Marvin has been post tx for 6 weeks now and we are still having a hard time trying to get any food in though his mouth. We usually only make maybe 1/2 cup of soup. I continue to give him his daily amount of cans though the peg but the doctors tell us he needs to eat more to get more energy back. I have tried several things and he says they are all to hard to eat. I took cottage cheese and pears blended and he said that was to hard also. I try the ice cream with added protein carnation instant breafast but here again he only gets maybe 1/2cup down. Do I need to start to be more pushy to get food in or is it still to early? Has anyone use whey protein powder mixed in their liquied food for the addede protein? I am looking for any ideas of what to feed him. Eggs didnt work either, I am feeling lost as to what to do to help him increase his food intake. The Rad Doc to him it was his job to eat more and he said he would but still cant seem to get more the that 1/2cup all day in.

Barb, hi. I'm almost twelve weeks post tx and I barely eat a mouses meal at night. I drink 2 full meals (16 oz. 910 calories) then at dinner I will drink 1 ensure plus and try to eat something. Last night it was about a third of a chicken tender and 20 oz of water. It took that much water to wash it down. I know there is no way for me to be eating meals, I would burst with the amount of fluid it would take to get enough solids down to match the calories of the supplement drinks. At six weeks my throat was still very raw and the thrush was full blown. At six weeks I was drinking three meals, 16 oz a piece and 910 calories per meal. Total 2730 calories. I added weight and felt ok. Good Luck.

Hi Barb,
You didn't tell us why your husband can't eat more. Is it because he cannot get his mouth open, cannot chew it, cannot swallow it, what? If it is the taste, that is not a valid excuse. Has he had a swallow test or is it too soon?

The food he tries should be very moist. He should drink large quantities of milk or some other beverage with calories with it to help wash it down, maybe apple juice. Everything should be cut into tiny pieces to make easier to swallow. It takes a very long time to eat this way so don't expect him to finish for another half hour after the rest of the family is done. I read a magazine to keep myself from getting bored with these very long meals. He needs to keep swallowing or he will lose his ability to eat altogether.

Try hot dogs, mustard and relish no roll,and baked beans. Cream of wheat cereal with warm milk and butter, or oatmeal. French toast with loads of syrup and butter. Ice cream smoothies, blueberries with heavy cream. Rare lamb chops, prime rib with loads of au jus, lobster with loads of butter.

Take care,
Eileen

Barb-

When I was 6 weeks post tx I was just starting to eat, too. I had problems with thrush as well. You would think that ice cream would be an easy choice BUT it was too cold. It almost stung my mouth. I did like to eat cereal cuz it would get soggy in the milk. It takes FOREVER to eat (I'm 12 weeks out). It literally takes an hour to eat a Blizzard. 45 mins for a cup of broc cheese soup. 6 weeks is still pretty early.

Thanks for all the replies. I can see that maybe I am expecting to much. I know that it bothers Marvin when I expect to much. He seems to get depressed and feels like he is letting me down.

I think the main reason for not eating is it is hard to swallow. He did have a swallow test which showed that everything was working good with only a few times of things not going down right. I am tring to get him to use the numbing stuff before he tries to eat but he says it doesnt last very long. Should I try to get him to drink his carnation more then put it in by his peg? Marvin has only had one round with thrush but we keep watching for it.

I never thought about ceral and letting it get soggy I will try that.

my husband is 5 wks post tx. and all he can manage to swallow is about 3-4 bites of something. He said the pain of swallowing is what stops him. I had to use tough love to make him swallow something every nite. He wants to eat but just can't. Thank God for the Feeding tube. Tonight he had 1/2 cup of cottage cheese and a few bites of watermelon as the tears roll down his face. His OC told him You eat and swallow the freaken food and freaken cry if you have to. I know it sounds harsh but it got his attention! You can't lose the ability to swallow! Good luck, I know what you are going through!

Barb,

If he is having this much trouble eating then he should perhaps be re-evaluated by the speech/swallowing therapist. After the swallowing test (was this a fluoroscopic barium swallowing test?) the therapist should have given him some exercises to do to strengthen his swallowing muscle bundles, tongue etc. No one, even if they ate all the way through treatment like my husband, gets through this treatment unscathed. Barry was given about 8 exercises after his swallowing evaluation (which was done about 6 weeks out of treatment) and he did them religiously, they really helped -- not only in preventing aspiration of food or liquid, which has a real risk of pneumonia, but also enabled him to start eating more "normal" foods and to start moving away from a reliance on things like soft scrambled eggs, cream soups and shakes.

If swallowing is too painful, then his pain medications may need to be re-evaluated as well. My husband used the Duragesic patch for two months after end of treatment, gradually sequeing from 25 mcg to 12 and then off, and some folks have needed this help even longer. Pain should not be the barrier to eating -- however the cause of pain can involve lingering sores and ulcers, strictures or even thrush so this needs to be looked into as well. Mucositis should be starting to heal within a month but may be exacerbated by thrush -- use lots of salt/soda rinses and try products such as Rincinol (over-the-counter) or Gel-Clare, it's prescription counterpart, to coat the mouth. Ulcer Ease also can help.

Adequate food is important in healing and also, in regaining a feeling of control so it really important to encourage him to try to eat, but don't bully him.

As an aside, some folks find very cold things such as ice cream as well as hot foods hard to swallow, literally -- not everyone has the same issues, some people eat ice cream from almost day one. Experiment with various things like custard (real custard made with eggs and milk), pureed soups etc. Seafood soups for some reason (maybe because they are salty) are more palatable to many when first coming out of treatment -- I used to make a cream of crab soup and puree it for my husband. It was popular!

Gail

Barb,

I was able to eat cottage cheese, ricotta cheese, and apple sauce as my first solids. Did you try easy foods such as those?

Rob

Hi Barb,

I think Gail is right about following up with a speech therapist as that really helped Jack. Like Barry, he was very compliant with doing the exercises to build the muscles back up. That was after a video swallowing test to see what the issues were and where the food was going when he did swallow. If that test hasn't been done I would highly recommend it. I also purchased a book from the OCF website "Easy to Swallow, Easy to Chew Cookbook" and it had good tips on progressing foods. I actually got in touch with the author Donna Weihofen who told me that it was important to start with something he could be successful with and progress from there as he mastered each level. It usually goes liquid to puree to soft to solid food.

In the beginning Jack used his Nutren tube feeding formula with chocolate and ice cream blended in. He let it get more room temperature because both too hot and too cold bothered him. It's food and he swallowed it so we figured that was a good start. The amount of food he could tolerate in the beginning was very small and took forever to eat so don't let that throw you.

Regards JoAnne

Barb,[ speaking from experience here], you will find yourself walking a fine line between encouraging and nagging. Keeping Marvin swallowing, even if it's just liquids is a good thing- keeping his calorie intake up to par, even if it's through the peg is of utmost importance. Has his Rad Doc ever had radiation? Let Marvin think of things that he might want to tackle by mouth, fix them and throw out what doesn't work without a backwark glance. It sounds like he's trying and it's a slow process to find the food consistancy and taste that works for him. Ask him what temp. the food should be, whether he wants to try sweet, salty, spicey, etc. Is getting food to the back of his mouth to swallow an issue? In our situation, John lost all but 5 front upper teeth and 1\2 of his tongue, so manuverability of the food in his mouth was an issue. Talk to Marvin about the issues he can identify and then try to select foods that will not be too dificult. Best luck getting through this. Amy in the Ozarks