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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)
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@mraymond

Yes he was tested for cancer but everything came back negative. They only told us that high eosinophils can cause cancer and since his were high for so long its a big possibility. His bone marrow biopsy just came back with very high eosinophils. Every lyphmnode in his body was swollen when he went into the er. He gets another bone marrow biopsy done next month. They were certain he had leukemia when brought into the er but test came back negative. Yes the nucala is working very well. His levels haven't been above 900 with the nucala shot. We give the shot to him from home once a month. He has labs done biweekly now. Everything is so confusing to us they can't give him a prognosis but tell us this will be a lifetime struggle for him and is incurable.

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donnahes | @donnahes | Nov 24, 2022

I’m so sorry to hear that about your grandson It mimics what happened to me. However when I was in the ER and admitted I had terrible swelling of my face
Which occurred every day for weeks. It traveled to my neck, shoulders and caused terrible weakness. After many tests and a bone marrow which showed no signs of cancer I was given the diagnosis of HES. Thankfully no organs were damaged from the elevated EOS. I was told that this would be a lifelong condition and that it is considered a pre leukemia condition however in what I have read it is not a common thing to occur. As long as the EOS are controlled the diagnosis should not alter our way of life or for that matter our length of life.

Did they test your grandson for allergies. What caused your grandson to have to go to the ER. Did he have symptoms?

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