It’s been a discouraging week here.
A little over a week ago, Jay went off the the one drug that helped his appetite but blunted him mentally, and while his cognitive and mental focus have improved dramatically, his appetite has disappeared. He is now completely on a liquid diet, save for 8 grapes a day. I’d estimate that this shift has reduced his daily caloric intake to about 500 calories.
We saw his palliative care doctor at the end of last week and there was some conversation with the NIH doctors as well. The NIH docs recommended moving up the date of Jay’s next scans so that they can tell sooner whether the treatment is having any effect. The reason for this is that the best drugs to help him with the appetite and nausea and cough issues contain steroids, something he’s not allowed to have on the trial.
So if we discover that the NIH treatment is not being effective, then we can move on to these steroid-based drugs and see if they help.
If the NIH treatment turns out to be effective, it’s not clear to me what the next steps are for alleviating Jay’s misery.
We also saw Jay’s home (OHSU) oncologist today as a follow-up from the palliative care doctor visit, and got a prescription for Haldol (recommended by the palliative care doc) to add to Jay’s repertoire of nausea inhibitors.
Jay’s CAT scan also got moved up to this Thursday from next Monday. The MRI is still next Monday.
We spent a couple of hours today at OHSU while Jay got some IV hydration. I asked him if it made him feel any better, and he said not really, but he certainly looked better and was more mobile on the way home.
We’re looking into home health aides, to give me a much-needed break.
So that’s the lay of the land as it stands now.
I don’t know how long it will take us to hear back from the NIH docs once the scans are done, but rest assured I’ll let everyone know as soon as we know anything.
Thanks for all your good thoughts – they are very much appreciated.