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Does anyone have chronic myeloid leukemia (CML)?

Blood Cancers & Disorders | Last Active: Feb 14 4:38am | Replies (64)
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@ortina2023

Hi, my name is Tina and I am newly diagnosed with CML, November 2023. This is all so new and kind of frightening. I'm glad to have found this group. It's good to hear how so many of you are successfully dealing with this disease. I currently have been taking 500 mg of hydroxyurea twice a day 7 days a week. Yes, I am often tired, and worried, and unsure what will happen. I am 76 years old, live with my husband of 50 years, and have no other family nearby. Our only son lives six hours away in California. We do, however, have some good friends here in the same town who are very supportive. I go for a bone marrow biopsy and bone exam this coming week. Though I am unsure about the procedure itself (no sedation at this clinic), I know I'll get through it, and I welcome any additional information the biopsy will reveal about my particular cancer. My next appointment with my oncologist is next Friday. I'll be joining a clinical trial and will be put on a TKI, as I understand. Thank you all for being here. It's a comfort.

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Replies to "Hi, my name is Tina and I am newly diagnosed with CML, November 2023. This is..."
Lori, Volunteer Mentor | @loribmt | Dec 9, 2023

Good morning, @ortina2023. I’m so glad you found our group too! It helps to know you’re not alone when you get a new diagnosis, especially when it contains works like leukemia. I’ve been there so I can relate to that wave of emotions.
A whole ‘new’ world just opened up in front of you with learning new terminology, new blood tests, diagnositcs and a new specialist. You’re going to get through this one day at a time. ☺️. I had CML’s ugly stepsister, AML (Acute myeloid leukemia), which is a more aggressive version of Chronic Myeloid leukemia making it a little more of a challenge in treatment. However, I’m here, almost 5 years, later to offer patients hope for a positive future.

Your next step is the bone marrow biopsy. Even without sedation there will be anesthetic injected in the site to minimize discomfort. It’s not so much a sharp pain but more of an intense tugging feeling in the little ridge of bone near one of the dimples above your bum. Remember Lamaze breathing? That helped me through the few minutes that it takes for the biopsy. Try to relax and picture things that bring you joy. ☺️

It sounds as though there has already been some analysis as to potential acquired genetic mutations. You’re going to be in a clinical trial for a Tyrosine Kinase Inhibitor which will target that mutation.

I’m sure you have a ton of questions so I’ve found a couple of information articles for you that I feel are quite helpful.
This from Healthline.com on CML
https://www.healthline.com/health/chronic-myelogenous-leukemia-cml
From the Leukemia & Lymphoma Society (LLS) https://www.lls.org/leukemia/chronic-myeloid-leukemia

The LLS has a great deal of information on their site. This article explains about your TKI therapy.
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/tyrosine-kinase-inhibitor-tki-therapy
Was this discovered with a routine physical or did you have symptoms that had you looking for answers?

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