difficulty swallowing after radiation for throat cancer

24

Comments

  • bobs95148
    bobs95148 Member Posts: 2
    #22
    amy_evan2005 said:

    esophegeal dilation
    Took me until today to finally get a nurse to call me back, but after my conversation with her after she told me the Dr. was going to Venezuela Friday for Christmas & she wouldn't be able to see him until after the first of the year. Must have done something because after she went back to talk to the doctor I received another call to tell me they got him in @8:15 in the morning with an upper gi specialist to dilate his esophagus.

    I know it's short notice but I'd appreciate any advice for this as what to expect. Going on line now to see what I can find. Will check back in little while.

    thanks,

    Amy & Evan

    Trouble Swallowing
    Amy: I just joined this group today and was curious how the esophegeal dilation went. My situation is very simular to your husbands. It's ben 2 months since the treatments ended, but I'm still unable to swallow. When I try to swall something I "cough" it back up (more like an attempt a vomiting). I also have quite a bit of mucous although much less now, I wake up about every hour to spit and I cough up small aounts of blood. I'm seeing my ENT on Monday and I'll keep you posted.

    Please let us know how your husband is doing.

    Bob
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #23
    bobs95148 said:

    Trouble Swallowing
    Amy: I just joined this group today and was curious how the esophegeal dilation went. My situation is very simular to your husbands. It's ben 2 months since the treatments ended, but I'm still unable to swallow. When I try to swall something I "cough" it back up (more like an attempt a vomiting). I also have quite a bit of mucous although much less now, I wake up about every hour to spit and I cough up small aounts of blood. I'm seeing my ENT on Monday and I'll keep you posted.

    Please let us know how your husband is doing.

    Bob

    welcome
    Dear Bob,
    When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
    There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
    He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
    Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

    Thanks & good luck Monday!!
    Amy & Evan

    P.S.
    Have you had a Barium Swallow Study yet?
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #24
    dream123 said:

    I too have difficulty swallowing To AMY AND EVAN
    I completed 35 treatments of radiation and 5 chemo treatments on May 12 2009 and I have difficulty swallowing, its been 8 months. I have an appointment with the doctor that put my feeding tube in. The doctor will exam me to see if I qualify to have a Flexiable Eating Exam of the Swallow. FEES for short.This exam will show what happens when I swallow, answers why some of the food depending on its texture when I swallow comes back up and through my nose!

    I too have mucus coming up after I have my can of Peptamen ( 6 cans daily). The milk ingredients I suspect causes the mucus. The oncologist nurse told me to drink more water through my feeding tube. As a routine I drink 2 cups of water for each meal, which helps cut down on the mucus. When I eat soft foods (puree) there is no mucus because its usually baby vegetable puree foods.

    I am treated by a Speech Pathlogist for my swallowing. My insurance will cover 12 treatments and he tells me I should be able to eat solid foods that's why I am going to have the FEES to help assist to get to my goal (eating solid foods).

    Keep in touch with me and by the way my cancer was at the base of my tongue where a tumor was shrinked after the radiation and chemo treatments. I see my ENT every six weeks and will be scheduled for an Annual MRI sometime in June 2010, to see if I continue to be Cancer Free.

    Bless you and your Hub. Time is our friend to heal, please keep in touch. My email is howglows@yahoo.com
    Hope to hear from you Dream123

    Dream123,
    I have attempted
    Dream123,
    I have attempted to email you & it says it is not correct address. Here is my e-mail address, amy_evan2005@yahoo.com. Mail me something so it will be in there right.

    Thanks,
    Amy
  • bobs95148
    bobs95148 Member Posts: 2
    #25
    amy_evan2005 said:

    welcome
    Dear Bob,
    When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
    There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
    He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
    Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

    Thanks & good luck Monday!!
    Amy & Evan

    P.S.
    Have you had a Barium Swallow Study yet?

    Swallowing
    Hi Amy:
    Thanks for your reply. I do have a feeding tube, and I'm using Isosource. Ocassionaly my stomach gets upset after about the 5th or 6th can (the Nutrionist says I should be using about 7 cans a day but I stop after 6). We're almost identical. I get similar responses about the swelling etc. But I think in my case it's still a bit early (about 2 months since the treatments stopped).

    I haven't done the Swallow Study yet, but I think they're about to get a speach therapist involved. If that doesn't work, I think the next step is the Swallow Study.

    I will check out the other sources of information that you mentioned.

    Thanks for your reply and I hope your husband gets better soon.

    bob
  • VaTad
    VaTad Member Posts: 1
    #26
    Nidociv said:

    Swallowing
    Hello Amy & Evan- Just wanted to let you know that its just not Evan that is still not able to swallow. I finished my radiation treatments on Oct.27.08, Yes almost 14 months ago and I am just able to swallow some things now. I wasn't able to swallow anything until July, when I was able to start swallowing soft things like Ice Cream, Mashed Potatoes with gravy and broths. Now I am able to eat scrambled and soft eggs, french toast and a few other things. Of course these are very small bites and lots of liquid to get it down. My mouth opens only a small percentage of what it use to. I even took 47 Vital Stim Treatments which I had to drive 50 miles each time and still could not swallow any more. I ended those in August and just started trying to eat things on my own. I also have had to 2 barium swallows done and they told me both times that my epogalotis(spelling) was still swollen. My ENT scopes me every time I am there and says things are healing fine and some people take longer than others to heal so just give it time. I met a guy in Chemo who had the same cancer as I did (base of tongue) same Chemo,same number of radiation treatments. He finished treatment 1 month before me and was eating almost normal by time I finished. So yes people are different. Hope I don't discourage you and hope that your swallowing comes back way before the time it has taken me. I would say don't get down, it will come, give it time. I still use my PEG tube every day for nutrition and med intakes cause I don't get enough by mouth yet. If I can be of anymore help, please let me know.. Take Care and I wish you all the best..Randy in Ohio

    swallowing
    Very interested if possible in keeping up with you. I finished my treatments in March'09 and have been on again off again with being able to swallow anything (no food). Just recently was sent to speech therapist and told to do exercises and can now do a little water but have to be careful about aspiration.

    Jim in Virginia
  • Hondo
    Hondo Member Posts: 6,636 Member
    #27
    VaTad said:

    swallowing
    Very interested if possible in keeping up with you. I finished my treatments in March'09 and have been on again off again with being able to swallow anything (no food). Just recently was sent to speech therapist and told to do exercises and can now do a little water but have to be careful about aspiration.

    Jim in Virginia

    Hi Jim

    Just want to welcome you here to CSN. I believe the treatment affects all of us here who have cancer in the head or neck in different ways, some do well and others not as good. I too have problems swallowing but I note that it depends on the type of food, meat is too hard for me to chew and very hard to swallow, but I do ok with veggies. From your post I see you can’t handle any type food, keep doing the exercises and I will put you on my prayer list if you don’t mind.

    Take care
  • dream123
    dream123 Member Posts: 2
    #28
    amy_evan2005 said:

    Dream123,
    I have attempted
    Dream123,
    I have attempted to email you & it says it is not correct address. Here is my e-mail address, amy_evan2005@yahoo.com. Mail me something so it will be in there right.

    Thanks,
    Amy

    Failure to deliver Email tried 3 times To AmyandEvan
    I was unable to email using combinations of the email address such as amyevan@yahoo.com, AmyEvan@yahoo.com and Amy Evan@yahoo.com

    Try my E-Mail again at howglows@yahoo.com
    my email address has no spaces.

    I will be going to a gastroenerologist on Monday the 18th of January, he will evaluate me to see if I qualify for a FEES Exam. Fexiable Eating Exam of the Swallow "FEES" for short. The
    exam will show what is happening when I swallow. I can swallow juice, water and puree food. I puree food in my blender which tastes good, I still have my taste buds thanks to the Lord. The exam will help me to reach my goal of eating solid foods. I still have mucus but not too much because I try to have two cups of water for each time I have my meal through the feeding tube. My bowel movements have been regular where I don't have to depend on using suppositories laxative because I drink lots of water through the feeding tube. My swallow is small amounts I try to swallow at least 12 to 15 TBSP. of my prepared puree food.

    Hope to hear from you, please try again my email address
    howglows@yahoo.com
    God Bless Both Of You DREAM123
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #29
    dream123 said:

    Failure to deliver Email tried 3 times To AmyandEvan
    I was unable to email using combinations of the email address such as amyevan@yahoo.com, AmyEvan@yahoo.com and Amy Evan@yahoo.com

    Try my E-Mail again at howglows@yahoo.com
    my email address has no spaces.

    I will be going to a gastroenerologist on Monday the 18th of January, he will evaluate me to see if I qualify for a FEES Exam. Fexiable Eating Exam of the Swallow "FEES" for short. The
    exam will show what is happening when I swallow. I can swallow juice, water and puree food. I puree food in my blender which tastes good, I still have my taste buds thanks to the Lord. The exam will help me to reach my goal of eating solid foods. I still have mucus but not too much because I try to have two cups of water for each time I have my meal through the feeding tube. My bowel movements have been regular where I don't have to depend on using suppositories laxative because I drink lots of water through the feeding tube. My swallow is small amounts I try to swallow at least 12 to 15 TBSP. of my prepared puree food.

    Hope to hear from you, please try again my email address
    howglows@yahoo.com
    God Bless Both Of You DREAM123

    email address
    Hello again,

    I am giving you my email address in case i can't get through to yours. It is amy_evan2005@yahoo.com. Hope to hear from you soon. I normally check my email at least twice a week.

    Best wishes,

    Amy
  • enkido
    enkido Member Posts: 7
    #30
    amy_evan2005 said:

    welcome
    Dear Bob,
    When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
    There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
    He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
    Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

    Thanks & good luck Monday!!
    Amy & Evan

    P.S.
    Have you had a Barium Swallow Study yet?

    Scarring in throat
    What type of treatment was done for this blockage? I have not been able to swallow since my radiation treatments started August 26 2009. I got a PEG in September and use Jevity 1.5.
    Yesterday my Digestive Specialist, did an endoscopy with the intention of doing a dilation.
    When I was in the recovery room the Doctor said he has seen every type of problem there is, but never seen a throat completely blocked by scar tissue, as mine is. Could this be excess radiation?
    I have been referred back to my ENT doctor, but want to know what to expect.
    I have already had the Barium swallow test weeks ago with no success.
    Regarding nutrition, I'm putting pureed vegetables and fruits in my PEG. It usually requires an equal amount of water. When I started treatment ( 2 chemo and 35 radiation), I weighed 235 pounds, today I'm 168 pounds. So now more than ever I need the PEG. Avocados, sweet potatoes and navy beans have lots of calories.
    Good luck to all you Warriors out there.
    Enkido
  • enkido
    enkido Member Posts: 7
    #31
    time between test and dilation
    I finished radiation Oct. 16th, 2009. It took until now and a barium swallow test plus three endoscopy test to realize my throat is scarred shut. I now have been referred to MD Anderson, hospital Houston TX. My question is How long did it take after the test you described before they did the stint and dilation?
    Thanks
    God Speed in your recovery
    Enkido
  • dennis318
    dennis318 Member Posts: 349 Member
    #32
    dream123 said:

    I too have difficulty swallowing To AMY AND EVAN
    I completed 35 treatments of radiation and 5 chemo treatments on May 12 2009 and I have difficulty swallowing, its been 8 months. I have an appointment with the doctor that put my feeding tube in. The doctor will exam me to see if I qualify to have a Flexiable Eating Exam of the Swallow. FEES for short.This exam will show what happens when I swallow, answers why some of the food depending on its texture when I swallow comes back up and through my nose!

    I too have mucus coming up after I have my can of Peptamen ( 6 cans daily). The milk ingredients I suspect causes the mucus. The oncologist nurse told me to drink more water through my feeding tube. As a routine I drink 2 cups of water for each meal, which helps cut down on the mucus. When I eat soft foods (puree) there is no mucus because its usually baby vegetable puree foods.

    I am treated by a Speech Pathlogist for my swallowing. My insurance will cover 12 treatments and he tells me I should be able to eat solid foods that's why I am going to have the FEES to help assist to get to my goal (eating solid foods).

    Keep in touch with me and by the way my cancer was at the base of my tongue where a tumor was shrinked after the radiation and chemo treatments. I see my ENT every six weeks and will be scheduled for an Annual MRI sometime in June 2010, to see if I continue to be Cancer Free.

    Bless you and your Hub. Time is our friend to heal, please keep in touch. My email is howglows@yahoo.com
    Hope to hear from you Dream123

    Sore Throat And Mucus
    I'm on my 5th week of recovery from chemo and radiation, if it wasn't the pain killer I was given, I wouldn't be able to eat anything, my throat is general sore, and worst when I get up in the morning, I'm still coughing Phlem, seems worst when I sit? I gained 10-lbs. YEAH, but am wondering when I can look forward to not having this sore throat in the future, I know the Phlem will slow down and stop, it has ceased somewhat. I go back to another oncologist Monday to see what can be done, from what I've been threw, my voice continues to get stronger, and I can speak, but my voice tires throughout the day, I didn't take any rest, I worked throughtout my chemo and radiation, (That was a Feat in itself)....Any Feed Back would be apprecited. You People have become my friends and good positive support. Thanks. Dennis
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #33
    dream123 said:

    I too have difficulty swallowing To AMY AND EVAN
    I completed 35 treatments of radiation and 5 chemo treatments on May 12 2009 and I have difficulty swallowing, its been 8 months. I have an appointment with the doctor that put my feeding tube in. The doctor will exam me to see if I qualify to have a Flexiable Eating Exam of the Swallow. FEES for short.This exam will show what happens when I swallow, answers why some of the food depending on its texture when I swallow comes back up and through my nose!

    I too have mucus coming up after I have my can of Peptamen ( 6 cans daily). The milk ingredients I suspect causes the mucus. The oncologist nurse told me to drink more water through my feeding tube. As a routine I drink 2 cups of water for each meal, which helps cut down on the mucus. When I eat soft foods (puree) there is no mucus because its usually baby vegetable puree foods.

    I am treated by a Speech Pathlogist for my swallowing. My insurance will cover 12 treatments and he tells me I should be able to eat solid foods that's why I am going to have the FEES to help assist to get to my goal (eating solid foods).

    Keep in touch with me and by the way my cancer was at the base of my tongue where a tumor was shrinked after the radiation and chemo treatments. I see my ENT every six weeks and will be scheduled for an Annual MRI sometime in June 2010, to see if I continue to be Cancer Free.

    Bless you and your Hub. Time is our friend to heal, please keep in touch. My email is howglows@yahoo.com
    Hope to hear from you Dream123

    me too
    Dream, I am 21 wks post 35 rad trmnts and I still have a lot of trouble swallowing. I'm glad I saw your post b/c I'm getting my tube out next Wensday and I'm going to ask him to dilate my throat while he's at it. My husband has mentioned that several times but was sure how it would be done so I never really followed up with it (to many details to deal with and I'm not good with details any more....lol). No doctor has ever mentioned a Speech Path. If dilating my throat doesn't help, that is what I'll do next. Thank you so much for sharing your experiences, as you can see, people truly learn from this site :0)
    You will be in my prayers.
    God Bless,
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #34
    amy_evan2005 said:

    welcome
    Dear Bob,
    When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
    There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
    He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
    Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

    Thanks & good luck Monday!!
    Amy & Evan

    P.S.
    Have you had a Barium Swallow Study yet?

    ME TOO!!
    Amy and Evan, I also learned from this site. I had no idea what to ask my doc b/c I had no idea what was wrong. I didn't even know my cancer had a name!! I learned EVERYTHING I know about my cancer from HERE!! Nobody told me anything except, I had cancer. I am sure many others were just like us.
    All, you sharing your experiences really does help others so hang in there and keep on posting!!! Thank you to all who do!
    God Bless,
    Debbie
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #35
    enkido said:

    time between test and dilation
    I finished radiation Oct. 16th, 2009. It took until now and a barium swallow test plus three endoscopy test to realize my throat is scarred shut. I now have been referred to MD Anderson, hospital Houston TX. My question is How long did it take after the test you described before they did the stint and dilation?
    Thanks
    God Speed in your recovery
    Enkido

    update
    hi everyone & welcome Enkido,
    I have been without computer so i haven't been able to stay in contact. Evan is finally {hopefully} going to have his surgery on March 22nd. Evan has now lost about 60 lbs. We have a general surgeon that has hooked us up with a different ent dr. They are doing the surgery together but they aren't sure they can get it open. The general surgeon did inform us that the reason this surgery isn't normally done is because a stint should be put in place before it closes all the way. At least enough to swallow saliva. Then from that opening they can start to dilate when swelling is down. If you are like us we don't understand how they could look so many times and not see the blockage. The mucous is getting better but still alot. Of course not being able to swallow your own saliva is bad enough. If anyone would like to speak with me or ask any questions you can reach me at 317-504-5623. If i don't answer just leave message and I will return your call.

    Thanks and good luck,
    amy & evan
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #36
    enkido said:

    time between test and dilation
    I finished radiation Oct. 16th, 2009. It took until now and a barium swallow test plus three endoscopy test to realize my throat is scarred shut. I now have been referred to MD Anderson, hospital Houston TX. My question is How long did it take after the test you described before they did the stint and dilation?
    Thanks
    God Speed in your recovery
    Enkido

    The time it has taken from
    The time it has taken from barium to surgery is Nov. to present{still haven't had}. Hopefully your dr.'s are quicker than ours. If not call and bug them tell them what you want done and asap. Unfortunately once you stop allowing them to put you off by not being so nice they seem to get a little quicker.
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #37
    enkido said:

    time between test and dilation
    I finished radiation Oct. 16th, 2009. It took until now and a barium swallow test plus three endoscopy test to realize my throat is scarred shut. I now have been referred to MD Anderson, hospital Houston TX. My question is How long did it take after the test you described before they did the stint and dilation?
    Thanks
    God Speed in your recovery
    Enkido

    The time it has taken from
    The time it has taken from barium to surgery is Nov. to present{still haven't had}. Hopefully your dr.'s are quicker than ours. If not call and bug them tell them what you want done and asap. Unfortunately once you stop allowing them to put you off by not being so nice they seem to get a little quicker.
  • c7mckinc
    c7mckinc Member Posts: 1
    #38
    difficulty swallowing after radiation for nasopharyngeal cancer
    Amy,
    I finished my radiation back in June 2009 and have been unable to swallow since. At first the radiologist and oncologist talked as though I should have been swallowing all along, making me feel like I was losing my mind. Then my ENT doctor told me that the radiation causes the tissues inside the throat to become like cement and that I was doing fine and it was going to take between 12 and 18 months before I would be able to swallow again. Upon telling my radiologist and oncologist what the ENT said, they finally agreed. The gastrointerologist tried doing a barium swallow on me back in December 2009 and I almost choked to death on the barium. We could NOT get anything down. He then tried a scope at the local hospital since they have smaller scopes than in the office and he was unable to get anything down my throat as they said my esophagus was now the size of a straw. I have been pumping eight cans of Ensure in my peg tube for going on ten months now. I have noticed that my saliva is NOT thick and white and foamy anymore. I can only give you the same hope my ENT gave me, be patient and I keep my target date of 18 months out there to look forward to. I know this might not be what you wanted to hear, but I was relieved when someone finally had the guts to tell me the truth, so I wouldn't think I was losing my mind anymore.
    Elizabeth
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #39
    c7mckinc said:

    difficulty swallowing after radiation for nasopharyngeal cancer
    Amy,
    I finished my radiation back in June 2009 and have been unable to swallow since. At first the radiologist and oncologist talked as though I should have been swallowing all along, making me feel like I was losing my mind. Then my ENT doctor told me that the radiation causes the tissues inside the throat to become like cement and that I was doing fine and it was going to take between 12 and 18 months before I would be able to swallow again. Upon telling my radiologist and oncologist what the ENT said, they finally agreed. The gastrointerologist tried doing a barium swallow on me back in December 2009 and I almost choked to death on the barium. We could NOT get anything down. He then tried a scope at the local hospital since they have smaller scopes than in the office and he was unable to get anything down my throat as they said my esophagus was now the size of a straw. I have been pumping eight cans of Ensure in my peg tube for going on ten months now. I have noticed that my saliva is NOT thick and white and foamy anymore. I can only give you the same hope my ENT gave me, be patient and I keep my target date of 18 months out there to look forward to. I know this might not be what you wanted to hear, but I was relieved when someone finally had the guts to tell me the truth, so I wouldn't think I was losing my mind anymore.
    Elizabeth

    update
    Hello everyone,
    Just wanted to let everyone know how evan is doing. We found him another doctor that was able to {with the help of a Thorasic surgeon} get his esophagus open. He still isn't able to swallow, but he's getting there. They removed his trach this past Tuesday. They thought it might be inhibiting his ability to swallow. It does seem to have helped some.
    I have to go for now,but I am back online so I will be posting again soon.

    Thanks,
    Amy & Evan
  • Bugalatta
    Bugalatta Member Posts: 2
    #40
    amy_evan2005 said:

    welcome
    Dear Bob,
    When they went in to dilate they found that his esophagus is completely scarred closed. They are now sending him to a general surgeon to run a scope through his stomach up & one down his throat at the same time to see how large the blockage is & if they can put an opening in it to dilate. We have been telling them since August that their is something blocking it, but they just kept putting us off with it's the swelling from radiation or from something else. The blockage appears to be directly behind his voicebox where the radiation was aimed. He also has to "cough" up if he tries to swallow anything. Even his own saliva. He has to carry a bottle with him at all times for the saliva.
    There is also alot of helpful info on the esophageal discussion board if you have'nt been there yet. Especially about dilating the esophagus. I'm assuming you have a feeding tube in. We have recently decided to start using homemade foods through the tube. He is fuller & has a more satisfied feeling. Also his mucous seems to be getting better since we have replaced "real food" for the ensure plus. He was on Isosource, but it upset his stomach.
    He still uses the ensure, but not as many. It takes a little more time to fix the real food, but it's worth it. Check out Lucy's website. The site is listed in an earlier entry.
    Any questions you have please let us know & we'll be glad to help if we can. We've gotten more done since I found this website in Nov.than was done since July. Mainly because we've been able to ask the right questions now & when we don't like the answer telling them what we want done not what they want to try out for another month or so. This is almost all from what we have learned from others on this site.We also have a couple of discussions on the esophageal board with some more info.

    Thanks & good luck Monday!!
    Amy & Evan

    P.S.
    Have you had a Barium Swallow Study yet?

    Does anyone have any suggestions as to which baby foods or pureed foods might help replace a can or two of Ensure down g-tube each day so I can eventually wean myself from Ensure which I, too, believe helps aggravate mucus. I am having the same difficulty swallowing and 'coughing' back up too and trying to be patient but easing stomach (and mucus!) from Ensure would be nice in the meantime.

    Thanks!

    Bugalatta
  • Scambuster
    Scambuster Member Posts: 973
    #41
    Bugalatta said:

    Does anyone have any suggestions as to which baby foods or pureed foods might help replace a can or two of Ensure down g-tube each day so I can eventually wean myself from Ensure which I, too, believe helps aggravate mucus. I am having the same difficulty swallowing and 'coughing' back up too and trying to be patient but easing stomach (and mucus!) from Ensure would be nice in the meantime.

    Thanks!

    Bugalatta

    I found one
    HI Bugalatta,

    I was intolerant to the Ensures and hospital muck. I found and used Vitashake - made and sold by Sunrider. It is made from 100% Plant Based natural ingredients. It is sold through distributors or from their outlets. It is a MLM Co. but don't let that get in your way. The product is very good. I joined and get a 20 or 25% discount. Do a Google search to get their Toll free No.s and nearest location. There are some other similar products. Look for 'Dairy Free'.

    Vitashake comes in sachets as powder. 10 Sachets per box.

    I mixed mine with Rice Milk and you can also use Soy or Almond milk or rotate among those. I used 200ml per serve so you get about 400 cals each Shake and 200ml is a good size for the tube. I put mine in via the PEG from week 3 of treatment till about 2 mths post treatment and still take one a day now but the normal way with my cereal and fruit in the morning. During treatment I only managed 3-4 a day but it kept me alive.

    It may be a a little expensive but I have no comparison and also think my health was worth it regardless. I had mucus issues but nothing compared to many people here and I give credit to this product.

    PM me if you need more info.

    Cheers
    Scambuster

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