Advice

Amy0309

Hi, I have written once before concerning my mother.  I do research through this wonderful supporitve board frequently, and would like to ask advice from you all again.  My mother is 82 years old, she completed 35 rounds of radiation follwoing a debulking of hypopharyngeal(very close to voice box) cancer tumor in January 2013(radiation finished in January).  So far she is still cancer free, another CT scan next week.  She did swallow therapy starting at the beginning of radiation and has religously performed the excercises. Dr. and therapist say they have never seen someone work so hard.  She has had four or five esophageal dilations.  The first one got no where, very torn up and no lumen(opening) was seen.  The second one they did through her esophagus and peg, they managed to get through slightly.  The third and fourth dilations have been the same, she is extremely scared, the doctor manages to wiggle through and stretch her quite far.  All of these dialions have had to be performed under general anesthesia.

She still can only barley get anything down correctly.  To do so, she has to turn her head to one side, take a very small portion of pureed food, concentrate on each muscle and can sometimes get it down correctly.  When she does aspirate she has excelent coughing abilities to get it out(per therapist).  Her problem is not so much the muscle, but apparantley one side is really bad from the radiation, food and drink can get caught in a groove of scar tissue and just goes straight down the wrong way. 

Each of these dilations performed under general aneshesia really wipe her out, she just starts getting back to feeling a little better and we try again.  She is almost at the point that she has accepted she will not be able to eat by mouth.  We have another dilation scheduled in two weeks, but have multiple questions before we go ahead or cancel.  Also, considering at least waiting until after the holiday.  We have a call in with the doctor as well to discuss the issues, but your input is so valuable.

 

Some of our concerns and questions:  Can these dilations affect her voice permantley, her voice has been affected, but she still has it and does not want to loose it.  I have read that dilations can harm the voice box(her cancer was just above it), but also that new scar tissue can form from the radiation and affect it also, so doing nothing may have adversities as well.

How long does the scaring take to heal, if if heals will some of these grooves become smother?

Has anyone had a similar case? It seems to be very complicated by where the cancer and damage is? 

We live in the Chicago area, and seem to be with a fabulous doctor, but should we get a second opinion. 

She has a lot of phlem and just feeling sick very often, is this normal?  She is on Jevity feedings, maybe we should try another one?

Any thoughts on if these dilations would ultimately get her to be able to eat?

Did anyone else have to have there dilations under general anesthesia?  The doctor did say if we can get to a certain point we could do them in the office.  He said that she is so scared, and he some how wiggles through different holes and then stretches, so it does not sound like she has one straight lumen or opening. 

So sorry to be so long, was just trying to be clear.  Thank you in advance for any input you loves may have.

Amy

 

 

 

 

 

 

Ladylacy

Your Mother

Has your mother been checked to see if one side of her vocal cord is paralyzed?  This could cause a problem.  As far as the dilations I would start being concerned about them tearing her esophagus and causing even more problems.  I hope you all have been told this could happen, at least our doctor did warn us about this possibility.

Being on a feeding tube for the rest of your life isn't bad, my husband (age 76) is and so are many others.  Granted he would love to eat food but it not able due to damage done by radiation, he can barely swallow anything.  He also has a tumor at the cervical of his esophagus that blocks.  He is a laryngectomee so breathing isn't affected.  He has been on this second feeding tube since May 2012.  First time he was only on a feeding tube for about a year and then he was able to eat very slowly with lots of water to push the food down.  But after his second round of radiation, he has never been able to eat food and yes he has had dilations but they didn't work.

As far as Jevity some people have no problems with it.  My husband has been on Jevity but only when he was in the hospital.  He is on Nutren 1.5 because it has more calories, gluten free and no lactose.

As far as the phlem my husband has had that since his first treatment starting in August 2010 and though it is better than before it is still there and nothing stops it.  We used to say we owned the paper towel companies due to how many rolls he went thru at first.

Wishing you and your mother the best -- Sharon

Amy0309

Ladylacy said:

Your Mother

Has your mother been checked to see if one side of her vocal cord is paralyzed?  This could cause a problem.  As far as the dilations I would start being concerned about them tearing her esophagus and causing even more problems.  I hope you all have been told this could happen, at least our doctor did warn us about this possibility.

Being on a feeding tube for the rest of your life isn't bad, my husband (age 76) is and so are many others.  Granted he would love to eat food but it not able due to damage done by radiation, he can barely swallow anything.  He also has a tumor at the cervical of his esophagus that blocks.  He is a laryngectomee so breathing isn't affected.  He has been on this second feeding tube since May 2012.  First time he was only on a feeding tube for about a year and then he was able to eat very slowly with lots of water to push the food down.  But after his second round of radiation, he has never been able to eat food and yes he has had dilations but they didn't work.

As far as Jevity some people have no problems with it.  My husband has been on Jevity but only when he was in the hospital.  He is on Nutren 1.5 because it has more calories, gluten free and no lactose.

As far as the phlem my husband has had that since his first treatment starting in August 2010 and though it is better than before it is still there and nothing stops it.  We used to say we owned the paper towel companies due to how many rolls he went thru at first.

Wishing you and your mother the best -- Sharon

Thank you

Sharon, thank you for your speedy response.  I appreciate the honesty.  The doctor has not mentioned a concern of tearing the esophagus, nor has someone evaluated her vocal cord.  How do the evaluate the vocal cord? And can something be done if it is affected?  My best to you and your husband Sharon you two have been through a lot.  Thanks again.

hwt

Amy0309 said:

Thank you

Sharon, thank you for your speedy response.  I appreciate the honesty.  The doctor has not mentioned a concern of tearing the esophagus, nor has someone evaluated her vocal cord.  How do the evaluate the vocal cord? And can something be done if it is affected?  My best to you and your husband Sharon you two have been through a lot.  Thanks again.

Amy

Sorry I don't have anything to offer on your Mom's situation as I didn't experience similar. I do send my prayers though. 

Candi in STL

Amy0309

hwt said:

Amy

Sorry I don't have anything to offer on your Mom's situation as I didn't experience similar. I do send my prayers though. 

Candi in STL

Thank you Candi.

Thank you Candi.

debbiejeanne

amy, i had cancer of the

amy, i had cancer of the voive box and my throat was damaged from rads also.  i have to have my throat stretched about once every 2 - 3 months.  i let the try it in the office one time and said NEVER again!!  i have it done at the hosp and i am under anesthesia when i have it done.  i would NOT let them do it in the office.  i had to drink very thick lanocane to numb the throat (it did'nt but it made me sick) then they stuck a 3 ft cable down my throat.  i couldn't stop gagging.  i had to make them pull it out and stop.  i will NEVER do that again.  my throat needs stretched now but i'm putting it off until i can't deal w/it anymore.  i'm sorry ur mom is going thru this and i will pray for you both.  please keep us posted of her progress.  God bless.

dj

Mrs. Sarge

debbiejeanne said:

amy, i had cancer of the

amy, i had cancer of the voive box and my throat was damaged from rads also.  i have to have my throat stretched about once every 2 - 3 months.  i let the try it in the office one time and said NEVER again!!  i have it done at the hosp and i am under anesthesia when i have it done.  i would NOT let them do it in the office.  i had to drink very thick lanocane to numb the throat (it did'nt but it made me sick) then they stuck a 3 ft cable down my throat.  i couldn't stop gagging.  i had to make them pull it out and stop.  i will NEVER do that again.  my throat needs stretched now but i'm putting it off until i can't deal w/it anymore.  i'm sorry ur mom is going thru this and i will pray for you both.  please keep us posted of her progress.  God bless.

dj

Don't know about the dilations

but I do know there are voice/vocal cord specialists that can put a camera down your throat (no numbing and no gagging) and see how it works and film it and you also can see it, just amazing.  They can diagnose what needs to be done and maybe therapy to help!  The Dr. I went to was a ENT with a sub specialty of voice/vocal cords.  Hope that helps!

Ladylacy

Amy0309 said:

Thank you

Sharon, thank you for your speedy response.  I appreciate the honesty.  The doctor has not mentioned a concern of tearing the esophagus, nor has someone evaluated her vocal cord.  How do the evaluate the vocal cord? And can something be done if it is affected?  My best to you and your husband Sharon you two have been through a lot.  Thanks again.

Amy

An ENT doctor can put a small tube down your mother's nose that goes into her throat and below and can look around.  That is how my husband's laryngeal tumor was found and also how the ENT found that his right side of his vocal cord was paralzyed and he also saw the tumor was still there.  Done in the doctor's office and didn't hurt my husband at all.  Some say botox shots help, I don't know.  My husband had to have surgery to remove his larynx. 

michdjp

Sorry to hear about your moms struggles

My dad had a real problem getting back to eating as well. we tried one doctor in ny then I researched and went to North Carolina to wake forest baptist and had dads throat stretched under anesthia 3times. (Every 3 weeks) The first time was both the peg and down the throat and the next two times down the throat.  All 3 times he injected steroid to help with the swelling. His recovery after dilationds was about a week because he Was very sore.  These dilations got dad to eat and drink most things (meat is still a prnothing the food doesn't go down sooo easy but it does go down and for that we are thankful. I hope this helps.

Amy0309

debbiejeanne said:

amy, i had cancer of the

amy, i had cancer of the voive box and my throat was damaged from rads also.  i have to have my throat stretched about once every 2 - 3 months.  i let the try it in the office one time and said NEVER again!!  i have it done at the hosp and i am under anesthesia when i have it done.  i would NOT let them do it in the office.  i had to drink very thick lanocane to numb the throat (it did'nt but it made me sick) then they stuck a 3 ft cable down my throat.  i couldn't stop gagging.  i had to make them pull it out and stop.  i will NEVER do that again.  my throat needs stretched now but i'm putting it off until i can't deal w/it anymore.  i'm sorry ur mom is going thru this and i will pray for you both.  please keep us posted of her progress.  God bless.

dj

Thank you Debbie, we did

Thank you Debbie, we did speak with the ENT surgeon who has been doing these under general anesthesia, he said he would refer us to a gastroenterologist for him to have a look see under a milder anesthesia and do a dialtation if he can.  The general anesthesia just wipes her out so badly at her age and sort of dibilitated state(just weakened really from the past year).  He told us her pyriformus sinus is completely scarred over, he still believes he can get her to be able so swallow some foods.  We just do not know which ave. to take at this point.  Have the stretching ever made your situation worse?  Thank you for sharing.  Amy

Amy0309

Mrs. Sarge said:

Don't know about the dilations

but I do know there are voice/vocal cord specialists that can put a camera down your throat (no numbing and no gagging) and see how it works and film it and you also can see it, just amazing.  They can diagnose what needs to be done and maybe therapy to help!  The Dr. I went to was a ENT with a sub specialty of voice/vocal cords.  Hope that helps!

Great info, thank you.

Great info, thank you.

Amy0309

michdjp said:

Sorry to hear about your moms struggles

My dad had a real problem getting back to eating as well. we tried one doctor in ny then I researched and went to North Carolina to wake forest baptist and had dads throat stretched under anesthia 3times. (Every 3 weeks) The first time was both the peg and down the throat and the next two times down the throat.  All 3 times he injected steroid to help with the swelling. His recovery after dilationds was about a week because he Was very sore.  These dilations got dad to eat and drink most things (meat is still a prnothing the food doesn't go down sooo easy but it does go down and for that we are thankful. I hope this helps.

Thank you, I have mentioned

Thank you, I have mentioned the steriods to the doctor but he does not really respond to that.  We spoke with the ENT surgeon he is willing to send us to a gastro doctor to do an upper gi with possible dialation and look see under minimal anesthesia.  He still believes he can get her to swallow some foods again.  Our problem at this point is the general anesthesia really wipes her out and by the time she gets stronger were back at it.  Her pyroformus sinus is completely scarred shut also.  I have been researching, to try to find specialty docs for the dialations without much success.  Could you share what you entered to research?  Thank you all so much!  Amy

katenorwood

Hello Amy !

Your Mother sounds like one tough cookie !  My Mother was the same.  I don't have any experience with what she is enduring, but I think that a second opinion wouldn't hurt.  Yes we have several on board here that have permenant issues with no food by mouth.  And they are living life to it's fullest.  I will keep her in my thoughts and prayers !  And please let her know how strong we think she is.  Others will pop in with more advice and answers for you !  Katie

Amy0309

katenorwood said:

Hello Amy !

Your Mother sounds like one tough cookie !  My Mother was the same.  I don't have any experience with what she is enduring, but I think that a second opinion wouldn't hurt.  Yes we have several on board here that have permenant issues with no food by mouth.  And they are living life to it's fullest.  I will keep her in my thoughts and prayers !  And please let her know how strong we think she is.  Others will pop in with more advice and answers for you !  Katie

Thank you for your kind

Thank you for your kind words.  I will let her know.

debbiejeanne

Amy0309 said:

Thank you Debbie, we did

Thank you Debbie, we did speak with the ENT surgeon who has been doing these under general anesthesia, he said he would refer us to a gastroenterologist for him to have a look see under a milder anesthesia and do a dialtation if he can.  The general anesthesia just wipes her out so badly at her age and sort of dibilitated state(just weakened really from the past year).  He told us her pyriformus sinus is completely scarred over, he still believes he can get her to be able so swallow some foods.  We just do not know which ave. to take at this point.  Have the stretching ever made your situation worse?  Thank you for sharing.  Amy

the stretching has never made

the stretching has never made it worse but it doesn't last long.  the last time i had it done food and pills were getting stuck again after a month!  very disappointing.  good luck w/ur mom.

God bless.

dj