Hello everyone. I haven't posted since my husband was in tx. We are now back home in Ga. He is 4 weeks post tx. I hope we are starting to see the light at the end of a very dark tunnel. He still has some mouth sores, but they are slowing getting better. He has the extreme sore throat. He has been struggling with his PEG feedings for the past few weeks. He says they make him feel too full. He was started on metoclopramide a couple weeks ago to help with the gastric empyting. This has seemed to help, but he desperately wants to eat by mouth. My trouble is coming up with ideas on what to feed him. He is a finicky eater in the best of situations. He turns his nose up at the thought of pureed food. He will not eat yogurt or cottage cheese. He has drank the broth of some canned soups. He will eat some melted ice cream. Tried some canned peaches last night, but they stuck in his throat and he panicked and I have to say I did too. I thought I would ask the experts here for some ideas. Thanks Amy

Amy - It seems to take a lot longer than it really does, especially when you see how painful it is for the person you love. My son did the chicken broth thing for several days and then agreed to do chicken noodle soup but did not eat many noodles. It was a gradual thing and we celebrated each time he managed to swallow down more noodles. Everyone is different in their reactions and I never knew from one day to the next what he would be able to take. A little bit several times a day is better than trying to get down larger portions less often. When my son ate yogurt, I bought a whole bunch of his favorite flavors and they just ended up decorating the refrigerator until they grew little green fuzzies on them! You just have to try different things until something clicks. After doing Ensure and Boost drinks for a couple of days, he went to Carnation VHC. Also there were times that he was able to swallow the drink if it was diluted with water. He did this with Gatorade, too. I think that Amy has suggested getting the childrens' Pedialyte as a liquid. I'm sure others will have good ideas for you.

Hi, Amy C. Tell us what his favorite foods are-maybe we can adapt them into recipes he can manage and enjoy. One of the things John could easily swallow after rad tx. ended was Angel hair pasta noodles covered in a rich, slippery sauce [either cream based or tomato based] depending on his taste buds. When he made shakes, he experimented with different ice cream toppings to mix in [good additional calories} and blend in the blender. Soft Mashed potatoes and [I cheated] canned gravies are a possibility. There is alot of trial and error- we had fuzzy things in our fridge also. If his throat is sore, not much is going to go down well. I know that many people here have taken a pain med. or a mouth swish prior to eating to dull the pain of swallowing. How is his weight holding- I know his attitude is rocky at present- hope you are coping O.K. Amy in the Ozarks

Hi Amy,
Eggs.
Crab legs, seafood in general. It seems to be a good constistancy for swallowing.
Mashed potatoes.
Tiny pasta shapes mixed in undiluted condensed soups.
Drinking the cans of formula that went into the Peg tube.
These are some things that worked for my husband at that stage. Hang in there, don't get discouraged, things will improve.

Ginny

Thanks Anne Marie, Amy and Ginny for your input. Today has not been a good day for Garron. Lots of pain and tired today. I feel like i could write a book right now, but i will try to keep it short. He did eat 1/2 can of soup that went through the blender today, a small portion of ice cream and 4 Boost Plus in the PEG. He drank 16 oz of water. To answer your question Amy, he has lost about 15 lb, 5 lb near the end of tx and the other 10 since tx. His recommended caloric intake is 2200. He was switched over to Boost Plus because of the extra calories. 6 has been recommended, but he can't get that many down. I am trying to come up with ideas to meet recommended calories since he is averaging 4 Boost Plus in the PEG a day which leaves him about 700 calories short. Garron does like mac and cheese, but I haven't tried it yet. I know everybody is different, but at what point is it realistic that one can start on soft solid foods. I have to say that I am exhausted and feeling very overwhelmed at this point. We were in Houston for 4 1/2 months for his tx. I went back to work when we returned home. You all are such an inspiration to me. I have to tell you all when I spoke with the RO nurse at MDACC last week about Garron's weight loss, etc., I was referred here for ideas and suggestions. I thought that was GREAT and should share it with you all. THANKS!!! Amy

Hi Amy, Relax, your doing great! Dont panick, he is right on track too (my track too) I lost 45lbs. in 4 wks. its still hard to eat at 4wks. and yes i still had my tube too. Start him off with more water, get his throat working more, believe it or not, that will help the soreness start to go away. Then i got most of my cal. through the tube then started off eating jello and oatmeal. Thats all i ate for a couple of weeks and water. Its a slow process, and then one day...you come alive again, and start doing a little more and more. Starting wanting to try foods again (its kind of scarey to use your throat by swallowing again) He might just need a little more time, have him get on the forum and follow some of the people's progress, that might help him too. We all think, that since the rad. is done then we should feel great and normal again, it just doesnt happen that fast, they told me, for every week of rad. then it would take that many months to get where i would start to feel good and really start eating, and it was true, im in my 6th month since rad. and it has taken me this long to start gaining weight back and to really and truely feel good. I still dont have all my taste back, but it is coming slowly but surely. You talk about his mouth sores...wow, that is the most painful thing i have ever experienced in my life (and i have had 4 kids, haha) but those sores are unbelievable. That could be another reason he isnt eating alot right now. I promise he will come back, its just going to take time. I too am a M.D. Anderson patient and i know he got great care, if you want to follow my progress, i kept record after treatment under "Hello Everyone" After Treatment. Anything i can help with, let me know. I will be praying for a speedy recovery for your husband.

Scrambled eggs, I make with 1 TBSP heavy cream per egg adn lots of butter. Beat with wire whish and scramble soft. Poached eggs, soft boiled eggs. Cream of wheat cereal made with water and covered with hot milk, butter and honey. Add 1 tbsp carnation instant breakfast to milk or other blender stuff for more protein and calories. Soups, pasta, lamb chops or prime rib very rare, lobster. Since he can drink, I would try to find something he likes that has calories which water does not. I drank apple juice and flat ginger ale. Everyone says mashed potatoes, but that was one food I couldn't swallow regardless of how much milk, butter, and gravy I poured on it. Think lots of sauces and gravies to get foods down easier. Pour heavy cream over fresh fruit.

The one thing to remember is, besides a sore mouth and throat, our saliva is compromised so we have to have food that have a lot of natural moisture. Anything with citrus will burn. Watch salt 'cuz at times that is the only thing we can taste. Sweet came back last for me.

Take care,
Eileen

DEar AmyC, we can all relate to the exhaustion, even if your body can crawl into bed for sleep, usually your brain does not. I used to spend hours [while trying to go to sleep] running through recipes and caloric concoctions that I might offer John the next day. The powdered milk addition to any milk based dish will add more calories. Adding fruit juice to the water he drinks is a good idea. Don't know if his stomach will tolerate it, but Coke and beer through the tube add calories as well as liquids. Lots of trial and error-lots of cooking and pitching things out [or scientific experiments growing in the fridge] One real thing John could eat a few months after radiation was babyback pork ribs, smothered in a mild barbque sauce and baked, covered,for an hour or two in the oven. I preboiled them some first to get some of the grease off. We know what a challange you are dealing with, and we are wishing you well. What a neat thing that MDACC suggested you visit here- I hope Brian reads your post! Amy in the Oz

Hi Amy:

My husband was treated at a cancer clinic which believed in integrative therapy. He saw a nutritionist every single appt. and we received a binder of great information on what to eat & what not to eat as well as what supplements to take. My husband never had a feeding tube. He did lose 30 lbs. but he is down to his normal weight now. Don't know if you had the help of a nutritionist, but I have lots of info I could copy/send to you if you wish.

Also, a good thing I had read about was drinking club/selzer water with a meal. Ken says it helps with his eating.

There is also a new product on the market called Caphosol. It sounds very promising in helping with mouth dryness/soreness. It is not cheap but we are getting 3 bottles through our mail pharmacy. I will let you know if it helps Ken once he starts using it. There is a web site: www.caphosol.com/careom which will explain this product. My husband's oncologist just told us about it.

Linda K.

Hello Everyone:

Thanks you all for your input. I find myself reading all the time and the words don't come for posting. Garron was coming along with his healing pretty well until this past weekend. He was in extreme pain Sat. and Sun. Up until then, he had started eating some soft foods and supplementing with the PEG. Since the weekend, he has not been able to eat. I don't really understand the setback. Is it normal to take a couple steps back??? His mouth is giving him a lot of pain. He says it hurts too much to eat right now. More mouth pain than throat pain, although it doesn't feel good either. I called MDACC today and we have added 2 more mouth rinses to our battle chest. We leave this Sunday for Houston for his 6 week scans and checkup. Please keep us in your prayers.

Thanks, Amy and Garron C.

Amy C and Garron, you've got my prayers, and the mouth pain could be thrush [which is really hard to control]. Hopefully your trip to Houston will find the reason and get it fixed. Glad to hear he has been able to eat some tho. Don't let him get dehydrated! Push those liquids by peg if necessary. By the way, we probably had 4 or 5 mouth rinses on the shelf , any of which might work on alternate days, so don't quit experimenting. Amy in the Ozarks

It is definitely a struggle! I had increased mouth pain at 6 weeks, and found I had thrush. It just adds more pain to the mixture. I took meds to treat this, but still have pain in my throat.

I see a nutritionist to help devise some things that I can tolerate eating, as it is important to regain swallowing capability. I too have the peg tube so that I can get enough nutrition. I feel like an infant coming off the bottle! The struggle goes on, and it is a long process.

I didn't eat any solid food for about 4 1/2 months. I lived on Ensure and some weight gain powder (mixed with milk) I got at the health food store. Didn't have a PEG, either, so nutrition was a real struggle everyday. Between the sore throat, sore mouth, nausea and constipation I developed an aversion to food. As time went on, however, my sense of smell improved and I began experiencing hunger. Little by little I tried different foods. I managed to eat some, but not most, of them. Keep encouraging him, and don't get discouraged yourself. He will come around and level off at the 'new normal'. Just have him make sure he gets enough nutrition and hydration everyday in the meantime.

Hello everyone:

I first have to say that we got good news this week at MD for Garron's 6 weeks checkup. CAT showed complete response to treatment. We are thrilled with the news. However, I am somewhat concerned that his CAT was done with partial contrast. For some reason every time Garron has a CT he vomits 1/2 the contrast. Everyone is a bit unsure as to why this happens. They premedicated him with Zofran and Ativan, but he still got sick. Nonetheless, the radiologist felt that the scan was clear. Chest x-ray was also clear. Labs were back in check.

As far as eating goes, it is hit and miss at this point - mostly miss. He had again started trying some soft foods, until he got sick during his CT. It aggravated his throat. Not to mention the hose up the nose thing and the fingers down the throat thing. He was not a happy camper with all that stuff. They told him at MD this week they wanted him to sit at the table 3 times a day and try to eat something. They suggested drinking the Boost Plus instead of putting it down the PEG. Only use the PEG at this point for supplementing calories and hydration. I am not quite sure how this is going to play out. I know, be patient right

Amy C. and Garron

well yeah but that's always easier said than done. Drinking the formula - and blending it into a smoothie with ice cream - worked well for Jack. It's a process that gets better over time. I think Jack also had success with scrambled eggs, and pureed dinty moore beef stew. Soups work too. I do remember that he could only tolerate a few bites of things in the beginning and it took him a long time to even do that. so small frequent trys could be better.

When Garron is up to it find one of those all you can eat buffets and experiment.

Great news on the scan, that's very encouraging.

Regards JoAnne

Thanks JoAnne. I think I am probably the most impatient person in the world and Garron is no different. However, I am becoming much more patient. The challenging thing for me is Garron is a finicky eater, even before his diagnosis and treatment and is no different now. He seems to turn his nose up at anything soft. I have very patiently asked him to please be open to try things that maybe he can tolerate and not things he would like to eat but knows he can't. He wants pizza, hamburger, steak, etc. A little over achieving. I understand it has been a long time since he has been able to eat the things he really likes, but I am having a hard time pursuding him to give other things a go until he can tolerate the things he really likes. I am afraid he will keep waiting to eat what he likes and will get in trouble with the swallowing situation. I have beef stew cooking now. I hope he will give it a try.

Thanks again,
Amy C. and Garron

amy c, Is Garron doing mouth stretching exercises? Hopefully someone has explained to him the the steak, hamburgers, etc. will require his mouth to open wide Since he has the peg to get nutrition down, he can turn up his nose at the soft foods to eat, but, if he doesn't do the stretching exercises, he may be in big trouble when he does feel like eating his favorites again. Glad to hear his tests were good. Amy in the Ozarks

Amen to what Amy has just posted above! While a whole team was working to successfully eradicate the cancer. nobody thought to explain trismus. As a result, any hamburger I eat is with a knife and fork. While there is a device to help open one's mouth wider (Therabite) popsicle sticks or tongue depressors will do it too, even your fingers. Just a little reminder from the Voice of Experience to keep opening your mouth wide.