Medical Adventures #15

For Mr. K, who never misses a beat.

May 2025: Will RunningBarb Ever Run Again?

A little more than a year after I finished chemotherapy I decided it was time to try to run again. It’s funny that I still had the name RunningBarb when I hadn’t been able to run for so long. Of course, I’m the one who gave me the name, so I could do whatever I want with it. I did think about changing it. But I considered it to be a little joke on myself. A taunt, kind of, from the universe: “RunningBarb, who can’t even run!” Reminding me that you can’t always get what you want. 

I had been doing a walk/slow run combination for a while, following the course I used to take when I ran all the time. One night while lying in bed I thought RunningBarb, if you want to be worthy of your name you need to put on your big girl running shorts and actually run the whole way. I don’t mind if you are super slow, but you have to do something that looks like running for the whole five and a quarter miles.

So, I put on those shorts and set out. Near the end I had a big chant going on in my head: Youcandoit!Youcandoit!Youcandoit! 

And I did.

After that I mostly ran twice a week. I also continued building my biking. From there things just kept getting better. More visits to The Darlings, more long trips, like to Big Bend National Park in southwest Texas, with its amazing desert hikes. (Sure is far!) 

In the amyloidosis healing world, though, there were a few disappointments. The promising drug, birtamimab, which was being developed to remove existing fibrils, did not reach its “endpoint” in the research trials. The main goal was to reduce mortality over a certain time frame, that is, keep you from dying from the disease. The study showed it did not do that to the extent necessary to move it forward. The funny thing is, that doesn’t mean the drug didn’t do anything. It may have removed fibrils and helped people improve physically. But drug trials need a more clear and quantifiable outcome than that. 

The other drug in trials, anselamimab, which also was being designed to removed fibrils, also missed its endpoint of reducing mortality. There was a caveat that it helped a subgroup of people live longer and make fewer hospital visits. But the specifics of that are not yet available.

This means that the only two drugs that I know of to eliminate the fibrils are out of the picture. There is nothing available or in the pipeline to get rid of them.* Our bodies are on their own. 

*I have since learned that there are several other drugs in the works, such as zamubafusp alfa, whose name I like because it is quite similar to the strong password I use for Myspace. 

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