Others out there with CEL (Chronic Eosinophilic Leukemia)?

Thank you for informing of the MMP75 test. I will follow up on that. Do you have symptoms that you think are specific to Chronic Eosinophilic Leukemia?

Hi - I have been diagnosed with chronic eosinophilic leukemia and the test that diagnosed it was next generation sequencing test called MMP75 at my hospital but different planes have different tests. This tests for all types of jak2 mutations plus more. I mention this because my first hematologist said i did not have the jak2 mutation but my second hematologist k ew about this other specialized test and unfortunately it showed I had a very rare jak2 mutation and I was undiagnosed with CEL. I also want to mention that my doctor told me it is not good to have high eosinophils so we use various medications to keep them below 2000 (jakifi and hydrea). Now you might have a different kind of CEL with different treatments, but I wanted to share my experience since many places do not perform the special test I mentioned. Good luck and I’m happy to share any other information I have.

I am in the process of determining if I have Chronic Eosinophilic Leukemia. My eosinophil count has been 29,000 for 2 years without symptoms. Since December 2022 I have intense itching and rash in large and small patches. Swollen ankles, extreme fatigue and the eosinophil test is 31,000. In the next ten days I will have further labs and possibly an echocardiogram. I hope to have an answer soon because my quality of life has changed significantly.

Hello i get a HES/CEL diagnostic. I will be happy to get in touch with somebody how has more experience. I see than is very rear this issue. Thx.

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

Thank you for responding, John! I just want to make sure @deb913 sees this reply so that both of you can Connect. It appears that there aren’t a lot of CEL cases so it’s really nice to have someone you can talk to about your journeys with this chronic eosinophil condition.

Just for informational purposes, Jakafi is another medication that can sometimes be used with different blood conditions. HU is the frontline treatment for most but Jakafi can be a backup drug. So if HU is working for you there may be no need to ‘change horses in the middle of the stream’. ☺️

You had an astute pcp to send you for further testing with a bone marrow biopsy/analysis. Do you see a hematologist or is your pcp directing treatment?

Hello Debbie,
Great to hear from you. I made my original post almost a year ago, and it took that long for another CEL companion to respond. The statistical probability of the disease suggests that there may be only about 120 persons in the US with CEL.
No, I do not have the Jak2 mutation. This means that the disease will not respond to imatinib. I have not heard of Jakifi. I will ask my heme/onc about it. I take hydroxyurea every day. Its only function is to control the eosinophils to a reasonable level. I live in Jacksonville, FL and see receive treatment from the Mayo Clinic here.
I was being treated for symptoms by dermatologists for almost two years before my pcp suggested that I have a bone marrow aspiration and blood analysis. That was in March 2020, and the diagnosis of CEL(nos). Nos is "not otherwise specified", because there was no identifiable genetic mutation. My symptoms were itchy rashes on the back of my legs and arms. They were "controlled" with topical and injected steroids. With my current treatment these symptoms are largely controlled and I use a topical gel, tacrolimnus, to treat pop up spots. This is a medication that is used to treat psoriosis (sic).
I would love to hear more about your journey.
Kindest regards,
John...

Thank you for responding, John! I just want to make sure @deb913 sees this reply so that both of you can Connect. It appears that there aren’t a lot of CEL cases so it’s really nice to have someone you can talk to about your journeys with this chronic eosinophil condition.

Just for informational purposes, Jakafi is another medication that can sometimes be used with different blood conditions. HU is the frontline treatment for most but Jakafi can be a backup drug. So if HU is working for you there may be no need to ‘change horses in the middle of the stream’. ☺️

You had an astute pcp to send you for further testing with a bone marrow biopsy/analysis. Do you see a hematologist or is your pcp directing treatment?