Hi,
After another visit with our RO today, both my husband and I feel upset and
somewhat hopeless.

Two weeks ago this Dr. told Gordon that if his weight went down too
far, treatment might have to be discontinued. We thought at the time
that the Dr. was trying to scare him into eating, but it turns out that Gordon had a reaction to the dexamesathone and went manic for a day, then crashed
for a couple of days, during which time he had an aversion to food, so the "scare tactics" weren't really necessary.

Today when we went in, he said he'd never seen anyone have the
difficulty with treatment this early as Gordon is having, and started
to go into the whole "we'll have to discontinue treatment if you
can't take it" routine again. I pointed out that he had already said this to us once before. He then said sometimes the chemo has to be discontinued.

I mentioned that Gordon had a reaction to the dex. and all this Dr.
would say is that sometimes it intensifies what's already there in the personality, and that sometimes elderly patients have a psychotic episode
but not someone in our age group (late 50's).

The Dr. said that usually people don't start Tylenol 3 with codeine
until week 3 and I pointed out that we *are* in week 3. And Gordon
is managing with extra-strength Tylenol at the moment.

The Dr. also said he doesn't like to use a feeding tube because patients
get dependant on them and then can never eat again!

Gordon has now had 13 radiation treatments and 1 chemo. His tongue
is sore and he has a couple of canker sores on the tip of his tongue.
He also has a sore spot at the back of his throat and the inside of
his cheeks are sore. He finds drinking water first thing in the morning
difficult. Is this unusual for someone part way into week 3? Is he
really that unusual for this week of treatment?

We are not getting any encouragement or support from this guy.
You'd think his approach would be more along the lines of -
OK, we'll try this and see how you do, and then if we need
to, we'll try this...you get the idea? But no, he jumps right
into the worst case scenario - treatment could be discontinued
and then supposedly you'll die.

Other staff, such as the nutritionist, nurses and counsellor are
more encouraging than this, and say it's going to be tough
but we'll get through it.

I don't know what to think and wonder if what the Dr. is
seeing is Gordon's psychological difficulties with the treatment,
rather than where is is physiologically right now.

It's not great to come home feeling like this, when the whole
treatment is such an enormous challenge in every way to
begin with!

Thanks for listening...Anne