Hi Sue

Alex had the same regimen (see signature). He began to suffer around day 5 with thick saliva, inability to cough it up and nausea. He could not get out of bed. The good news is that after a week of wishing he was dead, he improved to "almost normal". By the time the next cycle was due, he was good to go and almost welcomed the experience as he felt he was doing something active against the tumour.

I cringe when I hear about the health care professionals who make comments as yours did saying your husbands reaction is extreme because this can be unsettling for both the partner and the patient who may interpret this as some sort of failure or weakness. I would disagree with the nurse and say that there are enough people who suffer as your husband has to make it "not unusual" rather than "extreme". The nurse would have been better off looking for practical solutions rather than passing judgement. I think, like others, that the state of one's nutrition has a large impact, and if your husband was underweight or ill from the cancer at diagnosis, he may well be starting behind the eight ball in the first place, putting him towards the higher end of the misery scale. Remember too, that cisplatin is a nasty drug that causes all of manner of grief - adding Taxotere and 5FU just takes it to a whole new level. BUT it also improves your husband's chances of survival AND you will get through it - most do and Alex is just one testament to that.

In Alex's case, he was underweight (60kg or 132lbs) at diagnosis and it was much more than sore throat! It was nausea (and vomiting if he forced himself), loss of appetite, bad taste and pain. Eventually, he was hospitalised when his weight dropped to 48kgs (105lbs) after the second round and the doctors threatened to discontinue treatment if he couldn't gain weight.

The best thing that happened to Alex was a pump. When he was hospitalised they put him on a pump and taught him how to use it. This was a slow drip feed that gave him 2000 calories overnight via a pump and is attached to a PEG. This got around the nausea and vomiting which happened every time he tried to either eat and swallow or use a syringe to deliver liquid nutrition through his PEG.

We also found that changing brands of liquid formula made a difference. When Alex went onto the pump, he was changed to Nutrison and never looked back. Unfortunately, in Australia, this formulation is more expensive than the stuff they originally started him on (TwoCal) so when an offer was made by one of my work colleagues to supply TwoCal that could be administered by pump we jumped at the chance. Alex's vomiting returned.

We learned that it wasn't only slowing down the feeds that made a difference, but the brand as well.

By now, you will have experienced a second round of chemo? And hopefully will have received assistance with your husbands nutrition? A PEG maybe? Please let us know how you are faring.

Karen
PS Alex is now two and a half years beyond the end of treatment, is back at work and doing very well. He is still underweight and relies on liquid nutrition (not TwoCal which still makes him sick) Goal is 75kgs (165lbs) which on his frame of 6'1" is still "bean pole" territory.