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?
It was a routine CBC prior to my regular 6 month checkup with my primary care doctor. Platelets were 800+ so he ordered a second test days later and they were over 900. Referral to hematologist, first diagnosis was thrombocythemia, more tests, platelets rose to over 2000, test for Philadelphia chromosome was positive, new diagnosis CML, and I was put on hydroxyurea. I’m very glad you’re doing well almost five years past your own diagnosis! And thanks for those links. Information is so helpful at this stage.