need help swallowing

donna b

Just a quick note about me...tongue cancer with two lymph nodes affected.  Have had surgery, 37 radiation treatments and six Erbitux chemo treatments. Treatments ended almost six months ago. Recent PET scan shows that the cancer is gone! YEAH!  But, I'm still living on a g-tube and am getting so discouraged. The only things I can swallow easily are ice cream (or shakes), pudding, milk, and yogurt. Definitely not enough to stop my weight loss if I go off the tube feeding. Family and friends, as well as doctors, mean well with all of their many suggestions of what to try to eat, but they just don't get it. I have multiple issues...reconstructed tongue that doesn't work very well, limited saliva, screwed up taste buds, "tight" feeling throat, etc.

Has any one out there gone through the same treatments as I have? I so want to eat. Everything looks and smells so good. I do try everyday, but nothing seems to change. Any suggestions on anything that is not sweet, slides down easily, doesn't burn from spices, doesn't wash over to the side of the mouth with the reconstructed tongue. WOW, now that I write this I wonder if it's even possible. Only someone who's been through it truely understands the dilemma.

Thank you

CivilMatt

food

Donna,

We all understand, each of us had hurdles to get over.

My story is similar to yours,  scc, base of tongue, lymph node involvement, surgery, rads and Erbitux.

I did not have much trouble swallowing; I just could not stand the taste and feel of most foods.  From day one I tried everything, but no luck.  I wanted my PEG out so I proved I could get all the nourishment through protein drinks and smoothies.  I must have gone through a 100 bananas and 50 pounds of blue berries before things changed.  Then at 7 months into my drink fest, it all changed and I was back on the road to “new normal”.

I tried every idea my friends here at the H&N forum had to offer, but nothing satisfied me like a good smoothie.  I traveled around with an igloo cooler filled with water and protein drinks.  I did everything I normally did, except eat.  I ate supper at my parents’ home every Sunday i.e. a bite of chicken, a spoon full of potatoes and a few peas.  I heard it all about how and what to eat.  I once put a can of Crisco shortening on the table and said “this is what food feels and tastes like”.

However you make it with food the path is your own.  Funny thing there were food stand outs from the beginning, sweet corn and sweet (artificial) ice-tea both tasted great, go figure.

Good luck,

Matt

fishmanpa

The Trouble With Eating

Hi Donna,

I haven't been on the boards much but I saw you post and wanted to respond. I didn't have the same exact treatment but certainly have had my share of surgeries and issues. At a year post treatment, I can eat most anything. However, meats are difficult and come to think of it, everything is still difficult. For me it's "chew, chew, sip swallow" as I have to have a sip of water with nearly every bite of food with the exception of ice cream and such. I do swallow exercises daily and while I know they are helping, what I deal with is not unusual. I have a barium swallow study coming up and my speech pathologist wil access my swallowing. 

There's a post in the Superthread that has swallowing exercises and another with soft foods to try. It's a known fact that we can lose our swallow years down the line so it's important to work those muscles on a regular basis. Start slowly and work your way up. I find having gravies and such helps in getting the food down. I recall that condiments like ketchup burned like hell for a while. Now, I can even do some mild Thai food Patience is the key. Try not to get discouraged. It takes a good year or more to get to the "new normal". 

One more suggestion would be to blend foods that you want to eat. I purchased a Vitamix blender and was able to eat some foods that ordinarily I couldn't swallow early on. You still get the taste although the consistency isn't what you're used to. The Vitamix is a beast of a blender and you can get a reconditioned, fully guaranteed model for about half price. all you need is a note from your doctor It's one of the best investments we made. We use it everyday for a breakfast smoothie.

Positive thoughts and prayers

"T"

Ingrid K

You are doing GREAT

Hello Donnab:

First off, you are doing so good, being just 6 months past treatment !!  I know you want to eat real food, but I had the exact same surgery and treatment as you did, and my surgeon told me b4 the treatments ended that I would be on the feeding tube for 18-24 months.  And he was right...part of the problem is that without our "original" tongue, our prosthetic tongue does not know how to push food around in our mouths so that we can swallow....it takes about a year to get the prosthetic trained to do this.

You will read a lot about folks who did not have the feeding tube that long, but they had different Head & Neck cancers--not involving the oral tongue.

And then there is the issue of taste buds....most taste buds are located in our tongues....I lost 75% of my original tongue and countless amounts of taste buds....So, Matt's example of the can of Crisco.....I can identify with that.  Lots of things had no taste at all and if they did--it was not pleasant.

Definitely look at the Superthread at the top of this discussion page.  Many many good tips and recipes on there.  There is a MINERAL BROTH on there that many used to stay alive.,

So, don't rush the eating solid food part of your recovery......but keep swallowing, water, ice tea, yogurt, ice cream.

Keep up the good work !

 

debbiejeanne

donna, i didn't have the

donna, i didn't have the problem with the tongue, i just had no appitite and couldn't eat much when i did eat.  i had laryngeal cancer in 8/09 and had 35 rad tx.  then 2/12 had a recurrence and had total laryngectomy.  i still cannot swallow like normal people.  i have to cut pills in half and sometimes 3rds.  i am always the last one done eating because i have to chew, chew, chew, chew and then chew....lol.  i'm sure having surgery on your tongue will take a little extra time to the eating process but you will be able to eat eventually.  i'm sure others who had tongue surgery will chime in and tell you how they did it and how long it took.  just don't give up and be patient.  anything to do with recoverying from cancer takes time!  you will figure out a way to eat.  praying for the best for you and that you're able to eat soon.

dj

wmc

Mine wasn't the same.

Didn't have the same thing but needed to put on weight real bad and had to be on liquid only. Cream of Chicken soup. Before you laugh, it has twice the cal. as chicken noodle and you can eat that on a liquid diet and you can't have the noodles. It has 300 cal per can and I had four to five a day, now add pudding and milkshakes and I hit 3200 cal.  It worked for me. Good luck.   I still have one can a day.

wmc

FRONT AND CENTER

Eating is laborious

Hi Donna,

I can totally relate to how you're feeling.  I'm a little over 2 months out of treatment and all I want is to be able to eat.  Eating is laborious; so much effort just to get down a few bites.  I have to take my time and I prefer to eat privately. 

I've discovered oatmeal to be easy to get down, it's filling and it's good for you!  I add brown sugar and half n half.   I've tried cereals but the milk stung my throat.    Everyday is different and some foods will work one day but forget it the next.  Totally frustrating.   If you do try the cereal, make sure you let it get really soggy!

Mashed potatoes with gravy were good for a bit.  Scrambled eggs or quiches were good a few times.  And hard boiled eggs were ok for a spell.  Just remind yourself that you LIKE the food when you're eating it.  The process of eating is entirely different now so remind yourself you liked it and you need the nourishment can help it get down.

The best news?  It will get easier!  Congrats on 6 months!
Kelly