Living with CLL with 6q21 Deletion

My CLL journey

Hello World

My name is Robin Lucca, but my coworkers call me Lucca. Recently, I received a diagnosis that changed my life—Chronic Lymphocytic Leukemia (CLL), B-Cell Type, with a 6q21 chromosome deletion. Unlike other cases of CLL, I do not have any mutations, which places me in the intermediate risk category, meaning that while I will need treatment at some point, it’s not imminent.

My journey to this diagnosis started in May 2024 after a routine visit to my primary care physician (PCP). A few days later, I got a call that caught me off guard—my eGFR was low, and I needed to see a nephrologist. Kidney function issues weren’t on my radar, but I took the referral and hoped for the best.

My nephrologist is amazing. After a thorough evaluation, she diagnosed me with Chronic Kidney Disease (CKD) Stage 3. That was unexpected. We had no idea why my kidneys decided not to play nice, so she ran a battery of tests and ultrasounds. To my relief—and frustration—everything came back normal. No clear cause, no definitive answers.

But she didn’t stop there. She dug deeper into my medical history and noticed a trend—my white blood cell (WBC) count had been slightly elevated since my fourth bout of COVID-19 in January 2022. At the time, my PCP and I didn’t think much of it since the elevations weren’t drastic. But now, with fresh eyes on my labs, my nephrologist saw something worth investigating.

She asked if she could run a few more blood tests. I agreed, not thinking much of it. But when the results came back, there was more than just a mild elevation in WBCs—my lymphocyte count was also high. That was the red flag. She immediately referred me to a local hematologist/oncologist for further evaluation.

The Call That Changed Everything

When I met with the hematologist/oncologist, he ran more in-depth blood work. Being a professional medical coder, I had a pretty good idea of what he was looking for—occupational hazard, or maybe a blessing, since I’m fantastic at research.

When my results were posted to my patient portal, I did what any medical coder would do—I analyzed them. Unfortunately, what I saw wasn’t what I wanted. I spent the next several days in a fog of anxiety, waiting for my next appointment, overanalyzing every number and term.

Then, something happened that put me at ease. My hematologist/oncologist personally called me before my appointment. He knew my career background and asked if I had looked at my labs. Of course, I had. He understood what that meant—I knew enough to be worried but not enough to have all the answers. The fact that he took the time to call and check on me meant the world.

He explained that my CLL was B-Cell Type with the 6q21 deletion. He wanted to run three CT scans—thoracic, abdominal, and pelvic—to see if my spleen, liver, or any lymph nodes were enlarged. This would help determine the stage of my disease and the next steps.

When the scans came back, my spleen and liver were fine. However, my pelvic iliac lymph nodes were slightly enlarged. Because of this, I was classified as Stage 1—watch and wait. No immediate treatment, just monitoring.

So now, every three months, I visit my hematologist (my “vampire,” as I like to call him) for vials upon vials of blood work. And every time, he tells me the same thing: “Nothing has changed.”

For now, that’s good news.