After a super harrowing week filled with cancer drama (in case you missed it you can read all about it here), I took my much-better-but-still-pretty-weak-and-pale husband in for his mandatory weekly clinical trial checkup with his Oncologist yesterday before we headed home to Walla Walla. We were anxious to find out what his recent health issues and hospitalization meant to his participation in the clinical trial and whether or not he would be allowed to continue.
After making sure we knew the current protocol for weaning John off of the steroids that are healing his gut (and this has to be done slowly enough so that the auto-immune colitis the trial drugs caused doesn’t come back, because if it does, it’s much harder to treat), his doctor told us John would be taking a 4 week break from the treatment. Once he’s off the steroids and assuming he’s back to normal with no signs of colitis, he’ll be resuming the trial for the final 4 treatments. He’s been on two different drugs and the one that’s likely responsible for the colitis won’t be continued. If he’s all well, he will get the final four doses of the PD1 inhibitor starting in mid August and continuing every three weeks until he’s done.
Here’s what we learned about the study and how it pertains to John so far:
- It’s working. The lump in his groin has shrunk to almost half the size it was just two weeks ago (from almost 9 cm to just barely 5 cm). Needless to say, we were doing the happy dance over that (well, I was. John’s still pretty tired, but he was dancing on the inside, I promise).
- There are six people in the study at Seattle Cancer Care Alliance and three of them (including John) have had severe colitis attacks brought on by the trial drug requiring hospitalization.
- The three people who’ve gotten sick are having the greatest results as far as decreased cancer symptoms and the three people who haven’t gotten sick are not getting results from the trial. So sick is good.
- Even if he can’t get back into the trial in four weeks, the PD1 inhibitor drug that is still in the trial is on the verge of being approved by the FDA so John could get it in the future if he needed it.
- His doctor told us that it often only takes one dose of these meds to create a positive outcome, and John’s had two doses so far.
So, all in all, even though it was an awful week and we never want him to go through it again, if it’s killing the cancer, it’s worth it. It reminds me of a conversation I had with my brother Mark in the middle of his radiation treatment for stage IV throat cancer a few years ago (which he survived – he’s cancer free as of today). I asked him how he could keep going through the horrific side effects of the head and neck radiation he was getting and he said simply, “This is the treatment for throat cancer and the alternative is sort of final.” Well said.
So, as John’s doctor said on his way out of the room yesterday, “This is the Puritan approach to cancer treatment. The more you suffer, the greater the results.” We’ll take that, especially now that we’re (hopefully) on the other side of the worst of it.