Et

[Hahag]

I got diagnosed with et last week I've read this is a rare blood cancer is this correct cause my consultant says we don't like to say cancer but we like to say disorder

[Mazcd Partner MPNVoice]

Hello Hahag, in 2008 The World Health Organization (WHO) reclassified myeloprolifertive disorders MPDs as myeloproliferative neoplasms MPNs becauase the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms). Because ET is characterized by uncontrolled growth, most haematologists and cancer organizations do classify them as a blood cancer.

This obviously is very scary, and some consultants don't like to use the word cancer to describe MPNs because of the fear this will cause, but try not to focus too much on that word, MPNs are chronic conditions, so try and think of them in that way.

Best wishes, Maz

[Hahag in reply to Mazcd]

Thank you just wanted to know I know y I was clotting for so long and the damage it's done to me so I know have a name but it's stil very scary I've so many symptoms lightheadness sweating my hands and feet are so painfull I'm so sick on the tablets to

[JackLina in reply to Hahag]

If you were not scared, you wouldn't be human, let's face it! However, to give this a more positive aspect, that classification allows your haematologist to prescribe certain drugs which, previously, they were not allowed to prescribe for this disease, condition, whatever....... Those drugs, although not developed for this condition specifically are having a beneficial effect on patients. I am one of those patients and both the condition and the drugs have effects and side effects but my experience so far has been very positive. My platelets are now within normal range and my body and 'brain' are getting used to the many changes.

it does take time and it certainly has with me but you are now in a position where you can be helped and do not rule out the possibility of researchers finding a cure. It could happen! All the best x

p.s. My experience on hydroxyl was dreadful. Since June this year I gave been using Pegasys. All I can say is thank goodness!

[ccsial]

The World Heath Organization classifies it as a cancer. Of all the MPN's ET is the best one to get. It can transform to PV or MF over time in a few people. I am one of the few. My first 15 years of ET went very well taking hydrea. Age plays into this too. I am almost 75.

[Ovingite]

Hello Hahag

I also have ET with JAK2 mutation, diagnosed about 2 years ago. It can be a bit scary when you are first diagnosed, but for most of us ET can be controlled well by medication without disrupting life too much. The sister site to this forum is MPN Voice and I suggest you look it up on this link as it tells you everything you need to know.

mpnvoice.org.uk/about-mpns/...

If you need any more info just ask on this forum - there will always be someone who has had the same issue and is happy to help.

Take care and welcome to our select band 😊

John

[Wyebird]

I’m afraid he’s wrong. Maz has already replied. Take heed of her reply. She is very knowledgable. Being newly diagnosed is so scary. Take comfort from this site. People are so supportive.