Just a quick check in and catch up, glad to read things are going ok Keith.
I have had a few quarterly check up’s now since my diagnosis and while I am still young (relatively), the only medication I am on is daily 75mg aspirin as both conditions cause blood thickening and omeprazole.
My Waldenström macroglobulinaemia (WM) is holding it’s own and stable for now but my Essential thrombocythemia (ET) is busy producing more and more platelets which is not what i wanted but still below the point the consultants consider treatment is required.
Fatigue is a bit of a battle that some days I’m winning and others less so but guess thats part and parcel of being in such an elite little club.
I will try to drop in from time to time so don’t think I have forgotten about you.
Good to hear from you, and glad all your symptoms are stable.
I have had a few problem”s all my BT were GOOD the Haematologist said the Essential thrombocythemia (ET) was GOOD and could be in remission ? then I had a melt down back in hospital for more tests at the same time the supply of PEGSAY 135 mcg was NO longer available so ALL medication has been STOPED for the last 14 weeks .
Last week I had another Blood Test and saw the Haematologist 3 days later BAD news Essential thrombocythemia (ET) back again and all Blood Tests gone back to where they were before I started PEGSAY Injections
Today I managed to get hold off 1 box of PEGSAY with the hope of 1 more next week ( fingers X ) early next year I have been told supply could be back to normal ?
My general health is all over the place still not eating properly and very tired NO ENERGY but I do what I can there is aways tomorrow.
