Seeking understanding

[Lois Ricketts]

I was diagnosed with non-small cell lung cancer at the end of January 2004. What brought this to our attention was problems with speech and swallowing. The physicians have determined the tumor which is located in the upper left lung has disturbed the nerve to the larynx causing the left side muscle to be paralyzed in an open condition. It is still unknown what has caused the problem with swallowing. Because of the aggressive state of the tumor it was decided to treat it with both radiation and chemotherapy. The result has been a 50% reduction in the tumor size but an irritation of the esophagus which made swallowing painful and almost impossible. I became so dehydrated and undernurished that they placed in the hospital for two weeks. Still I am having problems with intake. All treatments are on hold until I'm strong enough to accept chemotherapy and future radiation will be more directed if the tumor is still in its current size and location. Surgery is not being considered due to location and involvement of the nerve and the bridge of the aorta. Has any one experienced swallowing problems and how did you address it?

[Fay A.]

Dear Lois,

Many folks here have had radiation treatments, and they can tell you the things that worked for them. I want to tell you of a few folks who have taken a slightly more aggressive approach to nutrition and hydration during radiation treatments.

These folks were unable to eat and drink properly during radiation, even after having received a number of medications and preparations to try. They chose to have a Gastric Tube (NOT the Nasal Gastric Tube) put in surgically to keep them alive while undergoing radiation. One gentleman will be celebrating his third year as a survivor since undergoing such. Another is one of our members, and he is currently undergoing therapy.

It's what I will chose to do if I find myself in this situation.

[kimblanchard]

My husband had problems swallowing but he just kept going, no matter what. He used Magic Mouthwash, which numbed everything for 5 minutes and then he ate or drank what he could. The doctors know about Magic Mouthwash, it is prescription of benedryl, mylanta, and lidocaine. It didn't help a lot but it helped. Some days he drank Ensure or Boost and didn't want that but forced himself. Pudding, ice cream and popcycles went down easier for him, too. Yours sounds maybe worse than his but maybe some of this will help. The feeding tube has been used by many, also, as Fay A said. Jim had 35 radiations - the problem eased as soon as the radiations stopped, it was probably significantly better in two weeks.

By the way, his problem and treatment were similar to yours and he is doing okay and we are enjoying a lot of this Spring together. It isn't easy but it is worth it, at least it is for us right now.

Best of luck and stay in touch.

Margaret in Iowa

[-Cheryl-]

LOIS,

I had radiation and chemo together too. It was tough. I dropped 15 lbs. The mouth wash worked for me for about 5 min. too. Long enough to get a half of sandwich down me. My doctor told me that if I continued to lose weight he would put a tube in me, I sat at the table and tried to eat for atleast an hour once, my husband was there cheering me on. He went out and even got me stek and lobster, but to no avail. The dehydration did send me to the ER for an IV. DRINK DRINK, DRINK!!!! Water choked me. Try mixing something in the water to make it thicker so you won't choke on it, PM me if you want a list of foods that helped me. I threw up pretty bad for about a week when my stomach got radiated at the top of it. Margaret ad Fay had some great advice. I have read on here about a few people who had stents put in to open up their esophagus. Ask the doctor abot it? Hopefully this is from treatment, and not permanent.

[Snowflake]

Lois,

I had radiation to the center of my chest (my tumor was in the bottom of my right lung) and it caused issues with swallowing. My guess is that your case is a little more involved then mine, but here's some of what I had to do:

I drank liquid Aloe Vera - a shot of it three times per day (at most or the diarrhea kicks in and there's more dehydration). This was while swallowing was "okay", but uncomfortable.

As treatment went on and swallowing began to hurt, the shot of aloe vera was followed by Carafat (and believe me, that crap is NASTY). The double team soothed then coated.

I found that things I ATE (i.e. Double Stuf Oreos) went down easier with chewed food and saliva than the milk chaser. My thought is that when chewing, the actual SIZE of what is swallowed is much smaller than what is taken in a swallow of liquid. Thick is good...hard things that scratch (tater chips, peanuts, etc.) are bad.

If you start shedding pounds and don't have the "winter flab" I carry all year, your doctor needs to be made aware. Read up on symptoms of dehydration and be alert. I don't know about the feeding tubes, etc., I haven't "been there".

All my best,

Becky

aka Snowflake

[MO_Sugar]

I had major problems with swallowing (lost 70#) but they went away a couple of weeks after treatment was done. Carafate and the Majic Mouthwash helped some but I mainly ate room temp soups, mashed taters, jello, soft foods. I made sure to drink at LEAST 2 liters of WATER a day (usually 3 or more) to avoid the dehydration.

Prayers of healing sent your way.

God Bless,

MO

[mhutch1366]

Lois,

I hope you find a way to keep hydrated and fed through this.

Surgery? I had successful surgery from Dr. David Schrump at national institutes of Health, National Cancer Institute, and I know he dissected out a lot of tumor from around major nerves and blood vessels in the upper left part of my chest. He is with the Surgery Branch, a thoracic surgeon. I would at least ask him for a consult/second opinion about the surgery esp now it's shrinking....

Small mouthfuls of things that are not liquid, but soft, like applesauce and yogurt will likely go down best.I had a lot of trouble swallowing just after the surgery.

Good luck to you, and we're here if you need us.

prayers, always,

XOXOXOX

MaryAnn

[jamie]

Lois,

My dad recieved radiation to his throat as a percaution, and he like you, couldnt swallow anything. He avoided any beverage with bubbles, or that was thick... (pretty much all he drank was water). As far as food, all he was able to eat was pound cake and rice. After finishing radiation, all his symptoms left, and he's back to normal. Just eat as much as you can, of what you can. You have to keep yourself healthy. Just take it slow, and try different things.

Best of Luck

Jamie