@dreamspinner3

I think mastocytosis is caused by the a KIT mutation. It's fairly easy to differentiate from ET, which is usually caused by JAK2 or CALR, mutation.

@dreamspinner3
Thank you for your reply. No, no other alternate causes have been discussed by either my PCP nor my oncologist. I am JAK-2 positive.

After reading your post, I did a cursory search on mastocytosis. I have none of the outward symptoms mentioned, and all my other lab work is normal. My high platelet counts and JAK-2 mutation are the only abnormalities they've found.

I also have no outward symptoms of ET, but many people don't, especially in the early years of it. I get tired a little more easily than when I was younger, but then I'm 78 now. It doesn't affect my daily life so I just call that getting older. I can walk several miles, climb stairs, etc.

At my first specialist appointment, he said my PCP had already done the tests he would have done. The specialist did not discuss doing a bone marrow biopsy and I did not ask for one. If my disease worsens or if/when I have to go on a chemo pill and if things don't go well with that, I'll of course start asking more questions. For now, things are going well and I'm trusting these two doctors in their diagnosis of ET.

I will keep your post in mind, of course, for the future. Again, thanks.