I am ready to cluck about CAD, ‘The sky is falling! The sky is falling!’
Right now, it's a mixed bag as we decide what to do next to treat my symptoms
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Note: This column describes the author’s own experiences with rituximab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
The first house I remember living in was rather small — small enough that Dad could sit in the hallway and read to my brother and me in our separate bedrooms as we drifted off to sleep. He would change his voice for each character, bringing the stories to life.
One story he read was “Chicken Little.” Not only was the sound of Dad’s voice mesmerizing, but also the characters had compelling names: Chicken Little, Foxy Loxy, Ducky Lucky, and Goosey Loosey. I was hooked.
“The sky is falling! The sky is falling,” cried Chicken Little, who had been playing under a tree when she was smacked on the head by an acorn. Startled, she sets off to tell the king. Along the way, she warns everyone she meets, unintentionally spreading panic and chaos.
Early warning signs
I thought my “sky” had fallen, too, with respect to to my cold agglutinin disease (CAD). After a few setbacks during my infusions, I’ve been meticulous about staying warm, avoiding overexertion, and steering clear of anything even slightly germy. I was expecting to hear good news at my follow-up appointment last week, but my blood work showed that all is still not well in the Mary Lott universe.
It isn’t all hopeless, either. I suppose the best interpretation is that we’re at a point non plus, neither good nor bad. My hemoglobin count is slightly higher than it was at the beginning of March, which is a small, but welcome sign. But my lymphocytes are low, a known side effect of Bendeka (bendamustine hydrochloride) infusions.
Because I had such an extreme reaction to rituximab, the medical team and I have been deciding what to do next. I’ve been following the satisfactory results about iptacopan in its Phase 2 clinical trial, but it’s not yet available to the general public. Neither is ANX1502, an oral therapy now in its proof-of-concept trial that’s intended to suppress complement proteins and reduce or prevent red blood cell destruction, easing CAD symptoms.
My choices are to continue on Bendeka alone, without rituximab, or start Enjaymo (sutimlimab-jome). I haven’t seen any studies about taking Bendeka by itself, so that feels uncertain. Enjaymo isn’t the best choice for me as it would require a lifestyle change I’m not ready to make.
Trying not to panic
All of this has dramatically extended my stay in the U.S. I left my husband, Mike, back home in Papua, Indonesia, last December, expecting my treatment to be relatively quick so I could return by March. Instead, the “acorns” have kept falling — first a hospitalization in January, then blood transfusions, and then reactions to the medications.
Mike plans to take a break from his job and join me here in June. In the meantime, we are awaiting further clarification when I have more blood work at the end of this month. Is the sky truly falling? Or am I simply playing Chicken Little, sounding the alarm unnecessarily?
When I was little, I thought “Chicken Little” was just a silly story. It didn’t occur to me there were life lessons in it I could use today. Apparently, others did and designated April 9 National Chicken Little Awareness Day. Its moral — “Keep your head … and you will keep your head” — is a lesson I am still learning.
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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