My husband is half way through treatment tomorrow,rads 5 days a week and chemo(cisplaten)one day a week.On Tuesday due to swelling of tongue ,mucos,and very sore mouth which caused him not to be able to eat and he was also havind trouble with his fluid intake the team decided to admit him to hospital for a week.Last night the surgen came to see my husband and said since he was on Cisplatin he would not advise a tube feed as those on cisplatin do not heal well after and there can be some leakagefrom the site in the future.The surgen said he would talk to my husbands team and advise against it.Just off the phone from my husband and he can hardly talk and said his mouth is very sore they gave him morphine last night and a syringe without the needle to apply a cream/fluid which really helps.My husband is also on warfren and has been for a number of years and this my also complecate things..Do you think they will be able to feed him through the nose or will he have to just try and get as much fluid and calories through his mouth.

He has a great team and is in a great hospital and up to this point is very positive and confident but I am afraid that as each new side effect comes it will get him down.

I think this site is great and for the last mounth have been looking at it every day to plan ahead .Because of you he had his hearing Tested , a speech thERAPIST on board .We have ordered the THERAbITE AND have A NEW BED WHERE YOU CAN RAISE THE HEAD SO HE CAN SLEEP BETTER.aLSO CAN YOU TELL ME WHICH MODEL OF WATER PIK (SORRY CANT REMEMBER EXACT NAME) TO buy.

sorry for mess in note but not sure how to incress size of box so will leave as is or wount get this off to you.

As you can see I had Cis but it was administered in the "Big 3 Bag Method". I refused to have a PEG insurted from the beginning and I never heard from anyone about a warning re Cis but that was 6 years ago. You are also the first to mention this in the 6 years that I have been on this site. All that aside I can't believe they haven't considered the nasal tube vs the PEG. I did give in post Rad and let them put in a nasal tube and I had it for appx 2 weeks (all that I needed). It was quick, almost painless and it did the trick for my stubborn butt.

GET THE NASAL TUBE

Thank you,I will tell my Husband I am collecting him at 4 and he will be home for a few hours to help our daughter with maths as she has an exam tomorrow.As regards cis and the feeding tube its seems funny to me as they have most of the patients they are treating on same schedual(5days of rads and one day of cis for 7 weeks)and from the start they said at some stage andy would most likely have to have a FT ,anyway I know more soon,thats great that the tube down the nose works.The name of the gel the nurse gave him is "Instillagel" and it comes prepacked in a syringe which makes it handy for applying inside the mouth.

Seana, my husband has not started chemo yet, that's coming in July, but we're looking ahead. Have you found the bed with the raised head has helped your husband's sleeping? I've read from others that they've slept in recliners, never considered a bed with postions, sounds like it might be helpful

AnaD
We got the templer bed its form america ,there are lots of different types of mattresses but its the bas that is important you want the one which lets you adjust the head and legs like the ones in the hospital we only have it 3 weeks but my hisband thinks it great and I think it will come in mors useful as time goes on.we go the humifider too its only about 25$ as someone mentioned this helps with dry mouth when your sleeping ,I dont know if it helps much but we use it.Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle.Hope these things help .
seana

ANAD,
ITS A TEMPER MATTRESS THE ONES THEY DEVELOPED FOR THE ASTRONOTS AND AS MY HUSBAND SAID HE IS GOING ON AN ADVENTURE AND WONT BE BACK FOR SOME TIME!i THINK HE WILL HAVE NO TROUBLE FITTING BACK INTO HIS WEDDING SUIT.

Seana wrote:

"Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle."

That's very clever - I think they call them camelbacks in the States! I slso like the idea of the Temper mattress with adjustable head and foot positions.

For those on a bugdet, one of those reading pillows with the side arms might also help. My husband used his big, ratty, overstuffed chair fairly often.

Hi Seana. My husband John had daily radiation (5 days a week) and weekly Cisplatin for 7 weeks. My husband had a PEG put in before treatments began and I don't know how he would have survived without it. Radiation keeps building and when treatments are over you still keep "ccoking". I have never heard of a conflict with Cisplatin and a feeding tube. A PEG is just another "tool" in this brutal fight. I bought John a pillow wedge and he would "try" to sleep semi-sitting/laying. Best wishes. Being a caregiver is hard work!

Hi - I too have never heard of any contraindications with cisplatin and a peg... In fact just the opposite... I had no problem with it going in and or coming out.. And no leakage. Or any other issue though I would like to say I couldn't use it because the formulas didn't agree with me. Most drs push for a peg - very surprised to hear your drs. claim. a peg can be priceless. The only negative I've found with them is that if you don't continue to swallow it can lead to swallowing difficulties after treatment is over.

Camelbak is a hydration device that resembles a backpack with a tube for sucking water. I used this when I first started back riding but found it dangerous and useless. Anyway that's different from a water bottle with a straw.