1. < Blood Cancers & Disorders

Others out there with CEL (Chronic Eosinophilic Leukemia)?

Posted by John R A @johnra, Feb 26, 2023

I know there are at least a few. It would be nice if we could start a new discussion just for us so that we could compare notes.
I have had CEL for about six years, three diagnosed and treated. I use hydroxy urea every day and it controls my eosinophils at a moderate level and I have only minor eczema like plaques on my legs and arms. They can be pretty itchy. Only future hazard is conversion to ACL which would not be good.
I am looking forward to meeting you. My name is John, I live in Jacksonville, FL.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

deb913 | @deb913 | May 4 12:27pm
In reply to @mvoge "I am in the process of determining if I have Chronic Eosinophilic Leukemia. My eosinophil count..." + (show)
@mvoge

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.

Jump to this post

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.

REPLY
1 reply
mvoge | @mvoge | May 4 6:19pm
In reply to @deb913 "Hi - I have been diagnosed with chronic eosinophilic leukemia and the test that diagnosed it..." + (show)
@deb913

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.

Jump to this post

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?

REPLY
1 reply
deb913 | @deb913 | May 5 9:15am
In reply to @mvoge "Thank you for informing of the MMP75 test. I will follow up on that. Do you..." + (show)
@mvoge

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?

Jump to this post

Hi - I have never had any symptoms with my CEL. It was found early during routine blood work for my lupus. By the way at some point you will need a bone marrow biopsy along with the MMP75 test to definitively diagnose CEL. You need to see a hematologist oncologist not simply a hematologist in order to figure out if it is cancer or a non cancerous issue. Also, according to my doctor, elevated eosinophils can cause damage so they should be brought down whether it is cancer or not. Good luck. And I’m always happy to share anything I know.

REPLY
View MoreView Less
Please sign in or register to post a reply.