Chasing My Cure by David Fajgenbaum

Author:David Fajgenbaum
Language: eng
Format: epub
Publisher: Random House Publishing Group
Published: 2019-09-09T16:00:00+00:00

The only drug in development for my disease wasn’t working, and I had no other options. This also would mean that the medical community was wrong: IL-6 was not the problem for all patients with iMCD, so siltuximab would not help everyone with my disease. (I rated this as likely.)

These two possibilities were quickly whittled down to one: Detailed hospital auditing records confirmed that I had received siltuximab at the appropriate dose for the previous fifteen months. Everything had gone as it should have, and I had gotten very sick anyway.

We were back to square one. The only thing the medical community “knew” about iMCD was not correct for me. Interleukin 6 was not the problem for everyone with iMCD. Siltuximab wouldn’t work for everyone, including me.

The siltuximab that I had been on for the previous year and the single dose of chemotherapy I had received a few days before in Raleigh were clearly not slowing things down, so Dr. van Rhee decided to take the “shock and awe” approach again. I was immediately started on the same combination of seven chemotherapies as before. Like before, the cocktail targeted my immune cells and other rapidly dividing cells like my bone marrow, hair, and intestines.

I needed answers. I may or may not have been approaching death for the fourth time. As the chemo cocktail dripped into my arm through the IV pole at my side, I asked Dr. van Rhee everything I had been obsessing over since I started to feel sick again.

“What causes this to happen?”

“No one knows.”

“Which type of immune cell is responsible for initiating this?”

“No one knows.”

Why not? I wanted to ask.

And why me?

I swallowed those final questions, but a hospital room is never, ever silent, even in the dead of night, or even when a conversation grinds to a halt and the participants are left to quietly pick at the implications of what’s been said, and what’s been impossible to say.

It occurred to me, between the periodic beeps from my IV pole, that Dr. van Rhee was not saying “I don’t know” to my queries about my illness. He might have said “I’m not sure, let me look that up…” and swiveled over to his computer to plug in the symptoms and dial up some answers. But he didn’t say that. He said “No one knows.”

“Are there any other drugs in development or clinical trials?”

Dr. van Rhee was unfailingly calm and caring when he responded to my most important question. “No, not at the moment.”

“Are there any planned?”

“Not that I’m aware of.”

Dr. van Rhee was the undisputed worldwide expert on Castleman disease, and he didn’t know what initiated the disease or what caused it. Or how to prevent relapses in patients for whom the only experimental treatment in development didn’t work. That meant that no one knew. There were no more appeals. There was no higher bench. He was not flattering himself by speaking on behalf of the world’s knowledge of my condition. He was that knowledge.

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