Hi,

Name is Hank. Diagnosed in March with Laryngeal squamous cell carcinoma, HPV16+. Took a while to get a firm diagnosis, PET showed hot nodes, lymph node biopsies and resection pathologies showed negative. My team decided to treat it aggressively anyway. Currently about to start third week of treatment. 33x Tomotherapy and 7 weeks of cisplatin. Starting to get side effects. Swallowing is becoming difficult. I am dreading getting a peg.

Been looking around the forum and want to let you know how much I appreciate being able to see all the experiences and encouragement.

Welcome, Hank! So glad you found this site. There's a lot of information on getting a PEG both pros and cons. My son did not get it but he did have a rough time with sores in his mouth. You can look up previous posts by going to the search box (upper right of this page) to see what others have done or recommended. One thing I've seen recently are posts about the use of Manuka Honey which seems to really help some people with mouth sores during radiation, but of course anything that goes into to your body should be checked out with your doctors to make sure it does not interfere with anything else they are prescribing or giving you or that you are taking (even vitamins!). Let us know what's happening with you.

Welcome to OCF, Hank. Im glad you have found this forum. There is so much info here and also on the main OCF pages.

The PEG tube is a hotly debated subject on the forum. You will hear many pros and cons. You need to make your own decision about weather it is a tool that you will take advantage of to get thru this. No matter what your decision is, you still must keep swallowing several times per day, every single day. Personally, I am pro PEG. Why make things harder on yourself when there is something that will help you available. There is also a more temporary tube that some members have used. It goes thru your nose. Whichever way you decide to go is up to you. Not one of us who had a tube wanted to get one but it was necessary so we got it.

Make sure that you are keeping up with your nutrition. This plays a huge factor in how well you will get thru this. Make sure you get a minimum of 48 oz of water and 2500+ calories per day. The more you can get the better! Dont think by shorting yourself one day its ok, it will only get you into a downward spiral where you will begin to struggle. Push yourself to get extra calories and water every single day no matter what.

There are many helpful members to give you advice and support to help get you thru this phase of your life. Be positive! That also makes a big difference in how you feel.

Best of luck with your treatments!!!

welcome Hank. If you really don't want the peg, maybe you should see a speech therapist to keep your swalling muscles up. I ended up going to one after tx to re-learn how to swallow as I went with the peg. I couldn't even swallow pills, they had to be crushed and put down the peg. Tiny sips of water were about all I could manage. But there are a lot of people who make it through without any tube so it can be done. Good luck to you, and if you can still manage solid food, keep piling it on.

Welcome Hank. I also went with the tube and could not swallow for a few weeks after treatment. I would try water and I would just cough it back up. Now I can eat just about anything if I get it wet enough.

Hi Hank.
Welcome. My husband was very uncertain about the tube and had an aversion to the whole idea. He decided to get it. We flush it every day and only use it now when he is too fatigued to eat. He is swallowing. I found , from the forum, Carnation nutritional drink. It has 560 calories in one can. He has at least three a day, some Ensure for a change of pace and small amounts of food all day long. I have learned from this group and his docs how crucial it is. Good luck. We are in week 6 out of 7 and one chemo left. Everyone supported me a great deal. This site is filled with angels. Oh and take care of your teeth.

Thanks for the tips. The biggest problem right now is that I feel like I am gagging when I swallow and stuff doesn't seem to want to go all the way down. I have chemo/rads tomorrow, I'm gonna try and talk to me RO about it and let him know it's becoming a problem. I can force the swallow so far, but it's starting to get hard and this is only the beginning of week 3. I also seem to be having a little pain further down in my chest when I swallow. ugh... this is not going to be pretty.

Welcome! Sorry you have to be here! Are you still eating solids or liquids only ? If you're having trouble with liquids then that really is an issue - if it's foods try supplementing with ensure or the carnation - I lived on ensure for about three to 4 weeks. Had a peg but didn't use it - try to swallow fr as long as you can even if it's just fluids - good luck! You can an will get through this fine. It's not easy but you can do it. Glad your nodes tested negative!!

Still eating solids although I have downgraded myself to to softer foods as of today I noticed. Mashed potatoes and mac n cheeze type stuff. I love steak but avoided it. Swallowing is difficult but I can do it. My main issue is the gagging feeling. I can force through the pain of swallowing, but this gagginess is buggin me pretty rough.

There is an alternative to the PEG and that's the nasal tube. I had one post Tx and it did the trick. No surgery just feeding the tube thru your nose and into your stomach. Took less than 2 minutes and no pain. When I was advised I could do without I pulled it out myself.

Hank, good luck in your treatment. I just finished Tomo radiation end of May for cancer of the larynx. I can't say enough good things about Tomo. It spared my salivary glands. I had a difficult time with swallowing but forced myself to even though it hurt. I did softer foods, small bits and got it down. Week 4 and 5 were the worst and three weeks after rad treatment, but I got through it with no peg.Lost my voice for a long time but it has come back in the last 3-4 weeks. My follow-up CT scan showed no more cancer invasion.I did not do chemo because there was no invasion of lymph nodes.

I agree with the others. My husband was trying to eat all through and did until the gag started at week 5. Try soft, moist stuff and small amounts often. He eats all the same things but swallows each day. The Carnation and Ensure are saving us. Lots of calories and still swallowing. Just have to change your diet. You can do this.

I think that patients have a variety of coping strategies. During the worst of the mucositis, mouth sores, etc., my husband was happier (less miserable) with three 'meals' - a homemade protein shake morning and evening, and a couple of cans of Ensure at work midday. That way, the nutrition was done as quickly as possible.

If you're still eating solids that's good. Even if they're soft. Rads causes swelling so some difficulty is to be expected. I felt the tightness and swelling from the outset. Just keep doing what you're doing. If it gets too hard to do solids do the ensure type stuff until you can go back to solids. good luck!

My husband's menu consists of two soft boiled eggs in the AM with Carnation VHC. At mid morning two Ensures and then for lunch an omelet with an egg and melted cream cheese with a Carnation. When he get home from treatment he has three or four graham crackers dipped in milk until thoroughly soggy and then another Carnation. Before bed he has Cassie or Essiac (however you want to say it) tea. It is a wonderful tea that combats cancer cells. Same thing everyday but he is swallowing and getting the calories he needs. Good luck

Thanks for the advice and the support. It really helps to come here and see that people have been thinking about me enough to post and lend advice. Soreness has been a bit better today actually, so thank god for little favors.

My swallowing and soreness have improved some for some reason yesterday and today. I am thinking that the mucous issues combined with some postnasal drip of thickened stuff may have been the primary culprit at this time. Trying to stay hydrated. Freezy pops help a lot!!

Drink up Hank. And swallow what you can when you can, but keep swallowing. Organic yogurt is a favorite right now for my Dad and it seems to keep the excess down for him. He does not like really cold things, they burn, as do hot. Cool works...everyone is different.

And please don't sweat the tube, it is temporary. My Dad's shunning the tube too, and that's ok, there are no bonus points either way. We've talked with many people on this, most pegged, some used the nasal tube, several said no to it, none have a tube now and all felt their choices to tube -or not- were right for them. You'll know. Keep doing well!

Hank, try eating with sip of water, it will help you swallow. Soft-serve ice-cream will bring relief to the mouth-sores. Keep up with your weight, it may be difficult but you can do it.

I'm doing ok this week. Seems like a little pain management goes a long way. I also think that some post nasal drip was causing the majority of the problem. Swallowing is harder, I feel like things get stuck and so forth but I am managing to eat at a relatively normal level. No real weight loss or anything.

Sounds like you are doing very well so far. Keep up the good nutrition and hydration as it will help you get thru this easier.

Please add a signature when you have time. Its found under the 'my stuff' tab. Click on profile then scroll to the bottom and type in the white box. It makes it so much easier getting to know you when you have a signature.

yea had been meaning to do that with the signature thing. thanks for the reminder. =)

Oh and I just want to mention that right now I am eating alfredo macaroni goulash and it tastes great and I am swallowing it pretty good. I feel fed and pretty good right now. =)

What a rollercoaster this is.... sheesh

It's good to hear that you're feeling pretty well. Hang in there!