Help - my dad is starving

kgill

Hi all.

I'm new here, but have bene reading your posts for a while. My 66-year-old father was diagnosed with esoph cancer 16 months ago. He had surgery 14 months ago to remove his esoph and part of his stomach. No radiation or chemo after the surgery. The problem is that he never stopped losing weight, even after recovering from the surgery. They thought it was because of a stricture, and they've done dilation twice, but it brought no relief. Last week they diagnosed a new tumor - it's outside the esophagus, and is pressing against his larnyx and thyroid. They plan to start radiation soon, and possible surgery after that.
The immediate problem is that my dad is starving to death. He's down to 122 pounds (from 174), because he can hardly swallow a thing. It either won't go down, or gets stuck and he chokes. He can't do liquids at all - for some reason, they are even tougher for him than semi-solid foods. My mother and I are desperately looking for things that he can handle - he's always thirsty, and is losing about a pound per day. Do any of you have any suggestions at all that might help him out? We're at the end of our ropes.
Thanks in advance for any and all suggestions. I feel so helpless through all of this - if I can get some new ideas for him, at least I'll feel as if I've done something to help.
- KGill

PS: Has anyone else had a second tumor after the first was surgically removed? And I wonder if this new tumor is still considered a primary site, or if it is secondary (and thus has metastacized)?

mrbt

Hi. Bruce here. EC survivor. Please check out "www.eccafe.org" Lots of information and links to some great support groups. Regards, Bruce

jennifer21

Wow- our problems are practically identical! My Dad (60) is down to 118 lbs after having surgery March 2002. He's been trying everything- the docts tell him to break his meals in half (eat half now, half later) This has not been working at all! He's scaring all of us. My mother and I first went online tonight to do some research and I just found your message. Sadly I am looking for the same answer as yourself and do not have any info, but it's nice to know my Dad isn't the only one so I thought you'd like to know the same. I will post anything that will be of asistance. I wish your family the best of luck- your father is in my prayers

jmt1220

I'm so glad I signed on. Also searching for anything that will help my dear mother-in-law who Feb. of 2002 was diagnosed with tumor at the esophageal/gastic junction. Surgically removed. No chemo or radiation. Like your dad, had 2 dilatations had trouble swollowing after partial gastrectomy. She too, has lost significant weight. Not suprised to lose some, but here we are one year later and still rather thin and eating still appears to be somewhat of a challenge. I'm sure some is physical , but do you think there could be a psychological aspect to it as well? With your relatives as well?? She is on Prilosec, which she says makes her nauseous, so this seems to be a contributing factor to her difficulty eating. She needs something to help with reflux. I'm ready to investigate herbal remedies at this point. Fortunately, her last scan in December was great.
Thus far, no evidence of more cancer. Any additional information would be great. Obviously, we are all struggling with watching our relatives
and their difficulties. Thanks!

cbecker

my husband had throat cancer last summer and had 40 aggressive radiation treatments which due to severe sores in his throat and mouth and a swallen throat was not able to eat or drink. They put in a feeding tube attached to the inside of his stomach. Peg tube. It is done surgerical and does not take long. Therefore they are feed thru the stomach. They can take water, medicine and a special nutrition Nutrical or some people use ensure. Ask your doctor about it. that was the only way my husband ate for 5 months. Also there is a new product made my Ensure call Prosure it is for cancer patients. IT helps for muscle mass, nutriention. Go on the web www.prosure.com and read all about it. MY husband unfortunately got cancer back in January 2003 spread to his lungs. Now on chemo and liquids only because his throat is swallen shut again. The chemo caused radiation recall on the throat. So the Prosure is helping maintain his weight and he has gained two pounds. This stuff is great. God's speed to all of you. Candy

cbecker

jennifer21 said:

Wow- our problems are practically identical! My Dad (60) is down to 118 lbs after having surgery March 2002. He's been trying everything- the docts tell him to break his meals in half (eat half now, half later) This has not been working at all! He's scaring all of us. My mother and I first went online tonight to do some research and I just found your message. Sadly I am looking for the same answer as yourself and do not have any info, but it's nice to know my Dad isn't the only one so I thought you'd like to know the same. I will post anything that will be of asistance. I wish your family the best of luck- your father is in my prayers

Jennifer, my husband had difficulty using his throat after throat cancer and radiation. They put a feeding tub (Peg Tub) and he got his nutrition that way. Have they done a barium swallow test to see what is happening when he swallows. That will show why the reflex problem. Also look on web site www.prosure.com This company makes liquid nutrient directed towards people with cancer. It is made by ensure. It has helped my husband trememdously. He went off the feeding tube last Dec. He was on it for 6 months. But cancer has come back and now in lungs so the chemo has made him not able to eat again. The prosure has help him maintain his weight and he has gained 2 lbs. Check it out and the feeding tube. Ask your doctor as well as the barrium swallow test. God's speed, Candy

cbecker

jmt1220 said:

I'm so glad I signed on. Also searching for anything that will help my dear mother-in-law who Feb. of 2002 was diagnosed with tumor at the esophageal/gastic junction. Surgically removed. No chemo or radiation. Like your dad, had 2 dilatations had trouble swollowing after partial gastrectomy. She too, has lost significant weight. Not suprised to lose some, but here we are one year later and still rather thin and eating still appears to be somewhat of a challenge. I'm sure some is physical , but do you think there could be a psychological aspect to it as well? With your relatives as well?? She is on Prilosec, which she says makes her nauseous, so this seems to be a contributing factor to her difficulty eating. She needs something to help with reflux. I'm ready to investigate herbal remedies at this point. Fortunately, her last scan in December was great.
Thus far, no evidence of more cancer. Any additional information would be great. Obviously, we are all struggling with watching our relatives
and their difficulties. Thanks!

JMT, have they tried doing a barrium swallow test to see how he is swallowing. also talk with dr. about a feeding tube (peg tub) it helped my husband for 6 months until he could eat again. now cancer is in lungs and the chemo has caused the throat to close again. also look up www.prosure.com made by ensure especially for cancer patients. has helped my hubby alot prayers and concerns, candy

jjm

I Highly recommend having a stomach PEG installed ASAP. I had one for 3 months because of my tumor which prvented me from swallowing anything but liquid. A PEG is a latex rubber tube inserted into the stomach about 3 " below the sternum. Ensure, NuBasics, etc, will provide all the required nutrition for your dad. God Bless. JJM

doru

Hi and i'm new here.Ihave esophageal cancer and spred and into the stomac for 9 cm.The illnes start in november last year but the doctors cheked me until one mont ago when they decided to start the chemoteraphy.I losted in this period 40 kg.After 10 days of chemo I started to be able to swallow.In 2 weeks I allready puted back 4 kg.If the tratament will work they will make me an operation after another 2 months (if the tumor will be reduced under 5 cm).I think this is the solution , chemoteraphy.I wish your father luck and I will pray for him.

griffinherbert

This is not a simple problem. Weight loss is common with radiotherapy, chemotherapy, and certainly following an esophagectomy. As an emergency measure a "J" tube that goes into the small intestine (feeding tube). These seem somewhat drastic, but in actuality they are very easy to manage. I had one for about six months. In one way they are great; I could put the most foul tasting medicine into my "J" tube bag and didn't have to swallow the stuff (ha). Through a feeding tube he should be able to both maintain and/or gain weight. After all is said and done he will have a small auxillary navel (ha). Talk to your doctor, very soon.....


Lee

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