Others out there with CEL (Chronic Eosinophilic Leukemia)?

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...

Welcome to Connect, @deb913 It can be a little scary and lonely to have a new diagnosis so I’m happy you found our great support group. Hearing positive stories from other members who share the same condition, such as @johnra with his diagnosis and treatment of CEL, can really give us encouragement.

It’s also encouraging to hear that you’re having positive results with Jakafi to reduce your eosinophils. What symptoms where you having that led you to a diagnosis?

Hi John,
My name is Debbie. I was just diagnosed with CEL IN December 2023. I am being treated with Jakifi which has helped get my eosinophils under control . I am being seen at Emory Winship. I have a very rare Jak2 mutation. It’s very encouraging to me that you’ve been 6 years being treated. Do you happen to know if you have a Jak2 mutation or what mutation is causing your CEL? I’m curious because there is so little information on CEL and its treatment. I look forward to hearing more.

Thank you for the excellent ideas and references. I've read the articles and my knowledge increased. The idea of a proton pump inhibitor is new to me and I will discuss it with my doctor tomorrow.

Hello @mvoge. Oh my goodness, intense itching is the worst! I had that with some of my chemotherapy and medications…that was worse than any of the other side effects, I swear! I’m so sorry you’re having to endure that! Does anything bring you relief? I hope you find some answers with your labs and testing that are come in up!

I’m sure you’ve read everything available but I found some sites about possible causes of high eosinophils and how to reduce the levels. I know…if it were only that easy!
https://ayu.health/blog/what-is-eosinophilia-how-to-reduce-eosinophil-count/
https://my.clevelandclinic.org/health/body/23402-eosinophils
Do antihistamines help at all? I had high eosinophil reactions to mosquito bites…do to a heightened immune response from my newly transplant bone marrow cells. I saw an immunologist/allergist who told me one of the first lines of defense after trying Benadryl or Claritin, is taking a proton pump inhibitor such as Pepcid. It worked to reduce the load. Just idea for you.

Good luck with your tests and finding answers!! Let what you find out, ok?

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.

Thank you. I sent the link to her.

Yes, my sister. I will forward this link to her. Thank you so much!

Hi @lindaibm Sometimes the planets align and I feel like a fairy god mother. I found exactly the support group you’re looking for regarding Philip’s CPAP machine.
https://connect.mayoclinic.org/discussion/cpaps-and-cancer/
I hope this helps you out. Did you or a loved one use this machine and now have cancer?