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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (196)Comment receiving replies
Hello! I am glad to have found this group. I have had elevated wbc, C-reactive protein and lymphocytes since at least 2016. I was sent to an oncologist in 2023 who told me I was fat (in so many words) and my body was inflammed. I was overweight but not obese. But I did work at losing 40 pounds and my levels are higher than when I was 40 pounds heavier.
I have a new primary Dr who I love and I want to approach the topic of looking into the possibility of me having CLL. I have been sick (re-occurring sinus infections/colds) since December. I take an antibiotic and get better for a week or so and then get sick again.
What type of tests should I be talking to my Dr about? Thank you for any guidance.
Oh my grandpa had CLL but wasn’t diagnosed until his late 70’s. I’m only 53.
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@lisascherer1 Hi Lisa. I’m so glad you found us too. I think you’ll like it here. ☺️ Welcome to Connect.
From my understanding, while CLL is not directly inherited like some genetic disorders, having a family history of the disease may increase the possibility down the road. With your grandfather having been diagnosed I can understand your concern with changes you’ve seen in your blood test results.
Definitely talk this over with your primary doctor. They may refer to back to a hematologist. Hopefully there are more to chose from that your doctor from 2023. That person seemed a bit prickly with their approach. I do congratulate you on your weight loss because that’s not an easy challenge to take on. But the fact that your numbers didn’t improve after the loss would be an indicator that their assessment of your health may have been based on bias. And that’s not the type of person you’ll feel comfortable with. But initially your Primary could request the proper blood work to get you started.
As for tests to have to help determine or not if you have CLL, this article from the Mayo Cancer Blog is pretty helpful. Though after reading, you’ll see that CLL is more common in older males. But it’s certainly not a condition with limitations to age or sex.
https://cancerblog.mayoclinic.org/2023/02/09/chronic-lymphocytic-leukemia-blood-tests-for-diagnosis-and-treatment/
Have you mentioned your health history and concerns with your new doctor?