Hi everyone!

I'm so glad to find this group! I'm 40 and was diagnosed with ET 3 years ago. I too felt like this was a death sentence at the start but I feel much more positive now. Fortunately I'm only on daily aspirin, I have bouts of tiredness but I'm generally well. 
 

I'm wondering how COVID has affected everyone's checkups? I have had the last 3 cancelled which means I haven't had my bloods checked in a year! I'm getting worried as I remember the Dr. telling me that when your platelets run high, your bone marrow becomes scarred and if scar tissue builds up, it can't be removed and that will cause problems.

Hope everyone is well xx

Hi Danielle,

I have been having my bloods checked every 2 weeks for the last 6 months. Not sure where you live but my Hospital seems to be running as normal in Crawley. 

I would suggest calling your haematologist explain your worries and I am sure they will organise a blood test.

Keep us posted and all the best.

Smudger

Hi Danielle 

I live in the South West and have been having regular checkups throughout the last 2+ years.  Initially this was with the Haematologist, but then he retired over a year ago and although a new one has been appointed, I have not met her yet.  Since he retired I have had my usual 4 monthly blood tests and have been having phone consultations with the Haematology Clinical Nurse Specialist.  I have been taking the same chemo dose for the last 20 years and my count is regular, so no real need to see the main lady unless things change.

As Smudger says, it would seem to be a good idea to check with your Haematology Department or even your GP and ask to have your bloods checked.  I also suggest you keep a diary note of how you feel and the results of any conversations you have with the medics.  It is so easy to think  'it was 2 weeks ago when I... etc'  when possibly it was more than a month ago.  Time passes so quickly particularly when life is busy.

Let us know how you get on.  We do understand being concerned.

Maureen

Hi everyone still having my bloods checked every two months . Been on Hydro tablets since January 2021 

plaetlets coming down slowly but have dropped by about 350 just wondering if it should be quicker . They upped me to two during the week and 1 Saturday and Sunday 

from 2 on 4 days and 1 on 3  500gram tablets 

am I doing unnecessary worrying 

Thanks Michael 

Hi Michael

If you are having your bloods checked every 2 months, then I would suggest that your Haematologist is aware of what needs to be done to reduce the count, partly because he/she has changed the dosage. 

As your platelets are coming down,. it would reassure you if you ask what they are when you are checked.  I have been told that a platelet count of between 300 and 400 is what is aimed for.

If you are worried, talk to your Consultant.  I am sure he will understand your fears and explain more to you.  

All the best

Maureen

Hi All,

i am 32 and my count was 474 a stayed elevated on repeat bloods. I am see that this is lower compared to most? They were also raised a couple of years ago but came down. I saw a haemotologist yesterday who advised me about ET but other things it could be, i have heavy periods and he said something simple like this could cause it. 
Anyway i had so many bloods taken yesterday and today i googled the name of ome of the blood tests and these have come up as all different blood cancer blood tests and now im really worried. Would these be the standard ones the consultant has to ask for? I am such a worrier and looking at my two young boys tonight have reduced me to tears. 
im so glad to have found this forum x

Hi Laurencs899

It would seem that your Consultant gave you a number of options as to the cause of your raised platelet count.  If he has then ordered a number of different blood tests, It would seem to me that he is trying to find out the cause by eliminating all the possibilities at once, rather than waiting to have a couple of blood tests at a time. I know how frightening these investigations can be, but I was always so glad that they were being done.  I wold have hated to have something really wrong with me and have it found too late for much to be done.  In the early days of my diagnosis of ET, I kept a provate diary, noting the tests being done and the results (if I were told them) and also noted how I felt.  If the moments when I felt a bit down or particularly tired happened at particular times, I learnt how to deal with them or could report them when I saw the doctor. 

As others on this forum now know, I was diagnosed with ET in 2000, just before I retired.  I am now in my mid 80s and intend to be here at least another 10 years!  I just keep 'taking the tablets'!

Keep us informed abouth the progress of your tests and remember one thing.  Doctors become doctors and specialise because they care and want to make people better.  They did years of training (particularly Consultant Haematologists) and are there for you.

Enjoy the summer with your boys.

MaureenV x

Thank you so much Maureen for your reply. This has made me feel better. I kept telling myself the tests would be to rule out everything at once however part of my mind was telling me otherwise, i needed to hear it from someone else too! I am so glad i found this forum. I dont get my blood results until September which seems forever. I will of course keep you updated.
im so glad to hear you are well and how positive you are x

I am glad you are feeling  a bit more positive now.  It does seem a long time till your blood results are available, but presumably that is because you have an appointment in September to see the Consultant.  If however, anything that needs urgent attention shows up in the results, I am sure that you would be contacted sooner.

All the best Maureen x

Hi Laurencs899

Welcome to this Forum, here you will get the reassurance and help from people like Maureen. Maureen is such a great help who reassured me when I too was diagnosed with ET last year, and confirmation of being ET CALR+ earlier this year.

Firstly do not google anything!! I made this mistake and got myself into such a state as well. Any questions regarding your bloods speak to your haematologists. 

I am 45 year old male, currently taking Hydroxycarbamide 2 tablets 1 day, 3 next day. Back to 2 then 3, this cycle since February this year. In February my platelets were at 1665, over the last 6 months have come down to 390.

I currently attend a blood test every 2 months, but have over the last 6 months contacted my haematologist to have an earlier blood test if i felt the need. Normally due to getting anxious.

If you have any further concerns please don't hesitate to contact us through this forum.

My apologies for not posting earlier, but I don't appear to be getting forum alerts. Need to check my settings.

All the best Mark