!

Thanks

Alex

Flip 10 months ago in reply to AlexMP

I have ET, with Jak2 mutation. 55/60% of ET patients have this, 95% of PV.

If they find you have the Jak 2 mutation it is pretty likely that you have PV.

Hope this is helpful.

As others have done I highly recommend MPN Voice. : )

AlexMP 10 months ago in reply to Flip

Thank you Flip for your very helpful explanation and experiences. I will also look at MPN Voice.

I had my blood letting yesterday and I don’t know if it is in my head but I feel much better today!

The doctor just rang and said I would need another soon but that I should hear from the hospital hematology department in a few days.

Thanks again!

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