Jim finished his treatments two weeks ago. Yay! He has continued to swallow water and small pills thru the treatment, but all nutrition has been liquid through his g-tube. His MO said 4 weeks after treatment he may begin to eat soft foods such as pudding, yogurt, cream soups. Can he try sooner or is there a risk of getting choked before then?

It is not an issue of choking as much as an issue of pain. I went to a liquid diet for a while after radiation (no peg). The first thing semi-solid I went to after that was pudding. I started that about 2 weeks after treatment and that was always about how much pain I could tolerate and what I felt I could keep down as the no taste issue made me want to gag on all food at that point.

For me, eating got better fairly fast after that and I was back to solid foods in no time.

Congratulations to Jim on completing treatments. Everyone has different issues with eating. I wasn't able to eat "real" food for about 16 months, but had my peg out well before that as I was able to swallow Ensure, smoothies and milkshakes and such, just couldn't handle anything solid due to the combination of bad taste and no saliva. Others are on solids much sooner and some few take even longer. You just have to try whenever you feel up to it and hope it works.

John started eating by mouth around 6 weeks out of treatments.

Three weeks post Tx and I started "eating" things like mashed potatoes, mac n cheese, fruit cocktail, cut up ham. Nothing tasted right but boy was I glad I was eating solid foods again.

Thanks for letting me know what to expect. It is so hard to eat in front of him because he wants real food so bad. I just keep telling him we're one day closer to it. Shhhhh...I haven't told him the food won't taste good at first.

For those of us that didn't have a peg, we started eating real food as soon as we could swallow it. I don't remember anyone setting any time limit on when I could start. I lived on Ensure Plus for a couple of weeks after treatment and then started on eggs, apple sauce, yogurt, soup, etc.

I'd ask the doc if there is any reason why he can't try now. The more he swallows, the less likely he is to lose the ability.

Take care,
Eileen

Agree with Eileen. The time I stared is when I walked out of my tunnel and I finally felt I could try something solid. I didn't have a PEG and my throat wasn't that sore but nausea was my problem so I started trying solid foods as soon as my nausea slacked off. Up until that point I was barely living on swallowing VHC.

David, when did your nausea slack off? Jim has had constant nausea from about day 4 of the treatment regimen. The cisplatin was the first culprit. Then carboplatin, even though MO said it rarely caused much nausea. Wrong! He threw up the first night! So he has pretty much stayed on his Zofran and Phenergan. It's been two weeks since he finished the treatments, the mucous has slacked off and he feels better but we're hesitant about putting the anti-nausea pills away. Do you remember when your nausea subsided?

[quote=Jim and Deb]David, when did your nausea slack off? Jim has had constant nausea from about day 4 of the treatment regimen. The cisplatin was the first culprit. Then carboplatin, even though MO said it rarely caused much nausea. Wrong! He threw up the first night! So he has pretty much stayed on his Zofran and Phenergan. It's been two weeks since he finished the treatments, the mucous has slacked off and he feels better but we're hesitant about putting the anti-nausea pills away. Do you remember when your nausea subsided? [/quote]

Hi Debbie. I hope you don't mind if I jump in here. My husband John was on both Zofran and Companize all through treatments because the nausea was so bad. He didn't talk for a month because every time he tried the mucus would make him gag and throw up. He was totally off all anti-nausea meds about 1 month after treatments ended.

Thanks Wanda. Maybe he can wean off them soon then. Also, if you have any food recommendations for his first attempts (something that may taste good), please send them my way.
Debbie

When I finally started eating I was able to handle most things as long as they were accompanied by mashed potaoes and gravy. But the 1st thing that qualifies as "food" that really tasted good (much to my surprise as I was ready to spit it out immediately if it tasted as I expected) was won ton soup from the Chinese restraunt around the corner. After that my taste improved very rapidly.

Typically takes weeks for the taste buds to recover and then it is gradual. So, it's not about tasting good now but the simple act of downing more solid food which is a victory in and of itself. As noted, apple sauce, jello, soups of any kind, eggs, and PANCAKES with lots of butter and suryp. Best to him on a faster than normal recovery.

Debbie,

I noticed my nausea going away in my 3rd week post Tx. Remember we all can be different but it seems a lot of us walk out of that Tx tunnel in the 3rd to 4th week post Tx. Things will S L O W L Y improve once he things the worst is over. He and you must be patient as the recovery can take every bit of 2 years with the 1st year being the most challenging. He should know when he's able to try solid foods again.

Some patients need to have swallowing tests. They can choke or aspirate. Thats why returning to the world of eating is something that should be done very gradually.

Funny, we all eat the same things. I used to eat won ton soup like crazy, not right away cuz it burned my mouth. But after several months post rad I was living on won ton soup, yogurt, pudding and applesauce. Unfortunately, Im still at that same level several years later but thats due to my own issues. Its unusual, most people are able to return to eating very gradually.

Best of luck with your husband trying to eat again. It will take lots of time for him to eat a tiny amount and it wont taste very good for a while. He will get there, the worst is over

Debbie, congrats to Jim for getting through it all. The worst is over!

Reading these posts reminds me once again how different the course of treatment and recovery is for all of us. I was unable even to think about solid foods for at least three months after the end of Rads. I had no PEG and lived basically on Ensure clones for 6 or 7 months, gradually introducing things like watery oatmeal and soup.

I was also nauseated 24/7 for 3 months. Zofran did nothing and it was finally only Compazine that gave me any relief. Those were tough days. So don't put it away if Jim needs either!

As far as "recipes", I began with packs of Miso soup. Then I made myself a vegetable soup by boiling carrots and potatoes and a bit of onion with some veg bouillon. But I don't eat meat so expect you'll want something different. The main thing was making it soft and bland and letting it cool to near room temp.

Good luck to you both. He'll do fine!

The Other (or at any rate one of the others) David

Congrats for finishing treatment. I am 9 weeks outs and am still eating soft foods. I am so afraid to eat anything other than pudding, applesauce..., However, I tried some shrimp today cause I was craving it, and it was so good and I was able to chew it and swallow it.

Shrimp is good, but lobster is even better with all that butter. Also try a rare lamb chop, rare steak or prime rib. If you are still only on soft foods, no wonder you are still losing weight. Time to get some real food in you before you abandon that peg.

Take care,
Eileen

The advice from Christine B. is the best! (as always!) My TX ended 6/20/08 & on 8/08 I tried to eat some cream of potatoe soup & almost died! I'm not kidding! I had a swallowing test done & found out that scar tissue damage from the rad. closed up my throat to the size of a strand of spaghetti ! No wonder I was choking on eveything I drank! So I needed 5 (in a row) gastroscopies done. The opening went from a 1 to a 16. (Most people I guess are @ 21) But with 16 I am able to swallow OK. The Dr. said I would need to have my throat "stretched" every 3 months...for life! X-ray are used during this procedure, so that was not music to my ears! As it turns out I was able to go 17 months before I needed another stretching! So this is why I agree with Christine B. Choking on that soup & not being able to breathe was one of the scariest things of my life!

Also depends on the effects of the radiation. My Dx was similar to yours, although I did not have the neck dissection. After 35 RT treatments, when I tried to eat I would choke. My oncologist sent me to an upper GI doc. The top of my throat was closed to less than the opening of a straw by the scarring from radiation. I've been through six sessions (over eight weeks) to open my throat back up. After the fourth session I could finally swallow some real food without choking. I can eat now, but still small portions, small bites - lots of chewing...

It's been about 5 weeks since I originally posted above (7 wks post tx) and Jim has started "eating" small amounts of soft foods. When I say small I mean SMALL, like it's an accomplishment for him to eat one tablespoon of pudding. He thinks he wants it but when I put it in front of him he will try one tiny bite then say he can't eat anymore. His throat is sore but not so sore that he can't swallow, so it is such a puzzle to me as to why he won't try to eat more. Here is this 6'3", former 215 lb. man who loved to eat any and everything, and now he's afraid to eat jello! It's like he has an aversion to food now.

Debbie:
I totally understand how Jim feels about food. It's been over 2 years since my treatments, and I still have virtually NO appetite; also the smell and thought of food is a turnoff. I eat, but force myself to because I know I have to. That is what Jim will have to start doing. He should get some of the VHC Carnation Instant Breakfast drinks that are loaded with calories and the cans are small and easy to get down with a straw, in order to maintain his weight, and other suggestions from others on the Forum of what to eat/drink (Check out in the Search box). I can imagine how it worries you to see him not eating, but he's just not hungry, and has no desire for food - in fact, if he's like me, it's a chore to eat. BUT, he needs to either eat or drink in order to survive and that's what it's about. Tell him he's not alone because there are a lot of others like us, but we do what we have to do.
julieann

Eating is something that gives us pleasure so when you remove the taste from eating and then add the dry mouth to an already unpleasant experience you really take eating to a chore level and therefore we don't look forward to eating anymore. Believe me without knowing what it feels like to not be able to taste one's food you just can't imagine how unfun eating can become.

Stangely enough but fortunately Jim can taste the little bit he's eating. The dryness is bad though and he says sometimes when he swallows, the food gets stuck about a third of the way down. Mentioned it yesterday at his appt. with the RO. She said he was right on course as far as eating goes. She advised to take a drink of water first, then a bite of food, then chase it with water. He had not been drinking water before taking a bite. We'll see if that helps. In the meantime, thanks for sharing. You helped me to know he is probably not developing a mental block towards eating. It just takes time.

Deb,

This recovery can take EVERY BIT of 2 years with the first year being the slowest so don't you and especially don't let him get discouraged.

It took me over 1 1/2 to 2 years to start eating in a "new normal" way. I still supplement with ensure though because I cannot eat everything I did before and not as much.