My husband Tim finished 36 IMRT treatments on August 29 and 3 chemo (2 Cisplatin/5FU and 1 Cisplatin) on Sept 16. He had his tonsils removed as a kid, but the ENT told us they didn't get it all and it has been growing back inward all this time. He developed a severe case of mucositis 2 weeks into treatment on July 20 and was hospitalized for a week and again after the second round of chemo. (Good ol' 5FU.) He was put on a feeding tube on July 20 - and is still using one. He can't swallow at all. I realize it is different for everyone, but can those of you who were on a feeding tube tell me how long you were on it after treatment? He is diabetic and takes 10 cans of Glucerna a day. He swishes with soda/salt mixture and Biotene mouthwash. Any other ideas?
Sheila

Hello Sheila

Sorry your husband has been so ill. I had tonsil cancer also, even though my tonsils were removed when I was 4 yrs old. Apparently my primary tumour was on a tonsil remnant.

I can't help with the feeding tube info as I didn't have one but wish your husband the best for his recovery - it is slow because the treatment is so aggressive.

Love from Helen

Hi Sheila,

I also had horrible mucositis. As you say, good old 5FU (we all know what FU stands for). I stopped treatment December 6th. I wasn't able to have the tube removed until February 1st. I was able to start eating the last week in January, had my neck cut on Jan 31 and the took the tube out the next day. I know it is hard, but he must just bear with it. I took 9 bottles of boost a day. I also found the Walmart nrand to be good for protien and calories. hang in there, the worst is over with.

Steve

Sheila,
It's not unusual for people to remain on the feeding tube for quite awhile after treatment. My husband relied on his for 5 months after treatment ended.

Things will get better.

Anita

Hello Shiela,

I was on the feeding tube for seven months. I was inputting 8 cans of Jevity per day. I flushed the tube after each feeding with alot of water. You don't want the tube to clog up, plus you need the water. You don't want him to become dehydrated. I used a syringe to input the Jevity. One rule of thumb is one month recovery for each week of radiation. Measure his progress in weeks not days.
Things will get better, It just takes time.

Have his doctor write a script for the Jevity or whatever brand you use. Your insurance company should pay for all the supplies also. They even delivered all I needed free of charge. They may balk but if it's the only way he can eat they should pay.

Wishing you the best, Danny Boy