Hi Laura, My brother was still eating OK 2 weeks into rx. However, he wasn't too far past your hubby when he was only taking water by mouth just to keep his swallowing going. He ended up totally dependent on the the PEG, which he detested at first. We now can't believe some people go through treatment without a PEG. Rick may well get to the point where he is only feeding by the PEG tube. Si certainly did, and that was OK, but he did drink as long as he was able - nearly to the end of week 6.

Simon went from 85kg to 65kg and, like everyone else, had some very low times. It's so hard to see through to the end of treatment when you are where the two of you are at the moment, but hang in there. It will probably get worse, but it will get better.

As far as what you can do to get him going, since he was diagnosed in June, I ring Simon every day, some days 2 or 3 times to check he's doing what he should and to give him a bit of a pep talk. His wife has more than enough on her hands keeping it together with 4 little kids, so I am
co-hassler/berater/researcher. I ring and ask the same questions over and over again. How much water have you drunk today? Have you been for a walk? What have you eaten? Why haven't you had more to drink/eat? Are you staying out of the sun? And again, have you drunk enough water? (that one again and again!!) Why have you only had 3 cans down the PEG. etc etc. I do this because I want him to see that there ARE things he can do to empower himself and get a bit of control over the situation rather than feeling utterly helpless.

Does Rick have someone who can do this for him? For his sake as well as to take the intense pressure off you; someone as well as you he can debrief to about the blow by blow of the awful treatment, and to encourage him to do what he needs to do?

I've sent you a PM. Linda