Thanks Hadi,

You have been a great help, your words have been a great assistance for me.

I thank you, and hope your mum continues as normal.

I will try and carry on as normal.

Just been nice to air my worries outside my household.

I am new today to this chat,  but for sure will be on here reading and posting frequently.

Thanks 

Mark

Your very welcome. 

Thank you

Hi Mark

You have not had a fun time during 2021 but am so glad your surgery was successful.  Obviously it is reassuring that hydroxycarbanide is a successful treatment as your platelets reduced so well.  I am also glad to hear they are monitoring you regularly.  That said, I suspect that they will consider continuing treatment to reduce your platelet count, if it remains high.

I am nearly twice your age and have been successfully treated for ET for the last 22 years with daily hydroxycarbamide (recently reduced to 5 a week) and, as I have written before on here, I intend to reach the same age as my maternal grandmother, which was 97, if nothing else gets in the way!

Re your sleep pattern - as you know, 8 hours or so is a recommended length of time that our bodies need and you are getting that.  If you want a bit more evening, try adjusting your bed time, so that you wake a bit later in the mornings.  As your daughter is 12, you may find that in a few years, you will need to be awake longer into the evening, in order to fetch her from her evenings with friends!  The bonus to that is, when they reach their 50s, they start to transport you to your evening activities!!

Let us know the result of your next checkup and remember, we are all living and enjoying life, while managing ET. 

Wishing you and your family an enjoyable Christmas, Maureen

Morning all,

Thanks for support the other day, a couple of further questions.

Once I was diagnosed with Calr ET,  the doctor said I would be monitored with blood tests every 2 months. Is monitoring a standard procedure?

Also how do you continue every day without being anxious? Just feel like im a ticking time bomb, hate knowing something within can have the potential to end my life earlier.

Thanks 

Mark 

Hey Mark 

I am like you with 12 year old and three step kidss. I had ET diagnosis just after birth of my son after year of different tests end with bone marrow.

I'm still here like everyone else helped by taking to regular medication and routine testing. I was monthly tests and now down to every three months once they see count stable for over year if I remember. 

I see it that they caught this in time before a major clot happened. I do open up to this forum as family and friends don't understand what the condition feels like or what the meds do. So keep using it.  

I now take anagralide meds which I have been on since around 2018. Your meds was initially given to me as count reached aroun 1400 so helped to bring under control but was exhausting and as working parent I wanted better life balance. I dropped hours to work part time for NHS and moved to new meds that I mentioned. I also get monitoring for blood pressure as yes trying to juggle everything can stress things it is normal to feel like this. It's not for everyone but you can always check with your consultant and remember in your appointment that you know your own body not the doctors. They are there to support not dictate. Good luck with the future.

Morning NM9309

Thanks for your response,

I have good days and bad, I am grateful that my condition has been found. The hardest thing is trying to remain positive, reading how these conditions can be life changing. It's the anxiety of it all, at this current time I am seeing a Counsellor for not just this but getting over the post anxiety of brain surgery.

Just feels now any ache and pain is magnified within your body making me more anxious, ever since having bad news from one funny turn months ago.

I've had such a roller coaster of a ride since diagnosis of tumour this year. Including the weekly blood tests for over 3 months. To see if hydroxycarbamide was reducing my platelets for brain surgery, which it did. These were tough months, worrying and emotional but I  managed to contend with it all. 

Never thought after brain surgery, i would have this ET to contend with. At moment im on 1 x aspirin a day. See what this achieves, all I ask is medication is given early enough to stop it perhaps further progressing.

I have just had a walk, and it was lovely. Just helped to clear my head.

Its lovely to read other stories like yours. It does make you realise I am not alone. 

I do hope you and your family have a nice Christmas.

Keep in touch, and good luck.

Mark

Hi again Mark 

NM9309 mostly answers your questions,  For the last 22 years, I have had blood tests every 4 months, when a new supply of tablets have been issued.  I also was given Anagrelide, which was on a trial, for the first two years, but it affected my heart and I believe that now, anyone taking Anagrelide is checked for that side effect regularly.  

Right at the beginning, I was told that, although it is now counted to be in the cancer realm, it will not kill me.  I was told that the effect it does have on my body is to possibly cause heart attacks or strokes, because the blood is clotting more than it should. Therefore, medication and regular checks mean that the platelets are kept to a normal and regular level to avoid unnecessary clotting.

As NM9309 says, keep track of how you feel and of what happens to you, the doctors are there to support you.  HMD advises you to find things you enjoy in life, so put ET in its place and make it a small part of it.  You are then in control.

Cheers

Maureen

Thanks Maureen,

I did type a lengthy response, but it appears to have annoyingly vanished.

I will keep this short and simple, and thank you all again. 

I will try and stop googling about Jak2 and Calr, as this is where I find out worse case scenario.

Will try and be positive, and go with the monitoring knowing its for my best.

Kind regards 

Mark 

Morning All.

Platelet count back, has increased to 1289 from 900 about 2 months ago.

More worrying is my Potassium has gone upto 6.1.

Was unaware until today, this had been high over last few blood tests. Around 5.4 on average. 

Anyone else suffered high Potassium alongside platelet count?

Thanks again for being here.

Mark