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Overt Myelofibrosis, grade 2 fibrosis with 30% cellularity, and splenomegaly 21cm. CALR1+, with ASXL1, and TET2 mutations. Blasts only at 2% which is good but that's an increase nonetheless. LDH 800's, RBCs <4.00, HGB 11.5. PLTS 600, slight lymphocyte elevation. nRBC's 10 with polychromatic cells, darcocytes, and ringed cells. Bone scans show "Diffuse osteosclerosis" and I don't know if that means advanced fibrosis or if that's just super common with us MF people.

Symptoms are fatigue, pain in… read more

I am on Medicare and Medicare Drug Plan, using AARP, I was just thinking about going to Jakafi and the price I am being quoted is around 2900.00 per month for 10Mg twice a day. Just curious what the real cost is. I can go to my Cancer Center and ask them to try for a better price, still won't know what the price should be.

I had a spleen ultrasound done today. I’ve been having symptoms. They said it measures14.4by14.1by8.1cm. Enlarged. Has anyone had this and what’s the treatment? I have ET since 2013.

Hi, I’ve recently been diagnosed with ET and the Jak 2 mutation and platelet count around 600, I’m 61 with no symptoms so far, so this has been a massive shock.
I’m taking aspirin but reluctant to start taking Hydera which will be recommended at my next appointment at the end of the month.
Is anyone else here from Scotland? What had your care been like are there any real specialists anyone has seen ???

I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!