A blue-goo fiasco reminded me of new CAD treatments on the horizon

It was the worst thing I have ever done to my skin. There was no way I could get over to my dad’s that evening with this stuff on my face. The lower third of my face was blue!

I was trying out a new product for removing some excess hair. I’d previously been using melted wax to perform this overhaul. As it so happens, I had depleted the wax from earlier usage and needed more. Alas and alack, the product was no longer offered for sale. So I ordered something else by the same company, trusting that high standards would be maintained with this new product.

As I peeled the seal of the container prior to placing the goop in the microwave for warming, the first difficulty presented itself. My fingers stuck to the seal, which had some of this new blue goop on it. I wondered how it would remove hair if it was this sticky and viscous at room temperature? Even with this premonition, I persisted.

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That stuff was tacky and not firm. I couldn’t pull it off my face! It didn’t wipe off, even with hot water. My entire chin was covered in sticky, blue goop.

There was no way I would go out in public with any trace of the blue goo on my face. I scrubbed with warm water. Then I used 50% alcohol, then 70% alcohol, and finally, 91% alcohol to break the mixture down. It took all evening before I was presentable. I think I’ve gone through a similar experience in treating my cold agglutinin disease (CAD).

Living with CAD has felt a lot like that blue goop: sticky, persistent, and hard to manage. CAD is an autoimmune, hemolytic anemia triggered by cold temperatures and the destruction of red blood cells by the body’s immune system. I’ve experienced symptoms for decades, but was diagnosed in 2018.

Although I was successfully treated with rituximab and a combination of rituximab and bendamustine, that treatment is no longer available to me. So, like my facial treatment, my doctor and I are considering alternative avenues.

What’s in the pipeline?

In February 2022, the U.S. Food and Drug Administration (FDA) approved Enjaymo (sutimlimab-jome) in the U.S. to reduce the need for blood transfusions due to hemolysis in adults with CAD. I have chosen not to follow that route right now because it would force a considerable lifestyle change.

One option we’re weighing is using bendamustine alone. The FDA has approved it for certain blood cancers, and I do have underlying non-Hodgkin lymphoma. Bendamustine works, in part, by depleting my B-cells, a type of white blood cell that attacks invading pathogens. I’ve been treated with Bendeka (bendamustine hydrochloride), so the adaptation to bendamustine wouldn’t be overly complicated.

In addition to these approved therapies, other investigational treatments are on the horizon. For example, gamgertamig is currently being developed for the treatment of CAD and other autoimmune diseases. It is delivered via subcutaneous injection instead of an infusion. Given the trouble that phlebotomists have with finding viable veins in my arms, I would much prefer an injection.

Further along in development as a potential CAD treatment is iptacopan, which was recently tested in a small Phase 2 clinical trial with 10 CAD patients in the U.S., Europe, and Asia. Best of all, in my opinion, this is an oral therapy. The fewer the blood sticks, the better.

The third investigational drug I’m watching is ANX1502, which is being developed by Annexon Biosciences. A new tablet formulation of ANX1502 is currently being tested in a proof-of-concept trial.

Fortunately, with the current state of my CAD, my medical team has indicated that I might not need further treatment until 2028. That gives me time to evaluate which potential therapy might be best for me.

I don’t know how much testing on humans that blue goop received, but I am so thankful for the research and development going on in the drug industry that has brought us to our current hopeful state. I can allow myself to hope that better treatments and possibly a cure may be on the horizon. Meanwhile, I’ve gone back to using a wax treatment on my face.

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.