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Alas, when someone goes quiet, it’s often not good news, and that is the case in our world.

Bill was trying to get onto the dual checkpoint inhibitor trial at NIH, but was delayed by the need to insert the rod in his tumor-weakened femur. He kept complaining about pain after the surgery, and it was determined that in all of two weeks post-op, he had grown a new 2 cm lesion in that femur. There was then a week of radiation on the leg, but CT scans at the end of that week–two months since he ended the FGFR2 trial–showed considerable expansion of his disease, in terms of larger liver tumors and new suspicious spots in his lungs and bowel. And his bilirubin had finally risen out of the normal range.

We were getting ready to start him on Folfox, but he ended up hospitalized for four nights last week because his pain was not getting managed. They eventually did a nerve block to beat back the leg pain and a steroid injection for his lower back pain.

He came home Saturday, and while the pain interventions actually seem to have worked to improve if not erase his pain, we are facing the reality that his liver is failing. Bouts of confusion are becoming more frequent, he’s sleeping more, and we are now focused on keeping him comfortable, and hospice has been called in.

I’m sad beyond measure about what has happened to the man who means everything to me, but I’m also sad that his version of this cancer just was not interested in being batted down. and that the options and possibilities that I learned about through this wonderful community ended up not yet being able to conquer Bill’s disease.

Thank you to everyone for the advice and the support along the way.

Unfortunately we’ve had a bit of a speed bump–the radiation on DH’s neck went fine, and the pain lessened a good bit quickly, but in the meantime the pain in his leg just above his knee started increasing markedly. They hadn’t imaged it since the summer, and when they did they found a sizeable lesion, with a stress fracture already having occurred and the bone itself looking very weakened. Less than 24 hours later, he was in surgery having a rod implanted in his femur.

It appears the tumor was mostly necrotic (it took three separate biopsies from three samples to find any easily identified cancer cells, which happened because the orthopedic oncologic surgeon didn’t want to proceed without being sure it wasn’t a separate primary bone cancer). The doctor feels the pain was less from a fast-growing tumor and more from the bone just being extremely fatigued from holding his weight while weakened. We dodged quite a bullet–if it had broken, it would have been a much worse surgery and recovery. He’ll need a short course of radiation on the leg in a few weeks.

This does put us in a bit of a bind about next steps–he’s already gone three-plus weeks without treatment, washing out from the ARQ 087 trial in anticipation of joining the dual-checkpoint-inhibitor trial at NIH. But NIH says he will need now four weeks from surgery before he could start the trial, which would put him at seven weeks without any sort of systemic treatment. So then the other option would be FOLFOX, which could also take a lot out of him and leave him unable to qualify for trials down the road.

We’ll have some decisions to make, but right now we’re just concentrating on letting his leg heal. At least the doctor says that his pain should definitely be improved, even before radiation, once the post-op pain lessens.

Hi Matt! I have read your posts during these past months, and it is so great to see you are doing so well! Your story gives such hope. (as does Melinda’s, and Colleen Wong’s mother’s, and and and…!)

We are now talking to NIH, and they see a couple of immuno trials that Bill might qualify for, so we are starting the process there. (So lucky to live in the DC area, with Hopkins and Georgetown and NIH all within range.)

These would presumably be able to happen faster than the Georgetown Keytruda one that is still a few months away, though we know that things don’t always move at lightning speed with NIH.

Fingers crossed.