Hi Maureen 

Your such an inspiration, and your so reassuring.

I'm trying my hardest to not worry, but anxiety is a horrid thing. A condition I never thought I would have to battle, but I will beat it.

I am looking forward to moving on this year, and getting back to normality.

Keep in touch

Mark

Hi Maureen 

yes you are an inspiration! Every time I read your replies it's like I have written it ,

you say exactly what I want to say - but more fluidly.

Thank you for your posts, and good luck to all our members ,

think positively and don't worry . It is manageable! 
Best wishes to you all

Chauntel

Thank you Chauntel amd Mark for your kind comments.  You are very good for my morale as well.

Maureen x

Good Afternoon All.

Where has the last month gone? 

Time just ticks by so quickly.

I had my 2nd blood test this week, one of the many going forward.

Results today that my platelets are at 1417, highest I have been. My consultant wants me back in 2 weeks for another test. I've gone up from low risk to intermediate risk as well. Continuing with Aspirin at the moment.

Was ok this morning feeling positive that my levels may of remained level. Now i feel worried and anxious again.

The Dr said I will more than likely go onto hydroxycarbamide, to bring these down.

I was only on them for 3 months last year, all seemed ok. Are there any long term effects of these?

Will I still be able to carry on as normal, work and home life? Looking for advice from those of you who have perhaps been on this drug long term.

Any assistance be grateful (Maureen :-) 

Thanks

Mark

Hi Mark

So sorry to hear your count has remained high.  You may know that I was first treated for ET (for a count of 700'ish, with Anagrelide in January 1999, which after 2 years, affected my heart.  I was immediately taken off it and started taking Hydroxycarbamide in February 2001.  Fortunately, the effect on my heart did recover somewhat, but not completely, which obviously affects me as I age.

I have been taking Hydroxycarbamide for 21 years and do not think I have had any side effects from it and my count has remained between 300 and 400 during this time.  By 2001, I had retired but continued an active life, helping my children, running a Guide unit with camping etc, attending regular weekly keep fit sessions, doing home and garden stuff - in fact, a normal life.  I do have 4 monthly blood tests and get a new supply of tablets and am now on my third Consultant, as the first two have now both retired!

I am now 84 and I suppose I must admit to getting older, but I do know that ET is not going to be the cause of my demise.  My mother lived to 90, I think one grandmother stayed to 84 and the other to 96, so I do have a target of survival!!  I have three children, four grandchildren (one over 30) and I am hoping they work out how to give me some greatgrandchildren at some time!  

So Mark, please try not to look for problems or concerns about having ET.  First bonus - you have been diagnosed - luckier than a lot of people, as I was told that ET is not something that is always picked up by doctors.  Second advantage - you are being regularly checked, even though the NHS has been through it most devastating time ever.  Third benefit - you understand your diagnosis, what has happened and what needs to be done to keep you healthy and active for the rest of your life.

Give your loved ones a cuddle and get on with enjoying life!

Maureen 

Evening Maureen 

Your positivity is such a great help for my anxiety regarding ET.

No matter what concerns I have, you got the T-shirt and have worn it.

So I shall not worry, and like you said be positive that Its been discovered and being dealt with.

Just only concern is the wait now, seeing levels are high. Want to get these down and feel im not ticking away inside. 

Fortunately my 9 year old son still gives great cuddles. 

My 12 year old daughter not so much

Thanks again

Mark

Afternoon All.

Just received a call from consultant regarding my high platelet count.

I am being booked in for ultrasound on spleen and bone marrow biopsy.

Has anyone else been through this? I understand its to check my diagnosis is correct and because my platelet count increased quite quickly since last test.

Consultant also mentioned prognosis, but said hydroxycarbamide would still be the treatment.

Such a worry, apparently my blood counts were all satisfactory.

Thanks

Mark

Hi Mark

Your doctors are on the ball, aren't they?  I had a bone marrow biopsy to check the original diagnosis.  It was done at the clinic and they put a local anaesthetic in the centre of my back, just above my waist.  They then pushed was I presume was some sort of needle down onto my spine.  I can't pretend it wasn't painful, but it did not take long (a couple of minutes) and I just held on tight to the hand of the nurse who was by my side.  Re your spleen check.  Periodically my Consultant would feel my left side to check that my spleen was not enlarging, so presumably they are being doubly sure by scanning yours. 

I hope your appointments are arranged at a convenient time for you - it will be good to have things confirmed and to start regular treatment. 

I can understand you are worried and surprised that the Consultant called you.  However that just proves that the medics are there, when you need them, to keep you well.

Bye for now

Maureen  

Evening Maureen 

Thank you again, for all your help in these worrying times.

My wife has just suggested about being able to speak to yourself, would that be ok?

Im happy to post my email address, so we can swap numbers that way.

You have been a great help, since I came onto this forum.

Thanks 

Mark

Hi Mark

If you think it would help you, of course we could chat.

Maureen