Haemo appointment

[Graham7694]

Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof

[Tico]

Good luck with your second opinion this morning Graham.

Atb,tina🤗

[Graham7694]

Morning Tina

Appointment was at normal clinic as still waiting for second opinion.

Platelets have risen to 848 😩

[mhos61 in reply to Graham7694]

Sorry to hear that Graham.

Just been looking over your old posts. Maybe a referral to the hospital haematology department where Tina has been referred might be worth considering.

[Graham7694 in reply to mhos61]

I have a referal to the QE but just waiting on an appointment. The specialist I have been referred to was the one that treated my daughter with lymphoma so I know her well 😊 hopefully I get to see her soon

[mhos61 in reply to Graham7694]

Good luck with that and I wish you well.

[Tico in reply to Graham7694]

So sorry to hear that, what are they going to do medication wise? The sooner you get a second opinion the better! My referral to the Q/E was pretty quick,hope yours is too. Atb,tina.🤗

[Osteomyelio]

What was the reason for stopping HU and Ruxo?

[Graham7694]

So the second opinion came around and yesterday I found myself heading to the QE in Birmingham. A huge hospital (or rather hospitals). I went very early as I was told parking is a nightmare but found a spot straightaway which is Sod's law so had a bit of a wait. The consultant was very understanding of my situation and listened to everything I had to say. I will be having a new BMB on the 14th of this month and a stomach scan . New bloods were also done but not sure on how my platelets are now as he couldn't access Worcesters system but my own doctor had done some a month ago and they had shot up to 931 😩 we had a discussion about Pegasus which is hopeful but will be starting 500mg HU as from today to stop the rise whilst he re investigates and comes up with a diagnosis. I am once again feeling positive for the future 😊