Hi
My Husband Brian was diagnosed with stage 4 tongue cancer in June of this year. He finished his radiation treatment August 11th. He had 2 chemos not sure if he will get more. He lost a total of 30pounds before he started radiation, from the cancer and the fact the tumor was so large that he just couldn' eat from the pain. The tongue is better and also the nodes, but there is so much swelling and saliva from the radiation it's still too early to say if they got it all. He went to the drs today because the ulcers in his mouth are so painful and he wants to eat, He can eat tapioca, milk and drinks boost, he was able to eat more 2 weeks ago but it must have irritated the ulcers so now he is just sticking to the tapioca and boost and feeds himself with the feeding tube.Very frustrated. He is on the pain patch,and another pain med and also taking Lidocaine w/ benadryl, and another lidocaine that he puts on with a swab. It helps numb it for a while. He is getting a CT of his neck next week as the dr says there alot of edema there and he's been complaining of neck pain. The good news is he gained he is 138 and the ulcers look better.
Look forward to hearing from anyone with the same issues
Thanks

B,

I just wanted to say Hi. My husband has stage IV scc, primary r. tonsil. He goes for second surgery tomorrow, then rad and maybe chemo. I can't help much with your questions, but I can tell you that you will find a tremendous amount of support here on this site. Hang in there, one of the folks who has been around will answer your questions. Best wishes and keep coming back.

HI B,

All I can say is hang in there. Looks like you are finished with the worst of the treatment. Not the owrst of the results. It takes a while to heal. I'm two year out and still feel I'm recovering. However, I play golf, work, etc. I just don't hav ethe same energy I did, but it is coming back.

The eating will come. HE IS VERY LUCKY TO BE ABLE TO EAT AT ALL. I 0lived on my tube for 4 months.

The neck pain is normal, I think. THe radiation does and surgery do a lot of damage to the muscular tissue. It will come back though. I work out often. It seems to help.

Steve

Hi
I Had tongue cancer Feb 2005 the right side of my neck swelled large lump, I was in SC at the time was not due back to Minnesota till april.
Went to Dr in SC but did nothing till got back to Minnesota in May 18 2005. Sqemas Cell that spread to the neck which was the swelling. Had surgery Removed everything from the right side of my neck, the tumor in the base of my tongue was small, let me heal then started chemos 33 rounds of radiation, I lost around 100 lbs should of used the food tube, anyway gain my weight back lost some use of my right arm, have had good check ups, the one thing about this now anytime I get sick the first thing I think of is cancer, but it is getting better.
Good luck Chris

B, We all know the problems with getting enough fluids and calories during this difficult. I have posted this elsewhere but I recently found a Carnation Instant Breakfast VHC product that has a whopping 560 cals in the same 8 ozs that Boost and Ensure Plus only have 350. My problem was more naseau than pain so by being able to swallow far less for the same cals was very helpful. If you want to get it call your pharmavy, like CVS or Walgreens, and they can get it within a day or 2. Stress the VHC because Carnation has many similar products.

Thanks for the info, We will give CVS a try although when we asked them to order prosure for us they said there wasn't enough call for it. My husband has lost most of the muscle in his body along with the weight, we heard that prosure was good for rebuilding muscle for those with cancer.
His nurse discouraged us from getting it because she said he wasn't losing weight from the cancer anymore it is because of lack of nutrition. Does the Carnation Instant Breakfast have alot of protein for muscle buildup. That has caused alot of his weakness.
Thanks

B, my John had lost weight and muscle both over the last year- his skin sagged everywhere- just skin and bones. I finally talked him into adding weight gain powders to his feeding tube nutrition. We have been using Naturade products -sold at Wild Oats stores, GNC, etc. His base nutrition is 2CALHN- 475 cals. per 8 ozs and he augments with Ovaltine, Welches Concord grape juice, Ice cream flavorings and the Naturade powders-all thru his pegtube. We are going to try some Carnation VHC for variety if we can get it. Getting alot of good calories and protiene is a struggle. John has gained almost 20 lbs.[up from 117 lbs.] in the last 2 1\2 months, but the muscle will only come back with some exercise. We don't have a cancer nutrition expert here, so we've been doing alot of experimentation. One thing I will say-don't let him eat foods that do not have lots of "good" calories because they just fill his stomach without contributing to what his body needs. John tried lots of soups, but we could not get the calorie content up enough and he would be too full to eat anything else. Everything needs to be calorie and vitamin packed-with fiber being important too. [Benefiber is a good powder suppliment to help with regularity] It is a real challange-good luck. Amy

B and Jam, try the VHC. My pharmavy orders 1 case at a time just for me. It's no big deal for them and they make profit as well. B if yopu have any nutrician type questions post them. I have one at Moffitt that I can ask anything anytime and would be happy to oass any questions along.