Hi Oana

I see that Inas has replied to you and that you have read some previous posts.  I think that saying you are 'a bit scared' is probably an understatement.  When I was first diagnosed (over 20 years ago), I was anxious and a bit frightened, as I didn't know what the future might hold.

Reassuring haematologists, blood tests and medication turned my fears to 'normal' quite quickly and, as you see from my reply to Inas, I still feel 'normal'!

Enjoy your little girl - they grow up too quickly (my daughters are 58 and 51) and I hope you have a lovely summer.

Maureen 

Hi Inas, 

Happy to hear that you are better. Hopefully i will be more optimistic soon. My platelets last time were 580 and going up every time i have my blood tests done. I am still on aspirin. All the best for you xx

Hi Maureen, 

I love your positive attitude. My platelets this week were 580 and just going up with every appointment that i have. I am taking just aspirin for now. I meet my haematologist in 6 weeks again. I have received the exemption certificate for prescriptions,i dont know if you guys have this. Thank you foe your answer and also enjoy your summer xx

Regards, 

Oana

Hi everyone first time I  have posted here in a few months 

I saw my consultant on 4 October first time since January 2020 a long time

i am on 500 mg Hydra daily now started on 5th October 

after two years on aspirin daily a bit worried as to how it will go but as I said when first diagnosed 

The help and encouragement I got from this group has been my rock 

Thanks again to everyone here and I hope everything goes well for all

Thanks MICHAEL 

Hi Michael/Goonerfitz1 and everyone

What a strange time it has been for the past year or so, but gradually coming out of the woods onto the green pastures to start and explore again.  Now had my booster jab so will feel more confident about meeting in groups of others. 

I have continued to have 4-monthly blood tests and phone consultations with my haematologist.  Over the last year, he has reduced my dose, so I now only take one Hydroxy.. on 5 days a week - weekends off - so I must be doing something right.  Sadly though, (but happily for him) he has now retired - the second one to do this to me, so am waiting to hear who will 'look after' me now. 

Stay well and enjoy the run up to the New Year.  Hopefully we will be able to make plans next year, without suddenly having to change them and life will return to normal for us all.

Best wishes everyone

Maureen 

Hey everyone, it's my first time posting here so I'm not sure if I am doing it correctly (I just clicked the reply button)

I'm 27 years old and have found out I'm being tested because of my platelet count being high. They have ruled out infection and anemia (though I am borderline anemic) and they aren't telling me much more, just that I now have to wait 3 months to find out what's going on which is worrying.

My platelets have been high and rising for a long time but they said since 2019 it has been significant and only just been picked up.

I'm very confused as the doctors aren't explaining anything to me, just throwing thrombocytosis and bone marrow issues at me as an explanation and not explaining what any of that means.

They said after my results in three months I may need a bone marrow scrape.

I found this thread and saw that three months between tests is how they see changes in platelets, however they have evidence of raised platelets for the past two, nearly three years from my CBC tests.

Is this normal? If I ask will they explain what they're testing for or do you think they are reluctant to do so?

Sorry for all of the questions, and if no one can answer I dont mind I understand how it is to be tired all of the time and how much energy replying takes.

Hope everyone is well, I currently have covid but had both of my jabs so I don't feel as bad as perhaps I would have.

Thanks, L x

Morning L,

My name is Mark, unfortunately for me I was diagnosed with Essential thrombocythemia Calr in june this year. 

I was diagnosed whilst I was in St Georges Hospital awaiting surgery for Meningioma Brain Tumour removal.

My platelets were to dangerously high for this surgery, around 1000 if i remember correctly. So after a night in hospital being prodded and poked for following surgery, i was discharged. 

I was placed on hydroxycarbamide and took these daily, to reduce my platelet levels. Thus eventually making surgery safer.

After 2 months of anxiety, stress and being scared of the surgery that I had to have. My platelets dropped to under 400 on hydroxycarbamide.

I had successful surgery in August, and since then have stopped taking hydroxycarbamide.

2 months ago I attended a blood test and my platelets have increased to 900. I was told that due to my age (45) and health I am a low risk person.

Low risk or not, im finding it difficult to remain positive. I have a blood test next week, then every 2 months onwards. I feel like my life has been shortened, I am married with 2 kids. Daughter 12 and son 9, who I want to see grow up, marry and start their own families. 

Tiredness for me, is early evening. I find i fall asleep around 9pm. Not sure if this is due to ET or fact I awake early around 5am. Then pretty busy during the day, trying to occupy my mind and forget about this new diagnosis I have to contend with.

I feel like the rug, has yet again been pulled from beneath me. So soon after being diagnosed with a brain tumour. Which has been successfully removed, but was a battle to remain positive from diagnosis in May 2021 to removal in August 2021.

I feel i have defeated one Major health battle, and now this. Any support be grateful from any other ET sufferers on here. I need to hear positive things, as googling this ET results in negatives as well as positive results.

Any advice, stories will be grateful to read.

Hope this helps L, please keep in contact.

Mark (smudger)

Dear Mark,

My mum was diagnosed with ET 2 years ago. Her platelet count showed over 600. She has been taking hydroxyurea and Anagrelide tablets as well as aspirin. Occasionaly her haemoglobin number goes up, otherwise there is absolutely no issues thankfully she lives just like anyone of us. Currently her platele numbers flactuates around 350 to 400, thats after every 3 months blood test. From the stories ans from what ive read, I do not see any reason to be worriee at all. Just take care and do any kind of light sport as any healthy person would need. Hadi 

Hi Hadi,

Thanks for quick reply.

I'm usually a strong person, but today I feel emotional and scared. Think worried as blood test next week. Just feeling like this is an invisible battle, one that unlike my tumour cannot be removed. 

I successfully defeated the tumour, now this. Why is life so horrid? 

21 years in fire service helping others, never thought I would need help and reassurance.

Thanks 

Mark

Exactly when things are about to load up in our head, thats when we need to say .... it and instead ill do something to enjoy. 

It may sound an invisible enemy but dont take it more serious than an allergy or something similar that has no cure but has treatments. 

You will get to normal for sure but meanwhile i would suggest to do something differen that you enjoy. 

Life can only be ***** if we allow it.