Hi @Brenthebaker, please keep doing what you say is ‘rambling’ , I call it information, support and sense.
Just a quick update - my phone appointment for February has been cancelled, due to covid. I know it is hard for everyone , but at least most of you have a diagnosis, treatment, can talk to a consultant . I am not even in the system - completely let down by he NHS.
2 Likes
Hi @worriedM, yes, I have just had a May appointment changed to November, I have rung the department and been given a cancellation appointment, it is for a potential reoccurrence of another cancer I have had.
What is the next stage for you now your phone appointment has been cancelled?
There is no next stage. I will phone on Monday, but this was supposed to be my first appointment.
2 Likes
Hi @worriedM, please let us know how your phone call goes and perhaps also tell them your fears and how worried you are?
Update - I was given a new appointment ,in March.
1 Like
Hi @worriedM it must be a terrible time having to go through all of this on top of dealing with the pandemic situation. I hope that you are able to get peace of mind soon. I know that I’ve felt frustrated by the telephone appointment situation and have often been left thinking my medical team are not interested in what happens to me. When you place your trust and your life in their hands it’s not good. Let us know how your appointment goes.
1 Like
Hi all, just a quick update, as everyone here has been so helpful. My NHS consultation postponed again, I had to get some tests done privately ( full blood count and JAK2 £900), and last week results came back my platelets were 475 ( I think), but I am JAK2 positive as well - apparently. At the moment I am on aspirin, and feeling fine. Long may it remain this way 
3 Likes
Hi @worriedM, thanks so much for updating us. I am glad you have got your private blood test results, back but that it is meant that your NHS consultation was postponed again.
I am glad you are feeling fine and please keep us updated and stay safe.
1 Like
Hi WorriedM .I’m in the same boat as you. 7 years ago I had PE .Spent 4 days in the hospital. I was put on Xarelto. In a few months I could not walk. it turned out the Xarelto was affecting my leg muscles. My hemothalogist changed the prescription to Eliquis. In about a month the pain was gone until today. The problem . A few months after i left the hospital my platelets went to about 700 .My hemothalogist performed a bone marrow aspiration and the test came positive for ET and jka2. He prescribed Hydruxiurea.500mg twice a day. After a few months my platelets stabilized to normal like 350. But after about a year I started losing my food taste. it got real bad. I asked my dr. if I could try Anagrelide. My food taste improved a little but not 100%. I’m still on Anagrelide 1mg twice a day. My last blood test my platelets were 250. I am 86 years old and I feel ok. So. Hang in there. As I understand people like us can live a normal life. If I was you I would not be worried. 500 platelets is not too high and you never had PE. P.S I noticed that many people have problem seeing a specialist in the UK. Here in the US we seniors have plenty of specialists. You may wate maybe one month for an appointment. But if you already have an established dr. or specialist, is very easy to communicate. If I have a question, I get an answer next day.
2 Likes