Year +4

No update since last year because there hasn't really been anything to say. I'm still symptom free and Crohn's medication free. I had my 4 year followup at Northwestern a few weeks ago and, as expected, all of my tests (blood work, MRI, colonoscopy and biopsies) came back fine.

I asked Dr. Burt again about his thoughts on remaining Crohn's free long-term. He previously told me he expected that I would remain Crohn's free for "a good number of years," which wasn't particularly quantifiable. With the data he's collected and the transplants he's done since, he said he doesn't think I'll relapse. That's obviously not a guarantee given how little data there is, but I don't think he would have changed his prediction without good reasons. He was very hesitant to use the word "cure" in the past and, to me, it's semantics. Not relapsing and being cured are effectively the same as far as my quality of life is concerned.

Overall, the transplants using umbilical cord blood weren't doing exactly what Dr. Burt thought they would, so he is revising the trial protocol to achieve better results in terms of lasting remission with future transplants. He now thinks the key to long lasting remission is the chemotherapy regimen, so he's proceeding with trials using sibling donors and autologous stem cells because they are safer to use. There may also be a characteristic of the umbilical cord blood stem cells that is important in long-term remission, but not enough is known yet for him to be sure. That sounds like what he will investigate if just the chemotherapy protocol doesn't do the trick. My chemotherapy protocol was almost identical to the one he is going with for the new trials, and I received umbilical cord blood stem cells, so that, from my understanding, is why he thinks I won't relapse. Just have to wait and see what the new data says.

I'll have one more followup next year that technically counts for the current trial since the primary concerns are safety and efficacy. Beyond that, I'll happily continue to followup if the logistics are feasible.