Always Bring a Second Set of Ears to Your Oncology Checkup!

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. Catch up on all of Linda's blogs here!

It was the morning of my three-month checkup with my oncologist. My husband said, “Are you sure you don’t want me to go with you?”

I answered, “Absolutely no need. I’m feeling fine. There shouldn’t be any issues to be concerned about, and my medicine is still working great. Just stay home and relax.” I meant every word of that.

Nine months ago, my doctor asked me if he could take my blood to obtain results from a newer diagnostic test. Three months ago, we repeated the MRD test which stands for minimal residual disease. It measures the number of cancer cells that remain in my body after treatment, even when there are no overt detectable signs of cancer. My results came back: The abnormal B-cells represent 0.12% of total cells. When my oncologist received the results, he texted me that it is almost the same as six months ago, but only better. His conclusion at that time was to continue on the same twice a day dosage of Calquence (acalabrutinib).

So, you can see why there was no reason to feel that I needed to have my husband with me this time. This “routine appointment” was to follow up and discuss how I was doing. I told him I was doing fine … feeling great. Then he noticed how much redness there was under my skin on my stomach, which I attributed to the known side effect of my medication. I explained that this was normal for me, and I know that one of the side effects of Calquence is bruising easily. My stomach felt itchy that morning and I was rubbing it to alleviate my discomfort.

“Just from rubbing it?” he asked, looking very perplexed.

“And”, my oncologist continued, “You said this happens even when barely provoked?”

“Yes,” I responded. “I assumed this was the bleeding and bruising side effect I had read about.”

After much thought and discussion, my doctor decided to cut my dose. He explained that he thought this was not a normal reaction. I knew he was concerned when he took a photo of my stomach.

Now, I was getting concerned. I was mad at myself for telling my husband not to come. Here we were planning a potential big change in my treatment. This was such a big appointment that I was now sorry my husband wasn’t with me.

I’m not sure why I have such a hard time with change. Not sure why it has always evoked an uncomfortable feeling within me… good or bad, but here I was facing this alone with no input from my husband, a retired doctor who keeps up with reading about my small lymphocytic lymphoma.

The decision was made to only take one pill a day from now on and see if this will diminish the redness and bruising that I have experienced. The hope is it will still continue to keep my lymphoma under control … enough. I’m concerned and a little worried because this change is huge to me.

The jury is out until the next time I check my MRD level.

You can be sure I’ll take a second pair of ears to my next appointment!

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