Answering questions about CAD and cancer is a long haul for me

“No, you don’t have cancer.”

The doctor was explaining what my bone marrow biopsy had revealed.

“You do have an abnormality in your blood that may develop into either leukemia or lymphoma, but right now, you do not have cancer. We have to watch and wait.”

This conversation was in 2016, when I had journeyed from Papua, Indonesia, to Mount Elizabeth Hospital in Singapore. Lim Zi Yi, a specialist in hematology, was very close to solving the mystery of my various ailments, which included a high white blood cell count. In the ensuing years, I would have a series of seemingly unrelated issues including difficulty breathing, mysterious abdominal pains, and suspected heart abnormalities.

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In 2018, following a medical crisis, I learned that the watch-and-wait period was over. I was in the hospital back in the U.S. at the time. Following a series of tests, the doctor announced I had a rare condition called cold agglutinin disease (CAD), along with “chronic lymphocytic lymphoma,” which seems to have been a misnomer, as no such condition appears in a web search. (Years later, that particular diagnosis would be changed to lymphoplasmacytic lymphoma, also known as Waldenström macroglobulinemia, which does appear widely on the web. I will further clarify all of this during my next appointment in June.)

I was immediately reassured, however, that both of these conditions could be treated with Rituxan (rituximab), and neither were a death sentence.

The Rituxan infusions began a few weeks later. I had lots of anxiety before settling into a lounge chair at the infusion center. Everything went smoothly, and as those four weeks passed, I felt better and better. But this introduced me to an entirely new field of study: CAD and lymphoma. I had lots of questions.

Many of my questions have been answered in the seven years since then. It appears that if I stay warm, I can avoid many of the symptoms of CAD. I’ve also learned that some people experience symptoms while others might not, and everyone feels things in different intensities. It appears that if my CAD is under control, my cancer is undetectable.

More questions answered

So my first question now is which came first; did the CAD cause the cancer, or did the cancer cause the CAD? It makes a difference when being considered for clinical trials and other studies. I had chosen to believe that my CAD came first, but recent information has me thinking I might’ve been wrong.

In March, the Cold Agglutinin Disease Foundation held a webinar that addressed the cause of my consternation. Roy Smith, a hematologist at the University of Pittsburgh Medical Center, indicated that it is a conundrum that may never be answered. He stated that if you have CAD from lymphoma in your bone marrow, “it may take a long time to be able to detect that lymphoma by scanning or by doing biopsies, but yet you present it with cold agglutinin disease.” That’s one question answered.

I’ve been worried that I may have bone cancer, too. For many years, I’ve had a burning ache in my thighs. It’ll appear in one leg and then disappear. After a while, it’ll appear again, either in the same leg or in the other. I haven’t mentioned it to my doctor yet, as I expect that if it were cancer, it would come up in some of the tests. But I’ve wondered.

Happily, Smith addressed this as well. Apparently, it demonstrates the compensation and creation of red blood cells within my bone marrow. “It’s due to an expansion of the bone marrow that presses against the inside of the bone marrow cavity,” he explained. My second question had been answered. It’s most likely not bone cancer.

Many of us with CAD have an accompanying blood cancer. Apparently, while it is possible to have one without the other, some of us are special in this way. If I can stay warm enough and avoid the worst symptoms of CAD, perhaps it will keep my lymphoma in check as well.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.