Wednesday, August 26, 2015

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.

Tuesday, August 26, 2014

Year +3

It's been a while since the last update but, again, there hasn't been much to say. I almost made it through my ~6 month trip abroad without getting sick, but I ended up with a cold at the very end of it, most likely due to too much exercise and not nearly enough rest for a week straight. If I remember correctly, my last cold happened over a year before that, and I've been far from a germaphobe.

I had my 3 year followup at Northwestern in the beginning of August. MRI and colonoscopy showed no sign of Crohn's. Biopsies and blood work were normal. Dr. Burt ordered another chimerism test. He said he has had patients who didn't show any of the donor's immune system until later on, so he wanted to check it again. The results for that should be back within a few weeks. I'll post another update if anything is different, but I think the chances are low for the chimerism to change at this point, so I'm not expecting it to. My reflux stays in check as long as I remember to take Aciphex, and I'm still symptom free and medication free as far as Crohn's is concerned. I'll post another update around the end of the year if nothing noteworthy happens before then.

Wednesday, January 15, 2014

+2 Years, 4 Months, 19 Days

No real news on the medical side of things. Still doing very well - no symptoms except for reflux when I forget to take my medication.

Wednesday, November 27, 2013

+2 Years, 3 Months, 1 Day

I didn't mean to go so long without posting an update, but you can continue taking no news as good news. Counting the days is a bit too annoying now, but it has actually been 27 months as of yesterday since day 0. I celebrated my second "birthday" 3 months ago, and things are continuing to go well. I'm still symptom free and medication free. I have been having a bit more of an issue with acid reflux when I'm more active (weightlifting, specifically) but taking Aciphex twice on days when I need it seems to be doing the trick. I haven't been sick since my last cold in May, aside from food poisoning/a short GI bug. Hopefully there's not much to report before my next followup in the summer, but I'll try to post an update in January.

Some other exciting news is that I will be studying abroad at Uppsala University in Sweden for the spring semester. I have kept my blog posts pretty dry and to the point purposely so the stem cell transplant can speak for itself, so I intend to start another blog that will have some more substance for those interested in keeping up with my adventures, which I will link to here when the time comes.

Thursday, June 20, 2013

Day +664, 2 Year Followup

It's been a while since my last post but that's because there hasn't been much to say. Since then, I came down with the flu in March, for which I got Tamiflu, but that passed without any issues. I also had a sinus infection in May, which went away a bit more quickly than previous infections and without an antibiotic. It would appear now that I'm lactose intolerant since milk hasn't been sitting well with my stomach but I feel fine when I don't drink it. Still no Crohn's issues.

I had my followup at Northwestern last week. I had bloodwork, an MRI, and a colonoscopy for testing, and saw the GI and Dr. Burt. All of the tests showed no signs of active Crohn's. Dr. Burt said that the chimerism may not actually be an overwhelmingly important piece to staying Crohn's-free long term, which may be good news for me since I didn't inherit any of my donors' immune systems. They've had varying degrees of success with transplants since mine, it seems, but I don't know much beyond that. They just need more patients to collect more data to figure it all out.

I won't have another followup until next summer, but I'll try to remember to periodically post updates even if not much has happened.

Sunday, February 10, 2013

Day +534

I got over the rest of the cold reasonably quickly. As expected, the chimerism results came back 100% my own cells. The fertility testing came back completely normally. I misunderstood how the immunization titer testing would be handled. They actually didn't test for it at my followup, so I'll see my PCP at some point when I'm not at school and get that done. Dr. Burt didn't say it was terribly pressing and that I need to take care of it right away so I'll wait until it's more convenient. Other than that, I'm still feeling great. No symptoms whatsoever.

Monday, January 14, 2013

Day +507, 1 Year Followup

I managed to get a cold a few days before going to Chicago, but it hasn't been that bad. I'm still not quite over it, but I think I will be soon. I saw my GI, Dr. Yun, on Monday. It was pretty uneventful - just a normal assessment. I'm going to take Aciphex every other day now and see if that's enough to take care of the reflux. I'm still not on any Crohn's medications. I got my blood drawn afterwards, including for one last chimerism test, which was just part of the protocol for the 1 year followup. No expectation for it to have changed since last time.

I had a colonoscopy on Wednesday. Everything went very well for that. There were no signs of active Crohn's Disease, just leftover scarring and pseudopolyps. Dr. Yun took biopsies all throughout and those showed no signs of active Crohn's, as well.

I had an MR enterography (same process as last time) and then saw Dr. Burt on Friday. When I met with Dr. Burt, he had the results. Again, no signs of active Crohn's Disease. Regarding the blood work results, everything was fine. My sedimentation rate and C-reactive protein (inflammatory markers) were barely above normal. That is most likely due to my cold, though, given the rest of the tests showing no issues.

Dr. Burt was, of course, extremely happy with how I am doing. So pleased that he won't let me have another colonoscopy unless I start to have symptoms. The results regarding whether or not I'll need my immunizations again will take a while longer to come back, as will the chimerism test. I'll post another update about that when the time comes. After that, there isn't much else to be concerned with other than how long I stay Crohn's-free.