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I've had CML for 20 years and want to encourage others

Blood Cancers & Disorders | Last Active: Oct 22 10:55am | Replies (100)
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@dega

CML Ph-negative BCR/ABL-positiveI am 65 and I have been diagnosed CML in Dec. 2023. Now I am taking HU 2x500 every day. I was told that TKI (Glevec or other) will not help me. I would like anybody with my case to share experience if had taken TKI with Ph-negative form of CML and if that helps them or not. Thank you.

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Replies to "CML Ph-negative BCR/ABL-positiveI am 65 and I have been diagnosed CML in Dec. 2023. Now I..."
Colleen Young, Connect Director | @colleenyoung | Jun 8 12:20pm

Welcome @dega. To help you connect with other CML members like @suzi71 @babyjakejake @anglis and many others I moved your question about tyrosine kinase inhibitors (TKIs) for your type of CML to this existing discussion:

- I've had CML for 20 years and want to encourage others
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/
You're right that Philadelphia (Ph) chromosome negative CML is usually treated with hydroxyurea (HU), low-dose cytarabine and interferon

I found this additional info https://cancer.ca/en/cancer-information/cancer-types/chronic-myeloid-leukemia-cml/prognosis-and-survival
"The European Treatment and Outcome Study (EUTOS) score is based on the percentage of basophils (a type of granulocyte) in the blood and the size of the spleen. It can be used to predict how likely it is that someone will have a complete cytogenetic response after treatment with a tyrosine kinase inhibitor (TKI) such as imatinib (Gleevec)."

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