Dr. David Fajgenbaum

So to start, I spent a lot of time just sort of researching online.

Like, are there any case reports of doctors trying different things?

Like it happened in Japan.

There was a doctor that was trying these different drugs.

And so

Then when I relapsed and had my fifth deadly flare, I actually started trying those drugs that had been used in other parts of the world.

I asked my doctors, you know, would you prescribe this drug?

It had been used in Japan.

And we tried it and it didn't work at all.

And I said, well, can you try this other drug?

It was used for a disease like Castleman's.

And that drug kind of worked, but I just relapsed right through it.

I ended up back in the ICU.

And I felt so disappointed because I had spent that year like thinking about what could be tried and we tried these two drugs.

But the third thing I had done was that I started storing my blood samples every couple of weeks in the freezer at a lab at UPenn because my belief was if I relapse, and I thought I probably would, that I needed to get those blood samples so I could figure out what was going wrong so that way I could target it.

I needed to get like basically some evidence to figure out what to go after.

And so thankfully I survived that fifth episode again, again with the seven chemotherapies.

And when I got out of the hospital, and actually even while I was still in the hospital, I turned to my sisters and to Caitlin and it was like, let's get all the samples we can.

All those samples that are in freezers, the lymph nodes that are here and there, get them all to Philly.

I'm basically gonna go to the lab and I'm not gonna leave until I figure something out.