John has just signed up for a Phase 2 trial of the Selective Inhibitor of Nuclear Export (KPT-330). The study drug works by trapping the "tumor suppressing proteins" within the cell and so causing the cancer cells to die or stop growing. It is a kind of targeted therapy. The team is aiming for John to start on April 20.

In the meantime, John had his PEG removed yesterday (hooray!) after two and a half years. It was a day that, had I been asked six months ago, I would have say would never come. So far, John has had six dilatations done on his esophagus. He is eating everything by mouth and, with the advice and support from a dietitian, is maintaining his weight. At his swallowing test two months ago, the SLP was very impressed with the fact that John had kept his swallowing muscles working by doing his swallowing exercises daily even though he was tube-dependent. We have been speaking to all the medical people we know about the new procedure and the good work that the interventional radiologist has done. I actually went and told John's RO that he, of all people, really needed to know about the procedure and to encourage patients not to just give up and go away.

I think what bothers me the most in all this is the fact that doctors keep telling me that not very many people lose the ability to swallow that way John has. That has not been what I have heard on this forum and from other patients I have met at the hospital. It appears to me that more often than not, doctors tell patients that nothing can be done and the patients just go away and live with a PEG for life. At the very beginning of our ordeal, at the time when it was still possible to get a wire down, a surgical oncologist flatly refused to even consider giving John a dilatation because he said the esophagus would inevitably close up again, so he wasn't going to spend the time doing multiple dilatations.

Since I spoke to the RO, I have heard that they have referred a couple more patients to the interventional radiologist, so I hope the word is spreading.

I will update when the trial begins and let you know how we are getting on. Thanks for letting me vent a bit.