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Knowing What You Don’t Know

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By Janet Morrison – Patient

”The wise man is one who knows what he does not know.” So says Lao-Tze, an ancient Chinese philosopher. I’ve learned that lesson the hard way during my CLL journey. Here’s a prime example:

Like many CLL patients, I have multiple health problems. I’ve been diagnosed with CLL for almost 12 years. About a year ago, however, I developed Atrial Fibrillation (AFib) and multiple cardiologists actually said I was in heart failure. I knew heart failure caused shortness of breath. I had experienced that and as a result spent most of my day not moving at all. I chalked it up to being my new normal. But it got worse and worse to the point of not being able to walk across a medium-sized room. My heart was also racing, often reaching over 200.

So, to me, that meant calling my cardiologist, which I did.  He ordered some stronger heart medication. I waited many hours. It didn’t help. I therefore finally called my hematologist to see if I should stop taking the new CLL medication that I had been taking for several months. Maybe that was the problem.

With a great sense of urgency in his voice, my hematologist said to go get a blood test right away. My caregiver had to drive me since I was quite weak. Even walking the few steps into the lab was almost more then I could take. The lab test confirmed what the hematologist had suspected—my red blood cells were being destroyed by my out-of-control immune system. That’s called hemolysis and I was diagnosed with autoimmune hemolytic anemia (AIHA), a complication of CLL.

With my hemoglobin at 5.7 there was no time to waste. (Normal is 12 to 15, depending on the lab.) Since I live two hours away from my hematologist and the hospital at which he practices, he ordered me to immediately go to the local emergency room and said that he would call there and give them exact instructions regarding my treatment.

I’m thankful that I finally made that call to the hematologist. AIHA can often cause such a burden on the heart that the patient has a heart attack, which can even be fatal. But, what did I know? Not enough to spare me from getting into this critical situation. So the lesson is learned: make sure your hematologist is informed of any changes in how you’re feeling and ask him/her if it might be related to your CLL. There is no such thing as a dumb question. In fact, it may just save your life.

It was discovered I had CLL in July of 2006 during a routine blood test. I was referred to a local hematologist. After researching online and discovering that there was a blood test call FISH that provided information that would impact future treatment options and provide prognostic guidelines, I called the hematologist’s office to get the test. They had never heard of it. I again searched the internet and read the CLL online forums and discovered a CLL specialist in my area. That has made all the difference. Getting the FISH test with the CLL specialist, it was revealed that I was 17p deleted and unmutated—a finding that suggested future treatment difficulty. I began treatment in February 2012 based on a diagnosis of autoimmune hemolytic anemia. I opted to enter a clinical trial at the National Institutes of Health in Bethesda, MD for a new treatment called PCI-32765, now called Ibrutinib or Imbruvica. I continue to do well on this treatment and am in a partial remission.

Originally published in The CLL Tribune Q1 2019.

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