← Return to CLL leukemia: Just diagnosed, what can be done?

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@wmisyr

I was just diagnosed with CLL through a flow test ordered from my doctor after a routine physical when my WBC was slightly elevated. I have not yet seen an oncologist since the results were just uploaded into my chart with the diagnosis. It’s been a week and I am so unbelievably anxious I can’t eat or sleep. I do not seem to have any symptoms. I have always been in good health and very active. Im just waiting for the referring doctor to call me for an appointment.

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Replies to "I was just diagnosed with CLL through a flow test ordered from my doctor after a..."

Hi @wmisyr, Chronic Lymphatic Leukemia (CLL) is generally a slowly developing blood disease. So it’s not unusual for it to be discovered quite by accident during a routine blood test when you have a physical.

Leukemia can be sneaky. You’re healthy, active, do everything right and then, wham! The good news is that your white blood count is only slightly elevated and you are at the very early point in this journey. You’ll learn more when you meet with a hematologist/oncologist. They may want a few more tests to confirm that you have CLL and the stage of your disease.

I can truly empathize with you and understand the anxiety of the unknown! My own adventure was over 3 years ago with a very aggressive leukemia called AML (acute myeloid leukemia) and I’m now in a durable remission. So I’m here to give you some encouragement that this isn’t the end of your story. ☺️ There are treatments which can help slow the progression of CLL if needed. But it might take years to get to state.
I’m going to post the link to our Mayo Clinic page on CLL to read through. It will give you a brief, but helpful understanding of how this disease develops and possible treatment plans. But I also know how reading some of these articles can put major fear in us so try not get too far ahead of the situation. Remember, this is generally very slow to develop.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
We’ve moved your original post into this active discussion on CLL where you can meet others who have recently been diagnosed or who are veterans of the condition. The conversations are in chronological order so you can start at the earliest and read through all of them. Don’t hesitate to ask questions as you go along. If you see someone you would like to reply to, click the blue reply button and a window will open for your reply. It will send a notification to the @name of that person.
One note, there is a conversation with a member within this discussion who has AML. This is a completely different form of leukemia than yours so you can skip over those replies.

I’d like to introduce you these members who have CLL so you can see you’re not alone. We’re all in this together for support and encouragement. ☺️ @kegraves @pieter1961 @carl50 @mabfp3 @sandiegostu @annieg87 @teddytwo @shirlpat.

Now, please take a deep breath, exhale slowly and try to relax. You’re going to handle this with flying colors.
Don’t hesitate to be your own advocate and call the doctor if you feel this is taking too long! Let me know if you need anything, ok?

Update: I met with my doctor and I will go back in 3 months for a blood test to check WBC she was very encouraging that this just started since I do not have any symptoms and it was found through a routine physical. It’s a weird feeling knowing you have cancer but there is nothing I can do right now 😩.