I have recently been diagnosed with essential thrombocythaemia. All a little overwhelming still. Not completely sure how it progresses - whether it gets noticeably worse as time goes on, if it is well managed and monitored, which it is currently. Does it become noticeably worse?
5 Likes
Hi @berylsmart a great big welcome to our forum, I am so glad that you have found us.
Firstly I attach a link to the Blood Cancer UK website on Essential thrombocythemia (ET).
Essential thrombocythaemia (ET) - what is it, symptoms, tests and treatment | Blood Cancer UK
It is natural that you feel overwhelmed, I expect your diagnosis came as a shock.
It is best to ask your specialist nurse, if you have one, or consultant at your next appointment because they know your whole medical history.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting as I would like to hear more about you.
The main thing you can do is to really look after yourself and be kind to yourself
3 Likes
Hi @berylsmart. @Erica has given great advice and pointed you in the direction of the support line if needed.
Feeling overwhelmed is so natural and I don’t know about you, but when I was diagnosed with lymphoma my emotions were all over the place.
I’m really glad you have found the forum. You will find it a great support where you can say exactly how you are feeling and there is always somebody to listen and offer support X
2 Likes
Hello @berylsmart
Welcome to the forum and we hope that you find this a supportive and informative space.
@Erica and @Nichola75 have already given you great support and information. If you would like to speak to any of the team do please get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
3 Likes
How are you are doing ok @berylsmart 
1 Like
Hi diagnosed with Essential thrombocythemia (ET) myself … initial pallet count 973 … went on to taking Hydroyxuea at 1mg seven days a week … after taking medication felt like I had been hit by train … whole body ache ing and tired … after several months changed medication to … angraeglide
Which is working better and feel better in myself taking it . 1.5 mg a day two tablets in the morning one in the evening … platelet count down to 560 . Not sure if this is a high dose but would like to reduce it.
My mother also has Essential thrombocythemia (ET) probably now for last twenty years been on hydrouyxea every other day and she is doing fine …
Hope this helps
trying to ascertain what the best medication is to take myself and what is an acceptable dossage amount .? Kinda think that sharing helps .
3 Likes
Hi @AaronJames1 I am so glad that you have found us.
So your mother also has Essential thrombocythemia (ET) and sounds as if she has had it for a while.
Yes, I definitely think sharing helps, you are now part of our form family.
I think that our fears, thoughts, emotions and practicalities bond us.
As for your questions all we can do is our personal experiences.
I have found that writing down my fears, symptoms, questions, medical issues and practicalities means I cover everything I want to clarify at my next appointment.
My medical people decide the best dosage for me taking lots of things into account but often tweak the dosage or how it is administered.
Don’t agree to anything you are not happy with, patient care should be ‘patient led’, perhaps you might want longer to consider options.
The Blood Cancer UK support line is there for you on 0808 2080 888.
I hope others will be able to share their experiences.
Really look after yourself and please do keep posting
1 Like
Hello there @AaronJames1, welcome to the forum. I’m sorry to read of your diagnosis with Essential thrombocythemia (ET) and those high platelets.
I’ve taken daily hydroxyurea 500 mg since diagnosis with Polycythaemia vera (PV) (a related type of Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET)), and went from frequent complete blood tests and phlebotomy (fortnightly, initially) to monthly blood tests and phlebotomy when my haematocrit is above 45 %. My platelets have stayed in the ‘normal range’ since treatment started and my other blood cells seem to be behaving too.
Sorry not to have any experience of anagrelide to share. Sounds like it helped a lot with your fatigue symptoms. I also experienced horrible fatigue after starting hydroxyurea but it faded over a few months and is manageable now, in case you ever choose to take hydroxyurea again. Although I’m not a doctor, I’d say it’s worth bearing in mind that hydroxyurea is considered a chemotherapy and can affect fertility. It also makes our skin photosensitive and dry, which I definitely felt this summer.
Perhaps have a look around the forum for others taking anagrelide? I see it’s a common treatment for people with Essential thrombocythemia (ET) whom hydroxyurea doesn’t agree with. Glad to hear it works for your mum!
Here’s the Blood Cancer UK information about Essential thrombocythemia (ET) in case you’d like a read: Essential thrombocythaemia | Blood Cancer UK
And here’s information about treatments for Essential thrombocythemia (ET), including anagrelide: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
Glad you found the forum @AaronJames1, do please keep us posted about how you get on. Maybe your mum might like to join the forum too?
1 Like