Walking backward on ice to treat my cold agglutinin disease
Findings suggest the way to manage cancer-related CAD is to treat the cancer
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My mom returned to her college studies in 1963 when we first moved to Auburn, Alabama. We lived across from the campus of Auburn University and she could easily walk to the buildings where her classes were held. The winter quarter began in January just after the so-called New Year’s Eve snowstorm.
My memory is that ice, more than snow, covered the rolling, hilly sidewalks, and no one could walk anywhere. It was just too dangerous. Somehow, though, Mom made it to class and had a tale to tell us at supper that night.
She said that as soon as she stepped out our front door, a student slipped on the sidewalk across the street, almost breaking his leg. She saw others try to make it down the slope, and every time they would take a step, they’d slip backward, losing more ground than they had gained. Eventually, most gave up.
Yet, Mom persisted. We asked her how she did that. She replied that when she saw that for every step others would take, they lost two steps. So she just turned around and walked backward.
With my cold agglutinin disease (CAD), I’ve been on that same sidewalk. Perhaps I should turn around and walk backward, too.
Continuing treatments
Since my diagnosis in 2018, my medical team has primarily been treating my CAD and following a watch-and-wait scheme with my lymphoplasmacytic lymphoma, which is sometimes called Waldenström macroglobulinemia. The diseases actually go hand in glove; I would not have CAD if I didn’t also have Waldenström macroglobulinemia. The manifestations in my body, however, are CAD symptoms. The lymphoma wouldn’t have been detected without CAD.
Recent blood work has shown that a change in treatment is imperative. In June, I saw some progress with coaxing my hemoglobin — a protein in red blood cells — back to normal levels. However, there was a distinct drop again in mid-August. In essence, my blood cells had taken one step forward and now it’s gone two steps back. This was confirmed with a recent blood test on Aug. 24.
After seeing my blood work results, my doctor suggested that I begin a treatment of Brukinsa (zanubrutinib). I considered that a step forward. Then he said he would closely monitor my blood work for the next two or three months to check for any improvement.
I wonder if I’ve just slipped two steps back! All year I’ve been trying to find some direction for the future and the way forward is still not clear. Although this is not good news, it isn’t bad news, either. I am encouraged to have an oral treatment and not yet another infusion. Also, this is apparently a new way to treat CAD.
The new game plan
I did not have to go far to find some information about this new-to-me treatment. A recent article published on Cold Agglutinin News notes that “modern, targeted cancer treatments have reduced” the effects of CAD.
“Because newer therapies are generally more effective at controlling cancer, the findings lend credence to the idea that the best way to manage cancer-related CAD is to effectively treat the underlying cancer,” the article says. This is exactly the route my doctor has proposed.
I anticipate starting treatment on Tuesday, but am feeling some trepidation. I don’t know much about the medicine other than what I read on the internet. I’ve been told it is a Bruton tyrosine kinase inhibitor that works by blocking proteins that drive cancer cell growth and survival. I really don’t understand it. I have a vision of a fat, little Roman soldier in my blood veins, thrusting his shield in front of him and declaring, “This far and no farther.”
Switching over to treat the underlying cancer feels weird. For the last eight years, I’ve been trying to walk down a slippery sidewalk to find my way to a cure. Like Mom claimed she did to get to class that day, I’ve turned around and have started walking in the other direction.
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.
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