Hi John,
I am so glad to hear back from you and a big thanks to Lori because I did not see your reply and only realized you had replied after seeing her post.

Regarding Jakifi - I believe Jakifi is specifically for treating Jak2 mutations (and be glad you don't have that mutation because my understanding is that it is hard to treat).

But I am so happy to hear from someone else with CEL because having this particular cancer feels very lonely and isolating since there is so little information and even the expert doctors cannot seem to give me any actual statistics on incidence, treatments and prognosis. In their defense, I think the problem is there are so few of us that it is hard to get meaningful statistics - but it is frustrating. If you have any sources or info on CEL I would love to hear what they are.

My journey in a nutshell: I have lupus and the hypereosinophilia was caught incidentally - I felt fine and was initially only diagnosed only with HE. But during more in-depth testing we discovered I had the Jak2 mutation. At that time we were hoping it would not progress to CEL but after only a few months I had another bout of HE and was diagnosed with CEL. I look forward to hearing from you. Best regards, Debbie