Mom finished treatment 4/04. Chemo and radiation for 7+ weeks. It's been over 8 months now. Nutrition through a peg tube. She has trismus and very limited tongue mobility. She does her tongue exercises given by speech therapist, but doesn't feel it helps. She thinks the swallowing issues are actually worse than they were right after the end of therapy. She tries cream of wheat every single morning. Tries her best not to choke and ends up spitting out most of it. I think she's basicly giving up on ever eating again, because it's just not working. Any help out there?

That should have read 3/2/04 finished treatment. Sorry.

My heart goes out to your Mom & to you for helping her! Get her on this bulletin board. She'll find comfort & maybe some tips. I have a hard time with cereals, cold or hot. They make me cough! Soups that aren't too acidic, chili w/beans, mashed potatoes & gravy, anything with a sauce. I can now eat a burger or sandwiches if there's enough mayo & tomatoes! Most meats are hard to swallow, even after chewing & chewing. I CAN get anything down with enough milk to wash it down! Tell her not to give up. She will have to keep trying different foods till she finds things that work. I remember I kept trying to eat the things I used to & coughing & choking so much & being so frustrated I just didn't want to eat. It takes effort. Fresh vegetables steamed till soft with lots of butter & salt go down real easy, are delicious, & good for you. Last night for example, we had medium rare barbecued ribeye steak, fresh steamed asparagus w/butter, tomato & gorgonzola soup, garlic baghettes with lots of butter & milk! Yum, yum! The steak & the bread we're tough to swallow, but the rest went right down. I ate till my gut hurt! I have only been able to eat enough to give myself a gut ache recently! I'm not sure if that's good or not, but I can do it again anyway! Tell her to keep trying. Treat eating like physical therapy & just keep at it! It will get better! Erik

Jobeeg,

As Erik points out, eating is no different than any other physical therapy to regain muscle control. Not trying is synonymous to "use it or lose it". I eat a lot of spaghetti noodles and could even tolerate Ragu and stuff like that even though it is acidic. I struggled with Cream of Wheat, oatmeal, etc., and coughed and choked. I drank a lot of whole milk because it was thicker and because it had a bit more calories. It took about a year before I could drink more than a sip of anything and now can pretty much gulp several times. I cook my steaks more rare because they are a bit easier to swallow and yesterday I ate some pretty dry fried chicken with a little difficulty until I could gulp down some water.

Another thing I learned that helped was to take a good breath before I tried to swallow. I then closed off my airway until the food was completely down. At first, it would get stuck in my throat and I would either gulp for air and start coughing or my body would create a sneeze reflex and it would go across the room.

Tell your mother to keep swallowing stuff just for excercise if nothing else. There are some devices on the website for stretching the mouth muscles.

Ed

JOBEEG:
I am not a medical professional, but I have first hand experience. The primary reason we choke and gag is that we are, when we swallow thin liquids, aspirating the liquid into our lungs. Nothing thinner than apple sauce. Get creative with the blender. Don't be concerned with trying to eat. Radiation, even IMRT, damages the epiglotis and only time will heal those wounds, lots of time.
Darrell

hi jobeeg,

your mom's case sounds a bit like mine was.

eating treatment helped some,...
however the big change occured when i had my thoat streatched (twice). secondary radiation caused it to be about the size of a paperclip wire. it should be about dime size.

before the streatch, i could tell that things were tight because when i burped, air flow was restricted and the tone was high pitched. the docs had me do two barrium swallow proceedures. i think those were a waste of time because the results were never acted upon.

after i felt my throat had healed enough from the radiation, i got the streatch... that was the real beginning to eating again for me. previously, even liquids were a big problem.

i wonder if you mom has a similar problem?

cu,
larryb

Thanks so much for your responses, guys. Actually Mom is already a member here, though she hasn't checked in for a while. She's more of a lookey lou than a talking participant here, and I couldn't say much while she went through treatment because it was so very scary and I didn't want her to read all about my fears and anxiety here. Anyway, Uptown you described her symptoms well. She coughs, chokes from aspirating and sneezes. Also there's the fear of aspirating and getting pneumonia, and the discouragement because a proper swallow just hasn't ever happened yet.
I want to thank everyone on this board. You guys have been extremely supportive and informative without even knowing you were helping us, because we weren't real interactive. I found this place after Mom was diagnosed and I suppose only you guys could possibly understand what it has meant to me. Many times I cried in front of my computer and you guys were my lifeline. Thank you for being here. Thank you for fighting your fight and sharing it with the rest of the world.

Jobeeg, hello to you and you moma. first of all I want to say how proud I am of you for taking sucha interest in all this for her. My kids have walked away from me. It has all but broken my heart. I wanted to tell you that I too cannot eat. It may be a lot of fear on my side, I am so afraid that I am going to choke. I have done it so many times and it is so so scary when it happens. I had my surgery in Feb 04 and I am still on the feeding tube. Tho I would love to have it out, I must not want it bad enough beczuse I am not trying to eat like I should be. I am in speech and physical theraphy right now. My speech therapist is trying with all her might to get me going, yet she understands my fears with it at the same time. I can swallow with difficulty. I will keep you both in my thoughts and prayers,,, I will get there just not today. Always Miss Vicki

Vicki, for what it is worth, I think about you almost everyday and keep you in my thoughts and prayers along with everyone on this OCF Board. My speech therapist got me to eat a little at a time, she actually gave me the courage to try, cuz I was soooo terrified of choking. In fact, last Thanksgiving, I sat down to my Mom's usual Thanksgiving Feast (which is oh so delish) (couldn't eat much the prior year, maybe some mashed potatoes) and almost choked to death in her bathroom, I seriously could NOT breathe. Terrified everybody! I take it real slow and am able to eat almost everything now in small pieces! God Bless You, Vicki! One Day at a Time, is all we can ever do! Love, Carol

Thank you so much Carol. You are so sweet. I know it is going to be so hard for me, I am so so scared. I got choked like you did, I was alone at the time. Girl it really put the fear of GOD in me and I just cannot seem to shake it. I am going to have to just get it in my head and that's that. I want off this peg....My hole in my neck isn't closing at all...So that is going to take some more time...I guess that I feel so good that I want everything back the way it was...Can't blame me for that. You take care, Always Miss Vicki....I see that there is another Vickie on here........I was reading her messages before it hit me that they weren't mine...LOL...

Hi Jobeeg,

I have been trying to regain my swallow for two years. It is coming slowly, usually thick soups, spagetti-os,cream cheese, yogurt and puddings are easy to handle.I have also been able to eat thin sliced turkey or ham even in a sandwich of soft bread with mayo and tomatoes. Flounder stuffed with crab meat is light and moist and together with mashed potatoes is a good meal. I hope your mom attempts to eat even small amounts of food, it may well het her to look forward to eating again.

Hi Jobeeg
I'm 15 weeks out from surgery it's been hard but I'm eating again, like many of the posts already say, omelettes with butter, mashed potatoes with butter, pasta (very well cooked) with butter or cheese, max calories for minimum swallows.
Sunshine... love and hugs
Helen