Blood cancers

I have a blood clotting condition called Anti-Phospholipid syndrome which has caused 3 strokes so far, I was on warfarin for life until I had a life threatening bleed into my pelvis last august when it was changed to daily injections of fragmin. I had no problems with warfarin until that point. I self tested my Inr and it was always stable. I was also tested for the jak2 gene as I was over producing platelets and still do but the test was negative.

Yes I’ve read about PV. I have the mutated JAK2 gene so it’s definitely ET. Being tested in case it’s progressing towards Myelofibrosis, which is the 3rd of the mpns. My haematologist refers to them as cancers and I’m currently on daily chemo tablets with 2 weekly blood tests until all my other tests are completed. I make too many platelets and because of gene status, age, high blood etc I’m classed as high risk! I was hoping for a peaceful retirement but with weekly visits to hospital atm it’s anything but peaceful! Does the warfarin stop you doing anything and are there side effects? I hope you know those of us with mpns are quite rare?

Not blood cancer as such but a few years ago I had blood tests which showed a clotting disorder called polycythaemia and because of this I had to have regular tests in case I had to have the venesection procedure where they draw blood from a vein.

It's the bone marrow over-producing red blood cells which can lead to clotting within the body causing Thrombo. which is what you have. I prefer to call it a disorder of the blood rather than cancer.

As it happened, after a final blood test there was no sign of the polycythaemia but nevertheless I still remain to have a blood disorder because I take warfarin for life. I'm prone to clotting as my mum's sister suffered from thrombosis so it's genetic in my case.

Depending on the progression of your disorder venesection will be performed if they think it's necessary but the disorder is a slow progressive one.