Not eating or drinking due to stomach pain

SSGJR1

Hello! First post on behalf of my husband.

He was diagnosed with Stage 4 throat cancer on the base of his tongue back in March. He had 3 chemotherapy sessions and 35 radiation treatments. No surgery. The last one was about a week ago and the last chemo session 2 weeks ago.He never had a feeding tube and up until last week he was able to eat soft food and drink almost anything. After the last chemo session he has pretty much shut down. He won’t eat anymore and he barely drinks. He spits up large amounts of mucus and says that his stomach hurts anytime he eats or drinks anything. The mucus attacks wake him up from sleeping.

Prior to this the doctors were saying he was doing really well that far into the process. I don’t know exactly what I am looking for. Maybe some idea on things he can try. He doesn’t have any mouth sores, just the stomach pain after 1 bite and of course no taste, but the stomach pain is what stops him from eating and drinking.

he doesn’t want to get a feeding tube now, but I think that may be the only option?

wbcgaruss

Hello SSG and welcome to the forum for H&N cancer, a place we don't want to be but you can find answers here and support.

I too had throat cancer and 35 radiation treatments and chemo beginning, middle, and at the end. Plus previous to that I had 2 hospital stays a week at a time of 24/7 chemo to pre-shrink my tumor.

There are several things going on here. I will address the mucous first. After radiation, you get very bad thick mucous as your husband has found out. I guess it comes from having less saliva and maybe dead cells from the radiation, cells that are collateral damage I think but I am not sure what exactly all plays into it. This will diminish over time but it takes a bit of time. Mine was very bad like your husband and also woke me up and several times had my air cut off and it was a chore to clear. I would recommend sleeping in a recliner during this period if he isn't already. There are a couple of ways to handle this but both involve getting it out. One is to rent a suction machine for this purpose, see your doc about this if you want one maybe insurance will cover it. The other way is to use a salt baking soda mix rinse which is very cheap to make and works well. This is what I did and the key to using this and or the suction machine is to do it often and stay ahead of the mucous. I used the rinse and used it as often as I felt I needed to sometimes rinse my mouth as often as every 10, or 15, or 20 minutes at the height of it. Again the trick to managing it is to stay ahead of it and be proactive. Rinse as often as necessary. It will clean and refresh your mouth also and make you feel better.

Here are some rinse recipes below--

Mouth Rinse Recipes to Use During Chemotherapy Radiation

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.  

The next thing is his not eating because of stomach pain. I don't know why he has stomach pain that is not directly related to rads and chemo but it may be connected in some way, such adjust upsetting his stomach, or is he severely constipated? I would contact his care team or doctor and make them aware of this and he either needs something to alleviate the cause of the pain or it is something that will come about as recovery progresses and will take some time. If necessary he may need pain meds for a bit and if that is the case you need to do the same thing with pain as with the mucous, stay ahead of it, get it under control and take the pain meds on a regular schedule don't wait till he is in bad pain. I lean more towards the idea that something is causing this pain that can be alleviated and he doesn't need the pain meds but I think a call or visit to one of his care team is in order here.

He is also probably not eating because food has no taste, sort of like cardboard. I and many on here have been through this and you can't wait till your taste comes back to eat. As difficult as it is you just have to force a certain amount of food through to get enough calories in so you don't lose weight. This is tough eating with no flavor but he has to force it in. Easiest thing is smoothies with as much calorie content as you can include in them. Or there is a product you can buy called Boost VHC (Very High Calorie), it has 530 calories per 8 ounce serving. I could never find the VHC in the store you need to buy it online through vendors or I always got mine through sellers on eBay. I am including some weight gain recipes and ideas that I had previously save in a word doc to repost as below.

To the forum glad to have you. I too ended having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.

The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding

3/4 cup half & half cream

1/2 cup of water

1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

In Closing:

I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.

Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.

Be patient and Eat, Eat, Eat.

I would say he has gotten to a point in this recovery that I would call the toughest time when you are going through some of the worst of it and you just have to concentrate on the issues at hand and do the best you can till you get through the worst and one day the will suddenly realize that he is slowly step by step seeing relief from the problems and starting to feel better.

I know many people just want to avoid a feeding tube but it lifts the burden of getting enough calories in and meds also if swallowing is a problem. If pills are taken by tube you need to grind them, if you get into that let me know I have a pill grinder I will recommend and it is not expensive. I lean a lot more towards having a tube and they can be a lifesaver. I have had a feeding tube twice. So don't fear the tube it is your friend and is only temporary anyway.

It is important to remember if you don't already know that recovery from this treatment is slow, not a fast process and measured in weeks and months, not days and weeks with something like a cold.

Stay strong and committed and on top of it and he will make it.

I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ

SSGJR1

https://csn.cancer.org/discussion/comment/1697824#Comment_1697824

Thank you so much! This is helpful.

He had been doing the baking soda/salt rinses for about the first 5 weeks and then sort of stopped. I’ll have to have him do those again.

He actually does have a suction machine. Before the treatments started, he actually had to have a tracheotomy ( which was removed after 3 weeks of treatment) and so we we still have that piece of equipment.

He has been constipated and I felt like that along with his limited mobility this past week is contributing to the pain. But yes, we probably just need to let the oncologist know just to make sure.

Thanks for all the recipes and ideas. We knew it would be hard but I am still at a loss and I know he is struggling.

My heart goes out to everyone on this page who has gone through this process. You all are amazing!!! Thanks for taking your time to share.

wbcgaruss

I tell you this was absolutely the hardest I ever went through in my life up to that point.

You have to keep up and just keep up the salt rinse and or suctioning till it gets a whole lot less of a problem. Whatever you do you just have to go from minute to minute, hour to hour, day to day whatever it takes and one day you will notice a breakthrough to feeling better. As they say tough it through. He will look back on this months or maybe a year from now and say wow I don't know how I made it but I did.

We have a saying on here too "NEGU (Never Ever Give Up)

If he has been constipated that is part of the problem and is another part of his recovery to be managed. During this treatment you many times have to deal with diarrhea, constipation, nausea, pain, thrush, sores in your mouth, and the list goes on but you will be done some day and glad you got the treatment and be thankful to God for every new day. So continue working on this and get the constipation under control whatever that takes and I think that will help a lot.

Keep us updated on his progress.

Wishing You the Best

Take care, God Bless-Russ

motorcycleguy

SSG,

Your husband must be pretty hardy, if he never needed a feeding tube! (I didn't use mine, but I did lose a lot of weight).

If he can avoid the feeding tube, I think he would be better off. I hear that the esophagus can "forget" how to move food, if it isn't used for a period of time.

I would suggest that he keep trying various foods (maybe smoothies, yogurt, eggs or "softer" foods), to see if his stomach can handle those.

In the end, he does need to "eat" - so if his stomach just can't handle it, a feeding tube may be necessary. But, in my opinion, if he can avoid it ... it would be a preferable option. Obviously, though - the opinion of his Doctors would be better than mine on this, and you should be speaking to them clearly and emphatically about his stomach issues. It's likely holdover from chemo ... but they should know!

I wish both you and your husband the best, and I hope he feels better soon. It takes a little while - trust me! 🙂

MG

wbcgaruss

MG is correct, they say you can actually forget how to swallow and will have to relearn it. So if they do put your husband on a feeding tube they should assign a speech therapist to him. The speech therapist will watch over your husband's swallowing and other functions pertaining to the radiated area. But the BIG thing is they will give you swallowing exercises to do every day to keep your swallowing active so when you can take food in a gain it is no problem because your swallowing was kept active all along by doing the exercises. And it does not take long to do them and I think I did them several times a day. In my case, they would not start treatment till I had a feeding tube installed. I was totally dependent on the tube after a while as my throat was swollen and I couldn't get anything through. I did my swallowing exercises as prescribed and when I could eat again it was no problem swallowing as usual before treatment.

Take Care God Bless-Russ

SSGJR1

https://csn.cancer.org/discussion/comment/1697864#Comment_1697864

Thanks for your response.

When he finally saw the ENT, he said the mass was as large as a racquetball and they were so concerned about him not being able to breathe he was in the hospital within a few days to get a tracheotomy. Because of that they delayed the feeding tube. He was still eating small amounts of food up until his last chemo treatment so this really threw us. He’s been going in for hydration treatments and the Doctor did come see him to see what was going on. They gave him a few prescriptions that they are hoping will help with the pain. He lost 10 pounds within this last week so I think they may consider doing a feeding tube. Luckily he met with a speech therapist since the beginning so he has been doing the exercises and will just need to keep that up if it comes to a feeding tube. I am hoping it doesn’t come to that, but we will let the Doctors decide. We will see how the next few days go with the medicines and hopefully he can eat a little more each day. I cannot imagine what he is going through ( or really want any of you all have experienced) so it’s been challenging to try and get him to eat without being pushy.

Congratulations to you and your recovery

SuzJ

What he is going thru, is sadly - normal, the weeks following rads are horrible.

Ice cream with honey slides down

I was wierd (no comments!!) I liked, and could handle, chilli (wendys) apart from that it was boost all the way

His stomach is hurting because there is nothing for the gastric juices to work on.

For weight - Boost, carnation instant breakfast, ice cream, banana, ice, blended (plus anything else with calories) just drink it slowly sun up to sun down, this is where a thermal mug is useful.

wbcgaruss

Very Very good advice Suz you are a smart gal and explained things well

Take Care God Bless-Russ