Essential Thrombocythaemia

Hello Debbo - I would say 'welcome' but I guess none of us really wants to be here.

I'm no expert on ET as so far I am very fortunate in not experiencing many side-effects either from the problem or the medication (which, in my case is hydro-carbamide and baby aspirin).  May I suggest you pop along to https://healthunlocked.com/ and their MPN Voice Community where you will find lots of people all experiencing the same health concerns and more than happy to help where they can.  

The other site I thoroughly recommend you reading through is http://www.mpnvoice.org.uk

as it is full of useful information about our condition.

Hi there,

If you've got any problems or need any help, remember you can email community@macmillan.org.uk and we'll be able to help.

Jess

Macmillan Community Team

It is a blood disorder that in most cases can be controlled. 

However it is still a form of bone marrow cancer,  but not chronic myeloid leukaemis which is to di with the white cells in the blood.

Thrombocythaemia is too many platelets, also they are not prooerly formed,  they are rogue cells. They cannot do their proper  job.

Without treatment we are liable to bleeds/stroke or clots - heart attack oy emboli.

When I was diagnosed in May 2017, I was very shocked as I had been ckeared and discharged at another hospital the previous year.

Bone marrow biopsy confirmed the diagnosis.  I didnt believe the consultant at first but quickky came to the realisation that he was talking sense,  when he said I had to go on chemotherapy  straight away.

They put me on Hydroxycarbamide 500mgs daily with 1000mgs Sat and Sunday.

At first after the disbelief had gone I was very scared, then I got angry. 

I am still angry,  I cant believe it was missed, I cant believe its something else gone wrong with me. I get angry at everyone even God, though I know he has nothing to do with it. I am grumpy all the time.

Anger and grumpiness is not part of my personality.  Its all very strange.

I trust the science and the medication but Im still angry.

Hi Laraine

I had a similar experience, i had been under the hospital for 2 years when i suffered a blood clot on my brain and was subsequently diagnosed with Polycythemia Vera. This was 5 years ago so its disappointing to read that Dr's aren't routinely screening for these MPN's which is a simple full blood count. I have also found that most Dr's know very little about these cancers. 

Stay strong & positive xx 

A was dignosed with et yesterday how does it effect u 

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you have been diagnosed with ET

20 years ago I was diagnosed with a rare type of T-Cell Lymphoma blood cancer but Essential Thrombocythaemia is just that touch on more on the rare side and does fall between the cracks on the cancer forums we have.

But lets see if any of the folks who posted before will pick up on your post and also look back at the posts in this thread as there are some other information sources.

You could also put Essential Thrombocythaemia into the Search Box - Top Right as you will pick up more information.

Caroline - Macmillan Heamatology Nurse may be able to help you out as well as our other experts in our ‘Ask an Expert’ section but please allow a few days to get answer.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.

We also have our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers - just go to the bottom of the home page and have a look through the list.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

When you have time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.

Always around to try and help out.

Hello... 

Are you still on here?