Hi, my husband is in his 5th week of post treatment. He still has severe pain from the sides of his tongue and a sore throat. He has a feed tube and is not eating much because of the pain and the swallowing. The mucous is slowly easing up but he is still spitting up in the evenings. He is still taking 60 mg of morphine a day. Any suggestions appreciated.

I hear ya, mpmma- my husband is 8wks past rads and 3 past chemo. he is still in severe pain for his throat. The Dr. said it just takes time. He hardly eats anything by mouth. thank goodness for his tube.It is so frustrating for him and also for me. I just don't know what else to do. He is on roxicet which helps some and like you the muscus has subsided a bit. He says he feels like a semi-truck hit him. NO energy but they say it will come back!! Hang in there, 'cause what else can we do. LJ

Hi Ladies-

It takes so much time. I didn't eat much until 12 weeks post. Thank God for my PEG. They will come around...with TIME. I think the recovery part was the hardest part. Odd, I know. The fatigue is tough, too. I could've napped all day if my family would've let me. Hang in there....it'll be better soon.

Thanks Jordan, just when you think you are the only one. we hear from someone, 12 wks you say....WE just have to hang on. It seems everyday is a week. Somentimes it is hour to hour how he feels. Today is a crappy day for him. I was hoping for better. but... There is always tomorrow. LJ

mom,

What he is experiencing is normal but he must continue to get his daily rations of water and food into his body.

I didn't have the tube and I can tell you, he doesn't want to short himself in the water and food department as it only makes a bad situation extreme. Oh, and it doesn't take long to get from bad to extreme either, 3, 4 days tops so please stay on top of his daily intake and don't take his word for it because, silly me, I lied to my wife more than once. Not only did I pay the price but I put my wife through living hell.

Marvin is just starting his 10 weeks out. Only in the past few days I have been able to notice little things. He doesnt seem to sleep as much, is drinking mostly water and diet coke by mouth. We still use the tube for main nutrition. I have started to add some protein powder to his tube feedings to get extra protein in him. He tries to eat small things but we are not to sucessfull. He maybe eats 1/4 of cup of things or less but at least it is a start. Hang in there things will get better. Marvin also delt with the thick mucus for a long time during and after treatments but it has finally gotten better. I told him I cant wait until he can eat more and we can go out to eat again. My goal is get him though this and then take a cruise next winter somewhere. Thats if he can eat good again and enjoy the food. He has always wanted to go on a cruise.

I too am having a hard time post Tx. I thought that once rad and chemo was over it would be smooth sailing. Boy, was I wrong. My wife, who is also my hero, kept telling me that it would be tough for awhile after Tx but I wouldnt listen. Well, she was right. I didnt think to read in this forum until today. I see that Im not the only one struggling to heal. I am able to eat by mouth and I thank God for that. The fatigue thing is what gets me the worse. I too could nap all day if my wife would let me but she wont. When she isnt here I have to literally force myself to get out of bed. I thank each of you for your posts because it showed me that I am right on track with the rest here. I do have 1 more surgery scheduled for the 25th of this month to remove the tumor on the left side of my neck and possibly a neck disection.

Hello everyone! My husband is 4 months out and STILL feels crappy some days. He too could sleep all day and has no energy. B12 shots help. He also has no appetite and has to force himself to eat. He gets upset stomachs alot. He has lost a total of 45 pounds and hasn't started to re gain any. We had no idea the recovery would be this hard and this slow. I hope it gets better soon.

Does the protein powder in the tube help??
My wifewas just suggesting that last night.

Amy,

I ate and ate and ate all the wrong fatty foods and I didn't start to gain weight back until my 8th month post. Then when I started to gain I suddenly had to start watching what I ate to aviod gaining to much. Now 10 months out, I'm back to my pre Tx exercise routune and I'm back to being totally health conscience about what I eat.

Billy

I have been mixing protein powder with a can of boost and putting though the tube for Marvin for about 1 month. I feel that this has help him to have a litte more energy and feel better. It has about 210 cal. in it so that also helps on the cal end of things. Make sure to mix well to get all lumps out before putting in the tube. We havent had any problems but they tell me it can get stuck in there if to thick.

Thank you Barb for this info. I have a protein supplement coming and will probably do this also.

Thanks again,
Billy

I had also been given protein powder to add to my congee in every meal for 3 months after treatment. I didn't lose much weight and regained it within six months after treatment. I strongly believe that we are what we eat and I am very conscious about getting the right food. As for the pain along the tongue, I don't want to scare people here but I still have the slight pain along my right side of the tongue even though I am over 5 years in remission. The strange thing is it was the left side of my tongue that was heavily radiated, not the right side.Even my oncologist could not explain why but don't worry, most patients do not suffer such pain as a side effect. I am just the unlucky one! :rolleyes:

Karen