Hi. I have now had 3 appointments with haematolgy after routine bloods picked up an increase in platelets via my GP. they referred me and the hospital requested a JAK2 blood test - 5 months ago. At my first appointment with haematology I was greated with “I think you have Essential Thrombocythemia” but although your JAK2 was positive it was low so I want those repeated next month: i want you to start taking aspirin from now and I will arrange a tel appointment in 6 wks (but the JAK2 won’t be back by then)That appointment happened. Platelet count still going up slowly. No commitment to formal diagnosis but suggested I check out the info on here and other websites as would find it useful. Just had my next tel consult. The Lab (Salisbury) refused to do the JAK2 test and haematolgy don’t know why and hadn’t thought to find out prior to speaking to me. Platelets haven’t changed. Still continuing to talk to me if I’ve read up on the condition: told me another tel appointment in 2 months, more blood tests. Said they were hoping I could get the JAK2 repeated next month as it would be six months then (?) then went into say going forward I could access an app their patients used to upload information about how I was feeling; checked I was still taking the aspirin and reiterated chemo not until 60 unless bloods etc say otherwise! So slightly annoyed and confused. Understand it’s something I live with but find it difficult to get my head round this “we think you have this here’s an info leaflet, check out these websites and patient forums oh but we won’t commit to that’s what you have” has anyone else experienced this?
Hi @CB75 a great big welcome to our forum.
I am sorry that you are feeling annoyed and confused.
I have Chronic lymphocytic leukaemia (CLL) and I am on what is called active monitoring (sometimes called watch and wait)
I have blood tests every 3 or 6 mths just to check out what my blood tests are doing, whether they are stable of varying.
I will not copy you any of the information on here as you say you have already been signposted to it apart from active monitoring.
Active monitoring (watch and wait) | Blood Cancer UK
Unfortunately our conditions are difficult to give a firm diagnosis on as the symptoms could indicate several conditions.
Perhaps use your post on here as a diary of events and also write down all your concerns, questions and practicalities and get answers you can understand at your next appointment.
We will just take it a stage at a time as I do not want to overload you with more information.
The main thing is that you are kind and look after yourself and please do keep posting how you are getting on.