Hi Kerry --

My husband Barry is almost (but not quite) back to normal -- and some things will never get completely back to normal, which is to be expected -- you just hope they get to the point where they are manageable and you can live with them. It is very importsant to have a positive "this will not defeat me" attitute to get through the treatment and to deal with the side-effects, and all the work that has to go into getting back towards normalcy. Sometimes it seems to be two steps forward and two (or even three) back -- until one day it is only one step back, and then the end of the tunnel is in sight!

The side effects which remain include some dry mouth -- Barry took amifostine and also had a parotid-sparing radiation plan so has quite good salivary function considering he had bilateral radiation -- does not have to sip water, for example -- but things which he uses now include Evoxac 3x a day and he chews XyliMax dental gum a lot, finds the chewing action stmulates natural saliva production better than anything else (and he's tried Numoisyn and all the Oral Balance products). He uses a squirt of Oral Balance liquid before bed, however, as he tends to mouth-breathe a bit. His salivary function is improving over time and his ENT thinks he will probably be able to cut back on the Evoxac in a few months if things stay on track.

Eating -- Barry ate all the way through treatment and never used his PEG, in fact it failed and fell out in the last week. Towards the end of treatment he was eating mostly things like scrambled eggs, pureed soups, noodles with mild sauce, smoothies, Boost etc. -- and that slowly and carefully, with lots of water. He was eating maybe 1700-1800 calories a day, not enough to regain weight but he didn't lose any more. Within 6 weeks (that is, by Thanksgiving) he could eat soft regular foods-- we had broiled salmon and mashed potatoes for dinner. In mid-January we went to Mexico birdwatching and he could eat everything except the spicy foods and very dry things like taco chips. By this time he was eating about 2500 calories a day (or more) and that's when he started to regain weight. (He lost about 20 pounds, of which 8 was due to a post-treatment infection -- he's regained about 6-7 of these. His BMI is within normal range for his height.) He tries to ge in 3 snacks a day plus meals, with an eye towards high-calorie-density foods and not too many "empty" calories.

Barry can now eat most everything, however all but the mildest spicy foods still irritate his throat so you can see it takes a long time for this to heal. However it is happening, every week is better -- he can now handle mild Thai soups and Chinese whereas a month ago they were off-limits. The redued saliva means that some sticky foods are harder to handle and muck up his teeth so that's where water during meals is important, also immediate post-eating tooth care (or chewing the dental gum)

He had a barium swallow test in November (about 6 weeks' out) and this showed weakened swallowing muscles (despite the fact he ate throughout) and that his epiglottis failed to completely close -- due in part to residual inflammation -- reason he got an aspiration pneumonia right at end of radiation. The therapist gave him a series of exercises to do and he does them religiously, much improvement noted over time, recent endoscopic exams showed things looking much better and he now can eat at the same speed as the rest of us, though he is still careful about chewing and swallowing. He used a TheraBite device from the begining to avoid trismus and continues to use it a few times a day as this can creep up on you post-treatment.

Barry maintained his energy pretty well -- he took 500 mg l-carnitine liquid every day through treatment and beyond -- (several studies support this for "cancer fatigue") -- with doctors' OK of course. In Mexico (3 1/2 months from end of treatment) he was able to do all the long mountain hikes and he has never looked back. He does light weight exercises almost every day, as he lost a lot of upper body strength during treatment .

He did not take Taxol (which you husband is getting) due to concerns that it might exacerbate the "benign essential tremor" he has in his hands and lower arms (hereditary, his dad had it) so Barry only had the carbo and this mainly affected his blood counts, which took some months to rebound to normal range. The hospital checks these, as well as his thyroid function, with blood draws about every 3 months.

His hearing was checked post-treatment and no significant change was noted, ditto they gave him an eye exam for any changes there. (None).

A friend from Australia brought him some benzydamine (Difflam) lozenges a couple months ago and these really helps reduce the mouth/throat inflammation. OTC in Aus and UK, not available here -- supposedly best stuff against mucositis but FDA is still meditating on it, I guess. Barry's went off to England yesterday to see his mum so he will get some more, as he still obviously still has some irritation in his throat.

This is a long post and I hope that others on the forum will forgive it -- but it seemed a good time to answer Kerry's questions...

Good luck, Gail