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.

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@deb913

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.

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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?

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@loribmt

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?

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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...

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@johnra

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...

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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?

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@loribmt

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?

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Lori, I am seeing a hematologist at Mayo Jacksonville.

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@johnra

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...

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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

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@loribmt

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?

Jump to this post

Hi Lori,
Thank you so much for writing your own note because I did not see John's response until you pointed it out.

Best regards,
Debbie

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@deb913

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

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Hi again Debbie,
Here is a link, https://www.lls.org/, to the Leukemia & Lymphoma Society. Become a member and complete your profile, and you will receive occasional emails with information about leukemia. When I started with Mayo my team hooked me up with several other websites where you can get information. I will send to you later.
One of the studies I read indicated that the incidence of CEL in the US population was
0.015 occurances/100K people, or for the us that would be about 123 cases.

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Thank you so much John. I really appreciate this information.

Best regards,
Debbie

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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.

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@kpac444

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.

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Hi there, I was diagnosed with CEL in December 2023 and will be having a stem cell transplant this year. I have a Jak2 mutation CEL.
We are a small group for sure and I am happy to share anything I have learned.
All my best,
Debbie

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