Others out there with CEL (Chronic Eosinophilic Leukemia)?

Good morning, @johnra I’ve scoured our forum for other members who have Chronic Eosinophilic Leukemia so that I could help connect you. You’re a rare bird!

This is a great idea to start a new discussion about CEL. Be patient, it may take a little time for people to start trickling into the forum. But I’m a firm believer of “If you build it, they will come.” ☺️

It’s encouraging to hear you’re maintaining status quo after having this for 6 years. How were you finally diagnosed 3 years after the onset? What were your symptoms?

Noone!!?? That's amazing. I had been going to dermatologists for about two years for treatment of extremely itchy patches of skin mostly on the backs of my legs and some on my arms. I see my PCP regularly and have annual blood tests. He noticed that my eosinophils were climbing and well our of normal range. I had a marrow blood sample taken and the mutation for CEL was identified. My Dr at Mayo Jacksonville started me on Hydrea (hydroxyurea) immediately. I still get occasional outbreaks of the exzema like plaques, and treat them with tacrolimus. Hopefully my CEL does not convert to AEL.

Hi Lori,

Can you please help find posts or a group that has been diagnosed with cancer and used a Philip's CPAP machine? I'm not having much luck. Thank you!

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.

I hope this helps you out. Did you or a loved one use this machine and now have cancer?

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

Thank you. I sent the link to her.

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 @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!

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?

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.

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.