MPN Voice

thrombocytosis?

Not sure if this is the right place to post this but, I have been under the rheumatologist the past 2 years ( Recently been diagnosed with UCTD start of lupus) my consultant called me last week regards my high platelet levels what have been high since 2011 highest so far is 520 or 580 and said he has spoken to the hematologist but they are not concerned as of yet and will keep an eye on my bloods and he told me not to worry about anything so I was confused why he had called me.

Well Friday just gone the hematologist department called me asking me to come in Monday (Yesterday) for a urgent appointment - well she said i have a high platelet count which has been going up and down since 2011 but has always been high so the graph she showed was up and down not continually going up.... She has done some blood tests not sure which ones but I know shes doing a JAC2 test.

Im quite worried as the whole ward I had to go was a cancer ward for blood cancer and leukemia...

I have to go back to the hospital in 8 weeks time to get my results... But if any one can get back to me with a bit of a update that will be great.

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Don't get overwrought! You haven't got any diagnosis yet.

If your JAK2 test comes back positive then MPN is a possibility but as far as you say, your platelet count isn't horrifyingly high. Mine were 720 at diagnosis and that's with PV not ET.

Like you, I found myself in a 'sunrise cancer clinic' - scary! But.... it's cancer Jim, but not as we know it! Chronic but not aggressive.

Anyway, wait for the results and chill.

Andy

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Diagnosed with same thing 3 years ago. I take aspirin and platelets were 600 now risen to 1124.

I attend haemotology unit at hospital. In UK the Drs see Et as a chronic illness not cancer.. but appears opinion is divided.

Don't panic too much. Drink lots of water and be healthy. Lots of advice on here. Don't worry if you get tired.. be kind to yourself.. it is overwhelming. Ask lots of questions.

I hope it all turns out ok for you.

Hard to be positive about it but you have two choices giving up or living. .

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Just very hard atm as just been diagnosed with start of lupus, had skin biopsy last week so waiting for results now this has happened....

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I disagree with the statement above saying that Dr’s in the UK treat MPN’s as a chronic illness rather than a cancer. It is a cancer but if a Dr is not aware that the classification of MPN’s changed to being a cancer about 10years ago that is an individual Dr problem and not a generic way of treatment in the UK.

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Hi Leanne, I can fully understand how anxious you are feeling at the moment, and will be worrying until you have the results of the JAK2 test, once you have been given a definite diagnosis you can then move forward, if you have a MPN then you can start to learn all about it, I would suggest that you have a look at our website mpnvoice.org.uk, there is lots of very good information on there and some amazing videos of patients talking about their MPN journey. With regards to the cancer ward and MPNs being classified as blood cancers, in 2008 the World Health Organization reclassified the disorders, as they were called, as neoplasms, because the word neoplasm (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms). Now, because MPNs are characterized by uncontrolled cell growth, most haematologists and cancer organizations do classify them as a blood cancer, whatever they are called though, remember that the symptoms and prognosis can vary widely, your specialist will advise you depending on your individual circumstances. So please try not to worry too much, there are a lot of people around the world who have been living with a MPN for many many years. Best wishes, Maz

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Hi Leanne, welcome to this forum where there are so many friendly people who truly understand what you are going through, so you are not alone.

When you are in the process of being diagnosed it's like being on a merry go round you can't get off of. Soon though you will have a diagnosis and will begin your journey of dealing with it. As Maz has said there are many of us have been around for a lot of years so that should be a comfort to you. Yes it is classed as a cancer but although you don't want to have it, it is not nearly as aggressive as many and I think the life expectancy is pretty normal.

When I was first diagnosed, someone on this forum described my illness in relation to football. Breast and other cancers were in the first league and MPNs are in league 6 which put it to perspective for me. As you find out more, you will feel increasingly in control of your MPN and not the other way round.

Keep in touch, do as Maz has suggested and honestly the merry go round will start slowing down and your control will strengthen. Remember you are not alone.

Kindest regards, Aime xx😺😺

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