Good evening Mark and Maureen

I just wanted to jump in quickly to let you know that if you want to share contact infomation you can do this through the private messaging service on the forum. 

To protect your privacy the forum terms and conditions don't allow members to share personal contact information in the public domain. 

I hope this helps. 

Best wishes, 
Jenn
Cancer Chat moderator 

My apologies Jenn.

Will click that link know.

Thanks 

Mark 

Morning Maureen 

The moderator stopped my email address last night.

I have followed the link, that was sent. Im hoping you should of received a friend request which you have to accept.

Thanks 

Mark

Afternoon all,

Any help be grateful, received blood results today.

All normal bloods are good but my LDH was high 654.

Slightly concerned as read this can be an indicator of tissue damage and cancer progression.

Anyone else had high readings, and are these linked to ET and PMF?

I also have a bone marrow biopsy to confirm whether I am ET or another MPN, perhaps consultant doing this due to LDH reading.

Also anyone had night sweats? Was awake at 2am feeling sweaty, but not to levels mentioned online.

Thanks 

Mark

Hi Mark 

I don't know about these levels related to ET but be assured that the monitoring is doing its job and observations on your condition impact on your body. The specialist will monitor different organ functions because of this which is good as it's proactive.

The bone marrow test helps narrow your condition  and best way to advise your individual treatment needs. Not gonna lie the test procedure it does hurt so best to stock up on your painkiller dosage that day and ask for it at the time. The spleen monitoring is about your test levels affecting how your organs routinely function usually get every 5 years.

I have the night sweats waking through early hours since about five years ago and agreed at my reviews it's a mixture of symptoms and side effects of me taking anagralide. I'm on this long term in opposite to others on this forum as the hydroxycarbamide did not help body function with daily life and too fatigued.

Always keep your notes and discuss with your medical team especially about the levels that are concerning you. Don't suffer about the unknown.

Good luck with tests 

NM

Hi NM

Thanks for response,

Fortunately no further night sweats. Think I may of just been hot. 

I realise the Bone marrow procedure is normal, but since the discovery of a tumour and going through brain surgery. I am petrified of any tests and results.

I received my blood tests as mentioned, everything is normal range just high platelets. 

Have also signed up for MPN voice, they also have a lot of information on there site.

Thank you for your reply

Mark

Morning All

Bone Marrow Biopsy on Wednesday, to check that my ET diagnosis is still as diagnosed.

Spoke to consultant yesterday, he explained all my bloods clinically still point to ET, everything good.

Just platelets keep going up, now at 1668.

Being placed back onto hydroxycarbamide from next week. Why and how do I remain positive and unscared of BMB procedure. Is it a standard check with ET?

Thanks 

Mark

Thanks Maureen 

Think this BMB result is really worrying me. It feels the haematologists know more then they are letting on. Sure they aren't but never thought my life would be governed like this. Still strange to accept this new normal.

Will keep you updated and thanks again, i hope you wasn't affected by last weeks storm?

Mark

Hi Mark

I believe that they just need to confirm their diagnosis and it is a reliable way of doing that.  The biopsy should show that the bone marrow in your body is making too many platelets for some reason. 

Our bodies are a masterpiece of engineering really - all the systems working together, the fuel being utilised to best effect, growth and repair all organised - so occasional adjustment or change of use is to be expected.

Things do happen to us as we live our life and there is no guarantee that it will all be plainsailing, but I am glad I was diagnosed and treated, which probably helps to avoid a more serious problem for me. 

You will get through this Mark - the last twelve months have not been your best ever - but as the saying goes 'Keep taking the tablets' and look to a bright future.

Maureen x

P.S.  The storms did bring down some tress on roads in Cornwall, but we had no problem at all in our garden - trees still upright and sheds still sound, although it is Spring here - primroses, grape hyacinths, camellia, new leaves on the roses and the quince is in full flower.