Hi- I'm very new to posting and have never been a part of this type of discussion but am very happy this exists. My husband was recently diagnosed with oral cancer, growth on tonsils and just finished week 2 of radiation treatment. Eating very little since its very hard to swallow and trying to supplement with recommended protein drinks. They want to start him on a feeding tube this week but so far he has been refusing. He has 5 more weeks of rad treatments so it seems inevitable. Would love some input.
Thank you!

Welcome, Joann, if this can be moved to "introduce yourself" section, you will get more responses, and help. I had the same cancer, tonsil, which is in the oropharynx. I assume the doctors expect continued difficulty to eat, thus weight loss, that may effect his successfully completing treatment, and ultimate outcome. The worst is around the last two weeks of treatment, through several weeks after. It gets more difficult around the 3rd week. I don't want to take over this thread, but look forward to another posting.

Welcome to OCF! Glad you found this site to help you and your husband get thru the next several weeks. Click on the flashing tiny envelope next to the My Stuff tab. Ive sent you a private message (PM) with important info on how to use the forum. Click on the enclosed link to learn the ins and outs and get directions on how to add your signature. Please add it as soon as you can, it helps us to help you.

Radiation treatments are no picnic! They get progressively more difficult as time goes on. he hardest part is the first 2 weeks after rads ends. Best thing to do is focus on what is within your control, your husbands intake. Every single day he needs to take in at the bare minimum 2500 calories and 48-64 oz of water. This needs to be done until he hits the 1 year post rads mark. Going thru radiation treatments burns up calories at a very fast rate. His intake is what will make this whole thing easier or harder than it has to be. If he begins to have issues swallowing, encourage him to take small sips thru out the day to keep those muscles active and functioning.

Hang in there! We are in your corner and will help you both get thru this. Be good to yourself, being a caregiver is a tough job.

Welcome Joann.

There are a couple of schools of thought about PEG tubes. I got away without using one. The doctor explained it to me that I should hold on to "normal" as long as I can, and a PEG is a level of care and attention nobody wants.

But the number one thing is getting that nutrition in. If the doctors have recommended a PEG there is probably a good reason, and its most likely to do with his inability to get enough nutrition doing what he's doing. As Christine and many others will tell you, it is imperative to get those calories and proteins into him for the body to deal with the treatments and repair. The more he gets in the shorter and less complicated his recovery. Also if he has any other symptoms, nausea, constipation, tinnitus, make sure he brings those to the attention of the doctors straight away so they can manage them.

Best wishes for a smooth treatment and quick recovery. Let us know how you both get on.

Thank you Paul.

In addition, some key points in getting through treatment are:

Adequate nutrition
Adequate hydration
Neck Care
Impeccable Oral Care
Pain Meds
Constipation Care
Appropriate medications for any Bacterial, fungal, or viral infections
Mucocitis care
Anti-Nausea Meds
Thick mucus care
Dry mouth care
Light exercise
Sleep, Rest
Emotional/counseling/psychological care/medication
Caretaker care

http://www.oralcancerfoundation.org/complications/index.php

Each can be discussed further in detail now or at the appropriate time, if you have any questions. Certain drugs, like Cisplatin, have side effects that may cause neuropathy (tingling in hands, feet), hearing changes or tinnitus, vision changes that need to be brought to the oncologist's attention when they sart to occur, which can otherwise be permanent. Hydration is important to flush the kidneys of chemo, in addition to hydrating, reducing side effects.

Good luck

Were his cancer cells tested for HPV?

Was he a tobacco user?

Re the PEG, usually most don't need calorie assistance until late in the treatment or not until the radiation is completed as that 2 to 3 week period post Tx is usually the toughest part so usually we are only talking about 2 to 3 weeks where a feeding tube is REALLY needed. There is a great alternative to the PEG and that is the nasal tube and unlike the former it requires NO surgery, involves NO pain, has SIMPLE to EASY maintenance and a Do It Yourself removal. I know because I fought the PEG but finally relented to the nasal tube which was installed (takes a minute and an x ray) in my first week post Tx. I used it for 2 weeks and pulled it out at home myself. It really made a positive difference but I am sooooo glad I didn't get that PEG.

Re nutrition, look into Boost VHC (stands for Very High Calories). Have to order it online or thru w pharmacy dept of say Walgreens or CVS. It is a small 8 oz can but packs a whopping 560 calories. When the swallowing gets tough all he has to do is drink 5 to 6 of those each day. I lived off of those during Tx and well into my first year of recovery where calories are just as important. Also he needs at least 48 ozz of water each day as well.

Welcome Joann to OCF.

Two weeks into rads is about where many start feeling the effects of radiation. Difficulty eating and swallowing is a near universal side effect, ranging from minor to extreme.

Getting calories and hydration are key and essential and if one can not do it any longer than a feeding tube is needed.

I got through without one and my team of doctors were all supportive of placing a PEG if and when necessary. They all agreed there is less chance of long term swallowing complications by continuing to swallow naturally.

It was very hard for me getting by without one. Eating and swallowing was very painful but I kept at it knowing I was forcing food down the passage I needed long term.

Liquid nutrition is fine. Use pure protein powders mixed with milk and add other high caloric foods like peanut butter and blend it up.

Protein and fat offer twice the caloric density than carbohydrates. Some tout juices and vegs which are great when feeling good but offer low calories so much pain - little gain. May as well get the max benefit for each swallow.

Good luck.

Hi, Joann,

My husband had a very tough time with radiation and had a PEG tube placed before he began IMRT with the caveat that he may not ever have to use it. Well, thank God he had one as he lost weight and would have been in big trouble without it. He actually had it for 2 years. He also had numerous complications that others may not have had. So this is a personal choice. He always felt grateful that he had one.

Significant weight loss during radiation is not a good thing as the fit of the mask becomes loose. Ideally, you don't want any breaks in treatment if you can avoid it. Radiation is cumulative.

The bottom line is that you will do what feels right for you. All the best with continued treatment.

Anita

I resisted getting a PEG tube but relented and had it placed a week before beginning radiation and chemotherapy. It turns out I had a hard time getting both enough nutrition and hydration so, ultimately, I was glad I had the sense to listen to what every medical professional had recommended. I was pretty much 100% reliant on the PEG tube for well over a month - and I still lost a ton of weight. I have had it almost five months now but haven't put anything through it (besides water to flush)for well over a month. My weight has been stable for all that time so I should be getting it out very soon.

Hi Joann - welcome to the family. It's unfortunate your husband is having trouble eating this early in treatment. That happens to some patients. So, for him a PEG tube may be truly needed.

What's important to never forget, while on the PEG tube he needs to continue swallowing every day even if it hurts. It's easy to stop swallowing to avoid the pain and to rely on the tube for nutrition. But, doing so he can actually lose the long term ability to swallow, which puts him on the tube for life.

So, even if using the tube to eat, he still needs to drink water normally and force himself to swallow every day.

It will be bad for awhile, worst at the end of treatment until several weeks after treatment ends, then start to get better. The getting better part can take awhile. I was told treatment takes 7 weeks usually, and you feel bad for pretty much 7 weeks after treatment ends.

I don't want to sugar coat any of this; it's tough. But, I also don't want your husband feeling like once treatment is over he will start to feel better tomorrow or next week. It takes longer than that.

Now, that you know, you can better be prepared to help him get through this.

take care, we are here with both of you every step of the way.

Tony

P.S. If possible, get him to join the forum himself. Him reading the forum will make him think of questions he wants to ask better than if he gets all his information from you. It will lighten your load as a caregiver also.