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John R A avatar

Others out there with CEL (Chronic Eosinophilic Leukemia)?

Blood Cancers & Disorders | Last Active: Apr 18 11:15pm | Replies (24)
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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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Replies to "@loribmt I've been fighting C.E.L. for almost 23 years now, first symptoms showing late 2003, taking..."
celia16 | @celia16 | Apr 17 2:36am

@lb3 , how were you diagnosed?

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Lori, Volunteer Mentor | @loribmt | Apr 17 9:17am

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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