I have been dealing with small lymphocytic lymphoma (SLL), a chronic illness, for 14 years. A doctor once told me that your disease will take a step forward and you will take the next step you need to take to deal with it. His most comforting words were, “Most likely this won’t be what kills you. There are new treatments on the horizon.” I was thankful for this hope and encouragement.
However, as anyone with cancer knows, the slightest words and actions can trigger big fears…and no one says it’s rational. It is often an uncontrollable physical reaction. I’m sure some of you reading this know exactly what I’m describing.
My doctor sat in a chair by the exam table and said, “I want to talk to you about something.” There it was…there was that dreaded trigger. What seemed like minutes, I’m sure was only seconds, but enough time for my husband and I to look at each other with a hint of worry.
I am telling you how this appointment began because I also think this is an important part of my story. I want others to know that this feeling is a byproduct that comes along with having cancer. There is no escaping it. A friend recently told me it had been seven years since her breast cancer, but she experienced exactly what I described when a new issue arose for her, which thankfully turned out not to be cancer. It takes a toll on us, though, whether it’s seconds or days until you hear the outcome.
My doctor finally began to explain.“There is a new test available that I would like your permission to run. It is a simple blood test. It’s so new that we don’t have the protocols in place to know what to do with the results. It’s called minimal residual disease (MRD).”
Okay…I felt a sigh of relief. This wasn’t bad news at all. It’s just another tool to let us know if I still have cancer cells after taking the BTK inhibitor, Calquence (acalabrutinib), for a year and a half. He said it is sent to a special lab that uses a sensitive method to find one cancer cell among a million normal cells.
MRD testing is used mostly for blood cancers such as lymphoma and leukemia. It is also called measurable residual disease. As I understand, it would tell me if there were a small number of cancer cells still in my body. It seems that these results would help determine if or when I can stop taking the BTK inhibitor. My doctor explained I could always resume taking the medication if my disease worsened.
The test would also tell us how well the oral cancer pill is working. This all sounded good, and I agreed to have the test done. I thought it would be interesting to see where I am in the disease process since I began this treatment. It would take about a week to receive my results.
About five days later, I received the following text from my doctor. “SLL cells detectable, but very, very low at 0.35%.” I was pleased to see, what appeared to me to be a very favorable outcome. For now, I will remain on the medication, and we will repeat the test at a later time.
So, even though triggers may affect us, it isn’t always bad news. In my case, I was comforted seeing these results and I look forward to a more in-depth conversation with my doctor at my next visit.
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