Others out there with CEL (Chronic Eosinophilic Leukemia)?

@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.

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?

@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.

@lb3 , how were you diagnosed?

@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.

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.

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?

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.

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

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.