← Return to Anyone have chronic lymphocytic leukemia (CLL)?

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Profile picture for nancybev @nancybev

My doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.

I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!

My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.

Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.

So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.

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Replies to "My doctor just told me yesterday that I have CLL, Stage 0. This came after months..."

Bone marrow biopsies are pretty rare these days; FISH test and other blood work gives sufficient information for a treatment plan, which is often simply watching for disease progression. Hopefully you are getting competent medical advice. If it's available to you, make an appointment with a CLL expert. Check out the CLL Society website, where many are listed.

I am stage 3 CLL & on medication. I get very dry skin & petechiae. I bruise very very easily. However, I am able to play tennis 6 times per week & do pilates 3 times per week. Exercise really helps you feel better.