ET JAK2 wth pre fibrotic myelofibrosis

Living with and after blood cancer
,
21

Hi Erica and Heidi

I have had no improvement In fact my ferritin is in the 900’s and my platelets have not come down much. I have a very crusty butterfly rash on my face with adds to everything. I am still on Besremi upped back up again to 175ml two months ago. I feel awful after the jab for a week and then again a few days before the jab. During theses times I have severe migraines which I treat with Maxalt Melts. I am in constant pain especially my left hip and leg. I prefer to stay in bed all day as it’s more comfortable. My appetite has gone and I am losing weight not through exercise but through lack of food. I want to know what questions to ask next Monday when I see my Haemo - blood test this Thursday. I feel like I’m a ticking time bomb. Just sitting and waiting and not living - my umph has gone. I am usually a very positive action person where has it gone?

Jola

22

Oh @Jola13 I always write down my questions before going to an appointment.

I also clearly write down my symptoms and how I am feeling in a list as it shows it up so well.

I am not medically trained but if I lose my appetite I have to think of food as fuel otherwise I lose my fitness, strength and mental wellbeing

Perhaps ask what can be done to get you your umph back and help your symptoms.

An appointment is a two way process so perhaps be ‘pleasantly assertive’

Please do let us know how you get on and really look after yourself