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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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celia16 | @celia16 | Apr 17 2:36am
In reply to @lb3 "@loribmt I've been fighting C.E.L. for almost 23 years now, first symptoms showing late 2003, taking..." + (show)
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@loribmt

I've been fighting C.E.L. for almost 23 years now, first symptoms showing late 2003, taking until October 2009 for a diagnosis. Spent 6 years feeling like I'd slept in a bed with poison ivy sheets, poison oak pillow-case and poison sumac pajamas, while having a 3rd degree sunburn over 90% of my body and chicken-pox all at the same time, 24x7x365.25... By the time of diagnosis, my eosinophil count was over 27k. Heart infiltration, optic nerve, every joint in my body. Also exacerbated my type 2 diabetes as eosinophils bind to insulin receptors. 16 years after starting Gleevec, I'm still kicking, albeit, not very high. I now suffer from CIDP as my compromised immune system started attacking my nervous system.

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@lb3 , how were you diagnosed?

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lb3 | @lb3 | Apr 17 8:23am
In reply to @celia16 "@lb3 , how were you diagnosed?" + (show)
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@lb3 , how were you diagnosed?

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@celia16

Bone marrow extraction at the John Stoddard Cancer center in Des Moines, that was hand delivered to the Mayo Clinic for genetic analysis. Mine has the genetic flip flop of the two markers that I do not recall the names of at this time.

All I do know for certain is that I was end stage, heart palpitations, black-outs, occular migraines, renal failure and joint pain like I couldn't believe, from eosinophil infiltration. Within 2 weeks of starting Gleevec, this was before the generic imatinib was available, my eosinophils went from over 27k to 40. My next A1c went from 15 to 5. Instead of less than 6 months to live, I'm still here 16 years later.

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Lori, Volunteer Mentor | @loribmt | Apr 17 9:17am
In reply to @lb3 "@loribmt I've been fighting C.E.L. for almost 23 years now, first symptoms showing late 2003, taking..." + (show)
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@loribmt

I've been fighting C.E.L. for almost 23 years now, first symptoms showing late 2003, taking until October 2009 for a diagnosis. Spent 6 years feeling like I'd slept in a bed with poison ivy sheets, poison oak pillow-case and poison sumac pajamas, while having a 3rd degree sunburn over 90% of my body and chicken-pox all at the same time, 24x7x365.25... By the time of diagnosis, my eosinophil count was over 27k. Heart infiltration, optic nerve, every joint in my body. Also exacerbated my type 2 diabetes as eosinophils bind to insulin receptors. 16 years after starting Gleevec, I'm still kicking, albeit, not very high. I now suffer from CIDP as my compromised immune system started attacking my nervous system.

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Welcome to Connect, @lb3 Oh my goodness, you’ve certainly suffered with your CEL (chronic eosinophilia leukemia) over the years. Eosinophils are a portion of our white blood cells that play a role in the immune system by helping fight infections and producing inflammatory responses. Sometimes, high numbers of eosinophils can crowd together at specific areas of body, causing medical conditions linked to inflammation which can affect multiple areas of your body.

Thankfully you finally received the diagnosis so you could find a treatment! I am sorry to hear that your condition is now attacking your nervous system.
Have you had a 2nd opinion to see if there is more that can be done for you besides taking Gleevec?

Just tossing this out there, but in severe cases of CEL an allogeneic bone marrow transplant has been helpful. With a transplant using donor cells, you receive an entirely new immune, healthy immune system.

What type of treatment are you receiving for your CIDP?

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lb3 | @lb3 | Apr 17 10:20am
In reply to @loribmt "Welcome to Connect, @lb3 Oh my goodness, you’ve certainly suffered with your CEL (chronic eosinophilia leukemia)..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect, @lb3 Oh my goodness, you’ve certainly suffered with your CEL (chronic eosinophilia leukemia) over the years. Eosinophils are a portion of our white blood cells that play a role in the immune system by helping fight infections and producing inflammatory responses. Sometimes, high numbers of eosinophils can crowd together at specific areas of body, causing medical conditions linked to inflammation which can affect multiple areas of your body.

Thankfully you finally received the diagnosis so you could find a treatment! I am sorry to hear that your condition is now attacking your nervous system.
Have you had a 2nd opinion to see if there is more that can be done for you besides taking Gleevec?

Just tossing this out there, but in severe cases of CEL an allogeneic bone marrow transplant has been helpful. With a transplant using donor cells, you receive an entirely new immune, healthy immune system.

What type of treatment are you receiving for your CIDP?

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@loribmt

Having been on imatinib for 16 years, multiple oncologists have suggested not to change anything as my eos counts remain at around 300, with no plaques or itching, no palpitations or ocular migraines.

I do twice weekly subdermal infusions of hizentra, 2 x 50ml, injected through 6 needles across my abdomen.

I reacted badly to gamma-guard and one other iv infused immunoglobulin type. 2 widow-maker heart attacks, 2 years apart, each within weeks of receiving the IV infusions. I now have 5 stents in and around my heart.

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