Hi. I am new to the forum. I was diagnosed with cancer of the epiglottis (the upper part of the larynx), stage 2, in August 2010. I began treatment at Dana Farber Cancer Institute in Boston, MA, at the end of September because it was a center of excellence. While there, I completed 35 radiation treatments and five low dose chemo treatments (because of the size of one lymph node they were worried about.)

I live in upstate NY, and there are no support groups for throat cancer. I am hoping to communicate with people who are going through or have gone through what I am going through.

My biggest concern right now is eating. I have a stomach tube, but have forced myself to eat something every day, and I supplement it with cans of nutrient rich foods through the tube. The biggest hurdle I have is that almost all food burns going down my throat. I cant eat chocolate or sweets, or anything with sauces--it either burns, or gets stuck in my mouth because of the lack of saliva. I also have a hard time eating more than 3 or 4 bites of anything, because I feel stuffed (like I just finished a thanksgiving dinner). I also have coughing fits at least once in a 24 hour period (and have had as many as four) where I hack until I cough up blood. My body doesn't seem happy until I cough up blood. My drs. say this is a normal part of the healing process, and to take OTC Tussin and the oxycodone medication they prescibed for pain, every four to six hours, which I do. But I know the raw throat is contributing to the burning when I swallow. I really need to go back to work in March, but I can't while I am still on pain meds, and I really want to get the stomach tube out. Any suggestions? Is anyone going through something similiar, or has been through it? I appreciate all feedback, and thanks! --Gail

Hi Gail!

Welcome to OCF, glad you found us, sorry you had to!

Most of the survivors here that have had rads to the head/neck area have had similar experiences...don't worry about it much my dear, it will get better!

Since you have a PEG, do yourself a favor and use it until your throat heals a bit more from the radiation burns. I understand wanting to have the PEG removed, I had mine for well over a year before I had it taken out.

I'm going to guess that the coughing fits are more then likely brought on by aspiration. Radiation treatment to the head and neck can/will cause dysphasia (difficulty swallowing) which can lead to aspiration (stuff going down the wrong tube) hence the coughing fits. It get's better, it may not get to where you were before rads, but you'll learn to work with it. Myself, I have to drink something when I eat anything. I try to eat solids everyday as well however the majority of my diet is Ensure/Boost Plus w Protien due to the various issues with my swallowing mechanisms.

Do us all a favor and write out a signature similar to mine w/ diagnosis, treatments timeline etc...it just helps us answer ?'s and get to know ya better!

Welcome to OCF, we are here for you!

Hi Gail

My Alex had cancer of the tonsil and base of tongue (BOT) with some lymph node involvement. He finished chemo/radiation on the last week of August so is working with similar timelines to you.

What you are experiencing is very similar to Alex. He coughed till he threw up and like you, his body didn't seem happy until he did. But the feeling full, have to push to eat, tastes wrong or burns... - all the same complaints. However, you have persisted where Alex couldn't. Alex has always been skinny and eating has always been way down the priority list. He also had other issues and long way to come back from which is too much to detail here.

We had hoped Alex would be able to go back to work in January so I was really worried when he went to the doctor in Dec and got another medical certificate until March. Then damn me, if he didn't go for a visit with his boss and accept his job back part time 2 weeks later!!

This is how Alex has improved:
Month 1 - September: felt like crap, couldn't eat and even the PEG was a hassle - 1 day good, 1 day bad
October: realised he had gone a whole week with only 1 bad day. Zero will to eat. PEG feeding easy, oral swallowing too hard. Food tasted yuck and what tasted ok (sweet) was too hard. Well enough to get fitted for dentures and suspended all attempts to eat citing lack of teeth as being the problem.
November: teeth fitted - still unable to eat more than 1 mouthful saying he had forgotten how to chew and his tongue wouldn't work properly. Food tasted wrong and some made him nauseous. No real interest in food. Also had to work out his new teeth and manage with no saliva. Good days were a week at a time with maybe 1 day bad. BTW Bad constituted feeling blah, severe fatigue, unable to get out of bed, the coughing and vomiting thing, ?depression/fear for the future/frustration at apparent lack of progress.
December: Started talking about renovations (actually "doing" was too much even before cancer :/), problem solving, doing little jobs, organising his own life instead of waiting for me to do it. Good days were 2-3 weeks with 1 bad day. Return of interest in cooking though not in actually eating. Would force 2-3 mouthfuls only if I harrangued him. Sat at the table with plate of food on Xmas day and didn't even pick up a knife and fork. Scared to go back to work, fearful of failing or letting the bosses down with a "bad day". Middle of month got another medical certificate. Started on anabolic steroids end of Dec to gain weight and improve appetite/taste.
January: Expectation of bad days is 1 per month, still very tired and pathetic at eating but had 2 baby dim sims last Saturday night and mood was positively buoyant! He assures me he is eating mostly non or quick to cook stuff (yoghurt, eggs, dairy drinks) when I am not there - hmmm. Strong cooking smells seem to destroy his will to try to eat. Starts back at work next week for 25 hours per week spread over 5 days.

The wins are slow and when you are living it, it feels like no progress at all but there has been improvement. In September, I was terrified Alex would die, or that he would never work again and that nothing would ever be the same.

Today, Alex is off doing his own thing and I haven't given it a thought, he goes back to work next week, we are talking about what needs to be done next week, next month and next year, and tonight we will go out for a couple of hours. Eating is still an issue, the PEG is still there but he is slowly gaining weight thanks to the steroids. He is currently heavier than he was when first diagnosed although still borderline emaciated and 10-15 kilos underweight.

By the sound of your post, your will to improve is very strong and progress is likely to be faster than Alex although probably not as fast as you want it to be(never is). If you were the sort of person to keep notes on your weekly activities and feelings, I bet you could look back and realise how far you have already come. Can you be back at work by March? Yes!

Gail:
Welcome to a plethora of awesome information to help you through. There are so many threads of information and people that have been there, willing to help. I am going through an issue right now (Minute in the big scheme of things) and I tracked board information all the way back to 2006, and it all helped. As far as the "Burn" I had an issue with most everything following treatment. It will ease up with time. Dairy was an enemy for a long time and I learned everybody's different as there was a lot of posts here talking about the "Calming of dairy (milk, cottage cheese, Ice Cream, etc), so give it time, experiment, and be patient, but DON'T GIVE IN OR GIVE UP!
Keep drinking, eating, use lots of water with everything and you will continue to improve, but challenge yourself.
As far as the coughing, try keeping elevated some when resting/sleeping and experiment with using a humidifier to help keep yourself opened up. Not sure it will help you but couldn't hurt either.
Once again, Welcome
Steve

Hi Gail, welcome to OCF. There arent many support groups for oral cancer patients. You will find tons of online support here. It takes a long time to recover. It cant be rushed. The better your hydration and nutrition, the faster you will recover. Shoot for 2500+ calories and 48+ oz water daily, even more is better. Here is a list of easy to eat foods to try. Relearning how to eat is another hurdle that takes a while to overcome. Best wishes with your recovery.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Gail, welcome and sorry you have to be here... but it's a great place for support and information so you've come to the right place.

Everything you're undergoing sounds normal to me. I had many of those same issues and even now, nearly 20 months out of RT, I'm still dealing with throat pain, constriction, stomach upset, swallowing issues and numbness.

David CPA, one of the top veterans and most knowledgeable posters here, has said it takes 2 full years to recover from throat radiation and I can testify that in my case that's turning out to be true.

So hang in there, try and take as much of your nutrition through the tube as possible, keep swallowing water and lots of it, and keep us posted.

It's hard to comment on the going back to work issue. That's different for all of us. I finished rads at the end of May and didn't really feel up to working until October, part time, and I'm a writer! So I wasn't lifting anything but my fingers and, hopefully, a few brain cells...

Did they give you a numbing agent for the sores in your mouth and throat? I used viscious lidocaine... which helped somewhat. Ultimately you just have to tough it out until the irritation subsides.

Hang in there, we're right there with you!

David 2

Welcome to our home Gail. As you will learn, ask questions and be prepared to force the issue with certain foods,. Yep , it will hurt and make you want to say forget this, but don't. Everything takes time and this disease has to be near the top of the list. Just do your best and then a little bit more as you proceed thru this journey.I went from much pain and torture to It's easing up a little and then back to the Damn this hutrs stage. I'll take whatever comes and listen to our family in OCF as they are always in the know about what is best. Most have been there and done that. Keep us posted.

Welcome Gail. Everything you are expessing is normal to our little band at OCF. Eating is a constant question and problem. Do not get that PEG tube removed too soon. Just use it. I had mine removed too soon and continued to loose weight long after treatment was over. For me 20+ months out of treatment, my diet is still very simple. Eating is something I do because we all have to eat. My desire for food is just not there. I eat when the clock says it is time to eat. I used to me cranky about the fact that nothing tastes like I remember - but now I recognize that food is just food; it is there to sustain us. Find those things that are easy to eat and enjoy them. Don't worry about pressuring yourself into eating all the stuff you used to eat. Supplement your diet with calories from Protien shakes and liquid nutirent drinks. Make sure you get enough calories. It takes time to find your new normal. You will find it. Just relax and take it a day at a time.