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PhoenixPat started following
User: Barnum75
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PhoenixPat started following
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PhoenixPat wrote on confusedcml's wall
Hello confused, you're not alone, this happens a lot with a CML diagnosis. Many people, including a lot of medical professionals, are not familiar with how it is treated. it would help you to have a better understanding of CML. If your physician has not explained the disease, treatment and monitoring it very well there should be others on the team, such as a physician assistant, nurse practitioner or social worker, who can answer your questions. In terms of online resources, The National CML Society website can help you, as can the CML section of the Leukemia and Lymphoma Society website. In the initial period after diagnosis CML patients are often treated with medication to reduce the white blood cell count first. Treatment often doesn't start immediately. Treatment is with oral (pill) forms of chemotherapy known as tyrosine-kinase inhibitors (TKIs) for most patients today. They are very expensive and there are sometimes delays in getting approvals for them. It is also important to understand a patient's CML as much as possible so that the right treatment is chosen from the start. Be careful about going online. Much of the information online about CML is out of date and in many online groups you will get advice from people with other forms of leukemia, which are treated very differently from CML, and that makes everything even more confusing. Try to take a deep breath. You have a lot to absorb, and this isn't easy. You do have time. The most important thing to keep in mind is that CML is a chronic or slow growing form of leukemia and there are more options than ever before for treatment. The majority of patients today can be treated successfully and go on to live a normal lifespan. I wish the very best for you. Take care.
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PhoenixPat posted an update
Very frustrating site.
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PhoenixPat posted an update
Sorry for the post. Just trying to get the right diagnosis on my profile and unable to remove the one that's there.
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PhoenixPat posted an update
Chronic Myelogenous Leukemia (CML)