I'm new to this site and wanted to introduce myself
I'm a 56 year old wife and mom to 1 son and 2 fur babies. I am from small town Midwest USA. I was a caregiver to a family member for 9 years before he passed and now I am the one needing care. I was diagnosed in June of 2022 with squamous cell carcinoma of the head and neck. I recently had a second biopsy to confirm the back of the tongue and 1 lymph node. I have spoken to my radiation oncologist but haven't started treatment yet. He stated 7 weeks of radiation and most likely chemo also. He suggested I have a G tube put in before I start treatment and I have been researching if this would be beneficial. My doctor said there will probably come a time when eating/ swallowing will become difficult and the tube will help. I'm about 75% convinced that it would be good to go ahead and have it done so that IF or WHEN I may need it, I don't have to stop treatment to do it. Does anyone have advice on this subject? I would appreciate another persons opinion or story as to whether it did or didn't be a benefit. I look forward to learning and sharing on this board.
Comments
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Hello DJ and welcome to the CSN H&N forum, good to have you visit but sorry for the reason. I find a reasonable amount of people that go through this are open to the idea of a feeding tube. But it seems many do not want to get the tube put in and say they will get through one way or the other. They will tough it out. I guess some folks feel like they are proving something by not getting a feeding tube to go through this. I get the idea that is an invasive operation and you have a tube hanging out of your belly for a while, but the fact of the matter is they are in an unusual situation of having H&N cancer and it takes special treatment to eradicate and this is part of it. Also, it is temporary.
You will find when you read me commenting on here about feeding tubes that I am pro feeding tube. if your doctor thinks you may need one at some time during your treatments and recommends you get one I am all for it, I agree get one. It will make it much easier for you if and when your mouth or throat area, or any area in there is terribly sore and it is just painful and work to get every swallow of food down to try to get enough calories in to maintain your weight. Did I say it, yes get one, this treatment is brutal enough to go through that when you can make part of it easy on yourself you should. When eating gets to be a chore and is very painful, you just switch to the tube for a while and it relieves the pressure and question off of your mind "how am I ever going to get enough calories in"?
And you are absolutely correct it is better to have it ahead because by the time you need it you will be halfway through treatment and starting to feel really lousy and then in the middle, you have to fit in an outpatient visit in among your treatments to get a tube in. Also, there are a couple of ways they put them in but I believe both of mine were put in by going down through my throat to the stomach, using that method, and of course, you are put under. That is like a pulling method and there is a push method also. here is a link to a video that explains plainly how it's done. Once it's in your doctor will instruct you how to use it.
That link should work fine even though you can't watch it here it should switch you to Youtube. Just click on it and it says something like can't be watched here, watch on youtube. If you have a problem just let me know and I will repost the link somehow.
My opinion is you would be making a wise decision to have it put in ahead of time. When I had my first cancer, throat cancer they would not start treatment till I had one put in and they were absolutely correct in doing that as the time came when it was painful swallowing, but I couldn't swallow at all anymore for a while and everything went through the tube, food, meds, water. It was a lifesaver for me and I know for many others it was also. And if you don't need it, very good but you were ready and it is one less thing to be troubled with.
Also if they haven't done so already they should be setting you up with a speech therapist also that will monitor your swallowing, speech, etc., anything you may have trouble with in that area they can help if need be. But mainly if you get to the point of not eating and using the tube solely you will not be swallowing and they say you can forget how to swallow and have to relearn it. That's where your speech therapist comes in as they will give you swallowing exercises to do several times a day to keep your swallowing active and when you can eat again you will have no problems. I was using my tube only for 4-5 months and did my swallowing exercises as I was instructed, and maybe even a little extra because I didn't want to have to relearn swallowing and down the road anytime I could finally start getting in things like liquid or say oatmeal I was swallowing just fine. Here is a lady from MD Anderson talking about it.
And here is a video of an example of swallowing exercises you may be given.
It sounds like you are in good hands with a cancer team that knows what they are doing and are planning ahead to make this as easy as possible for you. This is a tough treatment but you will get through it, so many have before you and the treatments are getting better all the time. For example, people used to get pretty sick at times with chemo but these days they have developed such good anti-nausea drugs that it is seldom a problem for most folks these days who go through cancer treatments.
OK I hope this helps and we have a saying here NEGU (Never Ever Give Up)
Wishing You the Best
Take Care God Bless-Russ
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DJ I forgot to add that right now if you don't have a lot of extra weight already that you should eat, eat, eat, anything you like and lots of it, and the higher calorie the better. Maybe pancakes with lots of syrup and butter and bacon or sausage on the side, whatever you can do to put some weight on. And also I have saved a list of calorie and weight gain recipes and ideas which may help you now many people use them later but anytime is fine. Most of it is from the forum and there is a little story preceding it that I think is nice to include.
Welcome
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 hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ
Take Care God Bless-Russ
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Thank you for all your useful advice. You have helped me in making my decision about the feeding tube. I have an appt next week to meet with the surgeon. I also go next week to have the mask made. I appreciate you being so helpful with all the information. Its encouraging to share with others that have been there and know what is ahead for me. I am not underweight, actually I'm probably 30 -35 lb over what I should weigh. Thank you again and I'm sure I will have more questions and concerns along this path. You are right that we never never give up.
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You are very welcome DJ and when you start treatment and progress there are a couple of other things we can tell you about, but your care team will probably tell you a lot of what to expect. One thing that mostly always happens to folks going through radiation is after a bit you lose taste, your food is bland, no taste, it's weird but it happens. That is another reason to have a feeding tube it is hard to eat when nothing has any flavor or taste. Also just to help you plan ahead a little I recommend if you have a recliner get it set up where you would like to be and sleep during and after treatment in the weeks of recovering after treatment. After a bit of radiation, your saliva gets really thick and it is better to sleep in a reclined position or sitting up is sometimes necessary for some folks but you don't want to lay on your back flat especially at night to sleep, because the thick mucous can make you gag and choke and you will want to keep it spit out and clear as much as possible. Even in a recliner, I had a couple of instances where I woke up and it had built up and cut my air off and I had a heck of a time getting it cleared and breathing again but somehow I did it. Also during this time you will want to use a baking soda and salt solution and rinse, rinse, gargle, whatever you need to do to have the mucous cleared out it cuts it and your mouth feels better. Below I will post a video link from a fellow that had gone through cancer treatment and he was one of our own here on CSN an alumnus of the H&N world, his handle was Beagledad and his name was Don. Very uplifting guy and had a great attitude and it helped him with treatment. In the video, he has some tips and tricks to help others prepare for treatment. He is through treatment and free of cancer and livin the life.
I will post more ideas to help you as you progress.
Wishing You the Best
Take Care God Bless-Russ
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I posted this at the bottom of his video just to add a couple of things that helped me also.
Hello, Don another great video to help people going through head and neck cancer treatment. I am glad you are laying out some basics here to let people know what to get for someone and above all what works to help and comfort and make things easier on the patient and caregiver. One thing I would like to add is for hospital stays or chemotherapy treatments when you need to charge your phone or tablet or just keep them plugged in for several hours or more while you are using them buy longer charging cords for them. I did not have them for my last hospital stint and wish I would have. You see the charging cords that come with a phone/tablet are fairly long but not long enough to go to an outlet when you are in a hospital bed or chemo treatment chair, it seems they are always 6 inches too short. You need these because no hospital or treatment center will let you bring an extension cord from home, not even a very short one to make up the difference you need. I have asked and the only way possible is to clear it with the hospital electrical department and that's another mess. So just go and buy the longer charger cord for your device, I have gotten some since then cause you are not catching me unprepared again, buy the nylon braided if you can because they are more flexible and more durable. I have 5 1/2 foot and 6-foot cords now but I am seeing that you can buy them up to as much as 15 feet long. I got mine from a vendor on eBay but they are all over the internet. Another thing that came in handy for me is paper towels cut into quarters. The "select a size" paper towel rolls are nice for this. You will find 1/4 of a paper towel comes in handy for when you have something to spit out but don't need a full or half-size paper towel. Also good to soak up little spills and seepage and throw away. You run into this kind of thing during cancer treatment and recovery. I always kept a pile handy and still do today. And hey Don I am glad you gave Piplilley from CSN a shout-out and made her famous. Thanks for the video-Take Care-God Bless-Russ
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And DJ one more thing anytime you have meetings with your doctors especially before treatment don't be afraid to take someone along so you have an extra set of ears listening. When you are a cancer patient it is hard to absorb and remember all the things they tell you. And also take a tablet along to write things down and for that matter keep it handy at home to write things down you need to ask your doctor or just anything you need to remember. Also, take your phone and ask if you can record or at least use the voice recorder so you can play it back for anything you missed in the meeting or are not sure of later on.
Also here is a link with information.
Take Care God Bless-Russ
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Dj,
Despite the fact that I got, but didn't use, my feeding tube - I would still recommend it. (I also lost 45 pounds though - so maybe I should have kept it ... and used it, after finishing treatment - for a while.)
Anyway, it's much easier on you to get it before you get into treatment. It's one of those things that seems like a big deal - but you will get used to it, pretty quickly.
I'm very sorry to hear about your diagnosis, and Radiation and Chemo are very scary - when you first hear about them. But, the people on here are all proof, that you WILL get through it all!
I wish you the best possible outcome!!
MG
(I am also from a small town in the Midwest 🤤 .... Idaho, now...)
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I agree with the above. I had a temporary feeding tube through my nose after a full neck disection and it was removed before I started radiation. (no chemo) After losing 92 poundsthey threatened to put another tube in but I refused and forced myself to eat whatever worked for me on that day. They told me after the fact that thewy could never force me to get a feeding tube but they hoped the threat of would keep me eating the best I could. For many moths after I use to joke with them saying NANNY NANNY POO POO NO FEEDING TUBE FOR ME. I am over 12 years out and can truthfully say if I had to do it over I would have gotten the second feeding tube. Like Russ said eat like hell beforew radiation. Eat lots of ice cream............it may not help but it certainly ain't going to hurt.
Good luck
Jeff
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That's something I never would have thought of, so thank you. There are so many things to process and sort out on your mind combined with just being nervous and scared. Recording is a good idea. Unfortunately, I don't always have someone that can go with me but I'm ok with going alone.
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Dj,
That's one thing I'd like to reiterate from above.
EAT EAT EAT - ALL of your favorite foods and a LOT of them.
(It is almost impossible to describe temporary loss of taste....)
It doesn't matter if you gain a few pounds ... you NEED them, before you start treatment.
So - fire up the grill and EAT UP!!
Also, you asked about fatigue. Your body has to work pretty hard, to recover from treatment. It takes a lot out of anybody. Make sure you get the rest you will be needing; it's not time to play Super-Woman!
MG
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You do what you have to. I didnt have to work as I am semi retired and so I didnt….I should say I did the minimum from home. But I know people who just kept doing what they had to do successfully. Stay ahead of the neck burns using topical ointments, take in your calories through your tube if necessary and stay ahead of the other side effects, don’t wait until they present. You WILL get through this!!!
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I got before tx- Chemo Dr. knew the regiment of C&R they were going to put me thru, and did not give me a choice. And I sure am glad I got before tx started.
Your regiment will be different (mine was 19th Century!), but like MG said- it's good to have in case of needing it. And I got so sick I was Hospitalized for 4 nights in week #6, so would not have been a good idea to have the FT Op., installing it, during tx, as I was having a rough enough time as it was.
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