still unable to eat

larry447

Went to my doctor yesterday and he showed me pictures of the
swelling in my throat caused by the radiation. This is causing
swallowing problems and as a result i have not eaten any solids
for 7 months. My radiation treaments were completed 6 months
ago howvever i was unable to eat a months before my treaments
were done. I have been doing the shaker exercises to help strengthen
the swallowing muscles. Up until 4 weeks ago i could not even swallow
a sip of water however now i can with little aspiration. My doctor said
he does not want to get my expectations up to high but told me he has
seen patients with more severe swelling who were able to have the peg
removed and eat normal. He also said some were not able to return to
normal feeding. The speech therapist has added a couple more exercises
to do in addition to the shaker that will hopefully get my swallowing
muscles working again. I was wondering if any of you survivors have been
through this type of rehab and what were the results. It is not real easy
going through these exercises especially with a trach in your throat and
a peg in you belly.
Thanks Larry

Hondo

Hi Larry

Can’t say I been through anything quite like that, I do have problems with the throat and swallowing but nothing like what you are having. I do hope the swelling goes down for you soon and you can get back to being your new normal you.

Take care my friend
Hondo

sweetblood22

Hondo said:

Hi Larry

Can’t say I been through anything quite like that, I do have problems with the throat and swallowing but nothing like what you are having. I do hope the swelling goes down for you soon and you can get back to being your new normal you.

Take care my friend
Hondo

I couldn't eat for 8-9
I couldn't eat for 8-9 months. I had two stretchings tho to get me to this point. (I had my peg for 18 months). I can't remember if you told us whether they could dialate you or not, Larry. I think my swelling must slowly, very slowly, been getting better because I haven't been stretched again and I used to have to finely mince my food and now I have been doing ok with just a dice and choking less.

sportsman

Eating
I guess I have about did everything I can do to improve swallowing. I was unable to eat after two weeks of radiation and had PEG put in after the fourth week of radiation. The PEG was my source of taking in nutrition for about five months. Once I started to attempt to swallow again I used Ensure and ate pudding. I did this to maintain my weight inorder to have the tube removed. I lost fifty pounds during my whole ordeal and now almost four years later have gained only about twenty pounds back. I have been to a speech therapist for the swallowing exercises, have been dilated a total now of five times and have also had Vital Stem theraphy. My ENT just shakes her head every time she sees me and does not really give me any hope of my swallowing improving. She also states that radiation is the gift that keeps on giving. It is no longer a pleasure for me to eat, now it is only a necessity. My wife trys to prepare all types of food that she grinds up through a processor just to see what I can get down. I fortunately still have taste buds but my saliva glands were burned up. Therefore though I have taste buds I do not have the saliva which enables you to taste better. I did have a trach after my neck dissection but this was removed before chemo and radiation started. Hang in there and definitely get all the information and help you can get. My prayer for you is for improvement so you can get rid of the PEG. They tell us that life after this terrible cancer is the new normal. Pardon my english but it ain't fun but I am still here.

larry447

sweetblood22 said:

I couldn't eat for 8-9
I couldn't eat for 8-9 months. I had two stretchings tho to get me to this point. (I had my peg for 18 months). I can't remember if you told us whether they could dialate you or not, Larry. I think my swelling must slowly, very slowly, been getting better because I haven't been stretched again and I used to have to finely mince my food and now I have been doing ok with just a dice and choking less.

Hi sweetblood22
Yes they were able to dilate me. The doctor went through bottom and top of the esophagus
and was able to open it. I thought when they opened the esophqagus i could start eating
some soft solids however the swelling is preventing that from happening. At first they
were unsure whether they could successfully open it. After failing the swallow test i
realized the real culprit was the swelling. It appears that it might take quite some time
for me to eat again if at all possible. My biggest problem right now is my confinement to
my house and limited activity.
Well sweets thanks for your response and i will pray that you continue to do well with
your eating.
Larry

larry447

sportsman said:

Eating
I guess I have about did everything I can do to improve swallowing. I was unable to eat after two weeks of radiation and had PEG put in after the fourth week of radiation. The PEG was my source of taking in nutrition for about five months. Once I started to attempt to swallow again I used Ensure and ate pudding. I did this to maintain my weight inorder to have the tube removed. I lost fifty pounds during my whole ordeal and now almost four years later have gained only about twenty pounds back. I have been to a speech therapist for the swallowing exercises, have been dilated a total now of five times and have also had Vital Stem theraphy. My ENT just shakes her head every time she sees me and does not really give me any hope of my swallowing improving. She also states that radiation is the gift that keeps on giving. It is no longer a pleasure for me to eat, now it is only a necessity. My wife trys to prepare all types of food that she grinds up through a processor just to see what I can get down. I fortunately still have taste buds but my saliva glands were burned up. Therefore though I have taste buds I do not have the saliva which enables you to taste better. I did have a trach after my neck dissection but this was removed before chemo and radiation started. Hang in there and definitely get all the information and help you can get. My prayer for you is for improvement so you can get rid of the PEG. They tell us that life after this terrible cancer is the new normal. Pardon my english but it ain't fun but I am still here.

Hey Sportsman
It seems like you and i have something in common and that is severe damage from the
radiation. I believe my damages may be a little worst than yours because my swelling
is also blocking my airway and i still have a trach. Thanks for your pray offering and i
will return the same for you. I really don't know anything about the new normal you
mentioned but i do know one thing that you mentioned it ain't no fun dealing with a
trach for 10months and not being able to eat for 7 months. Good luck to you sports in
your journey back to normalcy.
Larry

sweetblood22

larry447 said:

Hey Sportsman
It seems like you and i have something in common and that is severe damage from the
radiation. I believe my damages may be a little worst than yours because my swelling
is also blocking my airway and i still have a trach. Thanks for your pray offering and i
will return the same for you. I really don't know anything about the new normal you
mentioned but i do know one thing that you mentioned it ain't no fun dealing with a
trach for 10months and not being able to eat for 7 months. Good luck to you sports in
your journey back to normalcy.
Larry

I'm sorry you guys
It really made me so miserable not eating. I completely understand. I too couldn't eat by about my second week. I got so bad I couldn't even do liquids. I really was a person who live to eat and I was very depressed for months. They had to double my meds because frankly, I couldn't stand the quality of life I had with out being able to eat. It is still hard to eat and I would not say it's pleasurable, but I can live with this. I have like zero saliva. They took out my left salivary gland and then the other was fried with rads. My tongue still hurts and I can't really taste either. I am pretty sure that if you blind folded me I wouldn't be able to identify what I was eating. I try hard to be happy with my improvement because I am able to live without my peg.

I really pray that you guys will get better. Yes, rads just is the gift that keeps on giving. I had four more teeth filled today. I have like 8 more to go. They are all rotting out of my head cause I have no saliva. Hang in there guys. Larry I really didn't start eating 'real' food till over a year after rads. And that was like avocados, mushy macaroni salad, bananas.

timreichhart

sweetblood22 said:

I'm sorry you guys
It really made me so miserable not eating. I completely understand. I too couldn't eat by about my second week. I got so bad I couldn't even do liquids. I really was a person who live to eat and I was very depressed for months. They had to double my meds because frankly, I couldn't stand the quality of life I had with out being able to eat. It is still hard to eat and I would not say it's pleasurable, but I can live with this. I have like zero saliva. They took out my left salivary gland and then the other was fried with rads. My tongue still hurts and I can't really taste either. I am pretty sure that if you blind folded me I wouldn't be able to identify what I was eating. I try hard to be happy with my improvement because I am able to live without my peg.

I really pray that you guys will get better. Yes, rads just is the gift that keeps on giving. I had four more teeth filled today. I have like 8 more to go. They are all rotting out of my head cause I have no saliva. Hang in there guys. Larry I really didn't start eating 'real' food till over a year after rads. And that was like avocados, mushy macaroni salad, bananas.

about eating
Larry,
I had problems eating solid foods during and after radiation treatments but I never had any problems eating during chemo treatments but I had a meeting with the chemo doctor back in nov of last year and he told me he was very worried about my weight so he told me that he was going to place a PEG tube in me so he gave me a option either get PEG tube in or start eating solid foods. But when I met with the radiation doctor he wasn't worried about my weight at all. So after the meeting with chemo doctor I went home and forced my self to start eating again and I do not recommend you do that at all unless your comfortable on doing it.

Here is my best advice if you dont have any saliva take sips of water with your food to make it go down alot easier I found that trick from other members of this site. So far by doing that trick I was able to eat about anything and maintaining my good weight.

mixleader

Eating Issues
Hi, Larry. I really feel for you and I can't imagine how tough it must be. I had problems during rads with a sore/swollen throat, but I was able to keep eating and drinking even though I had to eat soft things for a few weeks. Hang in there and things should get better. Keep fighting and remember the SEAL motto: "The only thing worse than losing is quitting". Hang in there

Roger

klortie

mixleader said:

Eating Issues
Hi, Larry. I really feel for you and I can't imagine how tough it must be. I had problems during rads with a sore/swollen throat, but I was able to keep eating and drinking even though I had to eat soft things for a few weeks. Hang in there and things should get better. Keep fighting and remember the SEAL motto: "The only thing worse than losing is quitting". Hang in there

Roger

still not swallowing
Hi all. I've been reading these posts with interest. I completed my chemo/rad treatments in March 2010. I still cannot swallow anything, including saliva. I have had 2 attempted dilations and each attempt failed. At first, a standard tube was found to be too large so the ENT doc tried a pediatric size tube. That failed so he then tried to insert a fine wire which failed also.
I then had the procedure with a thoracic surgeon entering via the stomach and the ENT entering through the throat with a camera. They discovered the stricture was complete. Afterwards the ENT said my esophagus was a "dead piece of meat." Also, the damage from the radiation was so severe, my voice box is fused to my esophagus. Any attempt at surgical correction would result in the inevitable loss of my voice box. Since I cannot eat and there is no guarantee that radical esphageal surgery would be successful, I'm not willing to risk the loss of speech as well.
The doctors tell me I'll never eat or drink again. This is a very bleak outlook for me and I'm struggling mentally every day with this. I am back to work but it is very awkward having to find privacy to tube feed and our social life has pretty much ended.
I'm just wondering if there is any hope for someone like me and if others can share their similar experiences.
Thanks
Ken

sportsman

klortie said:

still not swallowing
Hi all. I've been reading these posts with interest. I completed my chemo/rad treatments in March 2010. I still cannot swallow anything, including saliva. I have had 2 attempted dilations and each attempt failed. At first, a standard tube was found to be too large so the ENT doc tried a pediatric size tube. That failed so he then tried to insert a fine wire which failed also.
I then had the procedure with a thoracic surgeon entering via the stomach and the ENT entering through the throat with a camera. They discovered the stricture was complete. Afterwards the ENT said my esophagus was a "dead piece of meat." Also, the damage from the radiation was so severe, my voice box is fused to my esophagus. Any attempt at surgical correction would result in the inevitable loss of my voice box. Since I cannot eat and there is no guarantee that radical esphageal surgery would be successful, I'm not willing to risk the loss of speech as well.
The doctors tell me I'll never eat or drink again. This is a very bleak outlook for me and I'm struggling mentally every day with this. I am back to work but it is very awkward having to find privacy to tube feed and our social life has pretty much ended.
I'm just wondering if there is any hope for someone like me and if others can share their similar experiences.
Thanks
Ken

Still not Swallowing
Ken: Sorry to hear about all your severe problems with swallowing. I am now about four years and two months post radiation treatments and still and probably always will struggle with swallowing. I have been dilated a total of five times now with what they call a balloon dilation. My stricture is what they call a upper stricture and probably will not get any better according to what my ENT has told me. Conventional dilation would not work on me as they initially attempted to do this at my local hospital. I have my dilations done at a teaching hospital Wake Forest Baptist Medical Center in North Carolina. I have tried everything to try to improve my swallowing including the dilations, speech theraphy, vital stem theraphy etc.. I am now at a point that it has been over a year since my last dilation. I have also severe problems with edema because of the lymph nodes in my neck being removed when my radical neck dissection was done. I have to experiment with different type foods in different consistencies to try to take in enough nourishment just to maintain my weight. I initially lost fifty pounds including pretty much all my muscle mass during treatment and have gained only about eighteen pounds back. My social life when it comes to eating is non-existent and I have not been out to eat in over four years now. I can eat in front of my family but just don't have the courage to go out in the public to eat. I am thankful and blessed to have a wife who has fought hard for me and does everything possible so I can have some normalcy in my life. I tell everyone I only eat to survive now and there is really no enjoyment. I often tell my wife I just wish I could get a shot if there was such a thing to provide me my nourishment. Once in a while I still dream about eating or think a lot about it when I see someone else enjoying their food or food commercials on tv but it has been so long now that these thoughts do not stay with me long. I just pray that they will find something that can eventually help you. I had the PEG feedings for about six months and just can't imagine the possibility of still having to do that. God Bless You, Larry in North Carolina

sue5749

Hi Larry
My husband is having the very same problems as you are. It has been a month since his last rad treatment. He has not eaten anything or any water for about 4 months now. He has a track and a j tube. We went to his ear nose and throat doctor today he put the tube down his nose and said that he still has a lot of swelling. My husband ask him if he should try to swallow a few sips of water he said "no" Do you have a lot of swelling on one side of you neck? My husband said he feels like he might not be able to breath. So scary! We had to go to the emergency room Sat because there was a lot of blood coming out of his track. his ear nose and throat doctor said that may have been because his throat got so dry???? Don't understand that? He has been taking breathing treatments. Change his inner tube about 5 or 6 times a day because of all the mucus. What to do? What to do? Hope things get better for you!

sweetblood22

klortie said:

still not swallowing
Hi all. I've been reading these posts with interest. I completed my chemo/rad treatments in March 2010. I still cannot swallow anything, including saliva. I have had 2 attempted dilations and each attempt failed. At first, a standard tube was found to be too large so the ENT doc tried a pediatric size tube. That failed so he then tried to insert a fine wire which failed also.
I then had the procedure with a thoracic surgeon entering via the stomach and the ENT entering through the throat with a camera. They discovered the stricture was complete. Afterwards the ENT said my esophagus was a "dead piece of meat." Also, the damage from the radiation was so severe, my voice box is fused to my esophagus. Any attempt at surgical correction would result in the inevitable loss of my voice box. Since I cannot eat and there is no guarantee that radical esphageal surgery would be successful, I'm not willing to risk the loss of speech as well.
The doctors tell me I'll never eat or drink again. This is a very bleak outlook for me and I'm struggling mentally every day with this. I am back to work but it is very awkward having to find privacy to tube feed and our social life has pretty much ended.
I'm just wondering if there is any hope for someone like me and if others can share their similar experiences.
Thanks
Ken

Still not swallowing.
Ken, I'm sorry to read this. I can understand why you wouldn't want risk losing your voice as well. I don't think I could risk it either.

My issue was more like sportsmans. A severe upper stricture, which they are hard to dilate. They went in from below and above with mine too.

I wish I knew of some advice for you, but I don't. Hoping someone has info that could help you.