Hubby has stage 4

HinJos

 Welcome  to our group  sorry you’ve found yourself in her on behalf  of your hubby. I am 3,5 years post radiotherapy for tonsil,cancer also had 2 of a planned 3 chemo sessions. Do you know is your hubby h p v postive ? I am asking that as h p v tumours respond very well to radiotherapy the chemo is a belt and braces to the radiotherapy if he has reacted so badly to the chemo it could be worth asking does he need the chemo. I had 2 10 hour chemo session and in conjunction with my oncologist we took decision not to have the 3 rd as I had been very lucky and had no debilitating side effects. I was told more than 2/3 rd of patients don’t have all the sessions. Of course if he isn’t h p v positive that’s a different matter.He can ask for his medication to be changed prior to chemotherapy. 
Insome days struggled ri get 1000 calories in via my n g tube, my tummy had shrunk so I used to feed little and often p, if he can still swallow and you've got  the high calorie drinks they can be diluted with water   or milk and sometimes trying to swallow  they are too thick. Also his he on adequate pain relieve ? By week 3  I personally was on 6x30 g co codomol and up to 40  mil oramorph a day.Yiu haven’t said how  is he is doing mouth wise ? Ulcers thrush etc. I used to spend 45 mins each time on oral care .It’s a hard treatment but with excellent resukts. My blog below has links to other sites it may help.

Any questions  just ask 

Hazel 

Hi Jos and welcome. Is your husband having radiotherapy at the same time? I ask because if he is he has contact with his medical team daily and he can tell them exactly what's happening. Please do contact his CNS to explain how he is so that they are well forwarned that  his medication needs tweaking. I was fed via nasogastric tube for a while and I couldn't manage a large bolus of liquid food either. The answer was to be drip fed by pump overnight. That way my tummy could take the food slowly. It's something you could bring up with his team.

All you can do is support him as best you can but please look after yourself too.

Do let us know how you get on and best wishes

Hi

No he’s not hpv positive. The consultant reduced his chemo to only 2 drugs n the hope it wouldn’t hit him as hard which seems to have worked. He now can’t swallow anything and everything is going through his rig line. We’ve started to do 3/4 of his feed through the night and then give him a couple of hours break and he has the rest, which seems to be working.

Jo

Hi

No he hasn’t started radiotherapy yet. The plan is for 1 week of radiotherapy then a 2 week break then another 1 week of palliative radiotherapy. It has now moved down to involve one of his tonsils. He asked for a prognosis and was told 1 year maybe a bit longer.

Thanks

Jo

Oh jos. I’m so sorry. I wrongly presumed your husband had just started on the chemo radiation route. I can just repeat and echo what’s been said. His CNS is the one to approach and tell them how much trouble he is in. Some chemo drugs really mess with the mouth too, let alone having to deal with the cancer. Ask maybe about feeding g by pump through his RIG? That way he can be drip fed over night with food which is less likely to upset him. 
I hope some of this helps.