base tongue & lymph nodes with cancer

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base tongue & lymph nodes with cancer

by helpmeplease on Sat Jun 20, 2009 12:00 AM

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My husband was diagnosed 1 month ago, finally have seen the surgical oncologist and have an appt. for radiologist oncologist on the 25th, then on 29th with chemotherapy oncologist -- it is taking so long to get started....very frustrating as well as very concerning.  He'll have combined treatment of radiation and chemo. 

As I read other messages it sound as if getting the "feeding tube" (is this the PEG?), on the front end is productive to keeping hydrated & effective in keeping weight on -- my husband is totally psyched up to NOT get one, says he will swallow.  I know, from my readings, this is most likely not a good attitude on his part. 

His doctor is in Memphis at UT - Dr. Sandeep Samant -- has anyone on this message board been cared for by him? 

The cancer is stage 4, over 4 centimeters, in the lymph nodes on both sides of his neck.  He has difficult swallowing, hoarseness, tired (but still playing golf and mowing the yard!), beginning to become depressed. 

Any really good advise as we start walking this road?  How soon after radiation will the throat and mouth begin to be sore?  What foods seem to be comfortable? 

Thanks so very much.

RE: base tongue & lymph nodes with cancer

by mmmr08 on Mon Jun 22, 2009 12:00 AM

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Peg tube now is a really good idea.  Even if he finds he does not need it, which is unlikely, he will have it there and not have to have it done when he is sick.  My husband refused the peg in the beginning but lost so much weight and was nauseated by anything going through his mouth that what he did get down came back up.  There is no shame in getting the Peg. 

My husband had Stage iv tonsil cancer with right side neck involvement.  He completed tx 7/2/08 and is doing pretty well.

Glad to help if you have questions.

RE: base tongue & lymph nodes with cancer

by cawife on Tue Jun 23, 2009 12:00 AM

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My husband had Stage IV right tonsil cancer with lymph node involvement on both sides of the neck.  He was diagnosed last October, started radiation and chemo in Dec, and finished treatment last February.  His doctor was reluctant to insert a PEG because the swallow mechanism can be impaired.  Even a few weeks of not swallowing can require physical therapy just to relearn how to swallow, and dependency on the PEG can last for months, even a year after treatment is finished.  My husband wanted to go as long as he could without the PEG as a crutch.  We knew weight would be an issue so we fed him a high calorie, nutrient and protein rich (as much as 170 grams protein per day)  diet, supplemented by high quality vitamins (visit a nutritionist early as some vitamins can interfere with treatment) and did this as long as he was able to swallow. Also something we didn't do, and should have, was to get a barium swallow study done as soon as possible to establish a baseline for future swallow studies.  Speech pathology does this, and they are an invaluable tool in finding ways to keep the swallow mechanism going. 

My husband actually had about 3 -4 weeks of relative comfort after he started treatment before the symptoms got severe.  There is a "magic mouthwash" that your doctor can perscribe for mouth pain.  Its a lidocaine, maalox, benedryl mix.  It worked for a while.  Gel Clair is also a perscription mouth coating that can help, and the nutirtionist had him swishing and swallowing glutamine to help heal the mouth. Drinking aloe vera also helped for a while.

Everyone is different, and there seem to be just as many treatment protocols.  My husband did not sail through this unscathed.  By the last week of treatment he had severe mucositis and radiation burn, both inside and outside the neck.  He took 3 hours to swallow an 8 ounce can of high calorie protein drink and we were lucky if he could manage 1 1/2 of those a day.  He lost 50 pounds (he put on15 at the start of treatment) and we came very close to getting a PEG during that last week of treatment.  We made it through by getting IV hydration 3 times a week.  A couple of weeks after radiation stopped his mouth had healed enough to pureed food again and two months later he could tolerate almost any mild solid food.  He gained back about 20 lbs and is probably at the perfect weight now.  I asked him if he had it to do over again, would he opt for a PEG, and the answer was a definite no.  We attend meetings of SPOHNC (Support for People with Oral Head and Neck Cancer) and some people still have their PEG tubes in after 1 year post treatment.  And speaking of SPOHNC, it's a great organization for us.  They have a book I would highly recommend geared just for Head and Neck cancers, dealing with all head and neck subjects from symptoms to insurance, a really valuable resource that I wish we had early on.  There is also a cookbook designed for swallow issues, pretty good recipes.  The info is online at www.spohnc.org

 This is a life changing ordeal.  My thoughts and prayers are with you.  Just know that whatever decision you make that there is an end, and that many people, my husband included, come out cancer free.  Good luck.

RE: base tongue & lymph nodes with cancer

by mtkjohn1 on Sat Jun 27, 2009 12:00 AM

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my rad dr told me that i must do the Peg tube and it worked out great

it was out of me 1 month after Tx was completed as asoon as I could hold my weight by eating threw my mouth

I drank water and slippery elm tea with good raw honey everyday to heal and keep my throat working well

no problem with swallowing and the peg tube allowed me to get the nutrition my body needed to heal without takeing hours

the Tx is bad enough

i guess it is just your experiace with what you go threw witht the terrible monster

john

RE: base tongue & lymph nodes with cancer

by helpmeplease on Sun Jun 28, 2009 12:00 AM

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On 6/23/2009 cawife wrote:

My husband had Stage IV right tonsil cancer with lymph node involvement on both sides of the neck.  He was diagnosed last October, started radiation and chemo in Dec, and finished treatment last February.  His doctor was reluctant to insert a PEG because the swallow mechanism can be impaired.  Even a few weeks of not swallowing can require physical therapy just to relearn how to swallow, and dependency on the PEG can last for months, even a year after treatment is finished.  My husband wanted to go as long as he could without the PEG as a crutch.  We knew weight would be an issue so we fed him a high calorie, nutrient and protein rich (as much as 170 grams protein per day)  diet, supplemented by high quality vitamins (visit a nutritionist early as some vitamins can interfere with treatment) and did this as long as he was able to swallow. Also something we didn't do, and should have, was to get a barium swallow study done as soon as possible to establish a baseline for future swallow studies.  Speech pathology does this, and they are an invaluable tool in finding ways to keep the swallow mechanism going. 

My husband actually had about 3 -4 weeks of relative comfort after he started treatment before the symptoms got severe.  There is a "magic mouthwash" that your doctor can perscribe for mouth pain.  Its a lidocaine, maalox, benedryl mix.  It worked for a while.  Gel Clair is also a perscription mouth coating that can help, and the nutirtionist had him swishing and swallowing glutamine to help heal the mouth. Drinking aloe vera also helped for a while.

Everyone is different, and there seem to be just as many treatment protocols.  My husband did not sail through this unscathed.  By the last week of treatment he had severe mucositis and radiation burn, both inside and outside the neck.  He took 3 hours to swallow an 8 ounce can of high calorie protein drink and we were lucky if he could manage 1 1/2 of those a day.  He lost 50 pounds (he put on15 at the start of treatment) and we came very close to getting a PEG during that last week of treatment.  We made it through by getting IV hydration 3 times a week.  A couple of weeks after radiation stopped his mouth had healed enough to pureed food again and two months later he could tolerate almost any mild solid food.  He gained back about 20 lbs and is probably at the perfect weight now.  I asked him if he had it to do over again, would he opt for a PEG, and the answer was a definite no.  We attend meetings of SPOHNC (Support for People with Oral Head and Neck Cancer) and some people still have their PEG tubes in after 1 year post treatment.  And speaking of SPOHNC, it's a great organization for us.  They have a book I would highly recommend geared just for Head and Neck cancers, dealing with all head and neck subjects from symptoms to insurance, a really valuable resource that I wish we had early on.  There is also a cookbook designed for swallow issues, pretty good recipes.  The info is online at www.spohnc.org

 This is a life changing ordeal.  My thoughts and prayers are with you.  Just know that whatever decision you make that there is an end, and that many people, my husband included, come out cancer free.  Good luck.


Thank you so much for your reply.  Congratulations to you and your husband at your progress!!! 

I will look at the online site of SOHNC -- you are the first to mention suc a place -- the book sounds worth reading. 

My husband is so opposed to the PEG and I read where many have gotten it on the front end to help with the nutrition, etc. yet, I am beginning to read much about the difficulties associated with the swallowing post treatment....

Thanks so much -- I hope for you both a long and safe life.

 

RE: base tongue & lymph nodes with cancer

by hirehand on Sun Jun 28, 2009 12:00 AM

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Hi,

I am sorry to hear about your husband, i have found this forum very helpful in my treatment.

i was diagnosed with cancer in my lympgh node on the right side of my neck in March. I am going to Boston University Medical Center. I luckily have a world renowned Head & Neck Specialist Dr Jalisi. He removed my tonsils in April and found that the tonsil was the source of the cancer.  The advice from the tumor  board was surgery with an outside chance of radiation & chemo if necessary afterwards. They removed 23 lymph nodes and one tested positive 3+ centimeter and the membrane was breached. Therefore i will need to have chemo & radiation together starting in mid-July. The Dr said that if we had decided on just the chemo & radiation instead of surgery first that the combo would not have destroyed the cancer.

I am telling you this because it could be another option to check out. Remember though everyone is different. maybe you might want to get another opinion.

 All the best,

Rick

 

 

 

 

RE: base tongue & lymph nodes with cancer

by shattered on Wed Jul 15, 2009 12:00 AM

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Just to let you know, the PEG tube was a life saver for me. I know it kept me strong throughout the 7 weeks of radiation and 2 months after. And believe me, your husband will need and want to drink water at all times. He will be able to swallow after treatment, it just takes time (and patience). My big blue water bottle is still with me all of the time even four months since my last radiation, being my salivary glands are not working like they used to!! But I have more now than I did. Eating is always an issue, but I'm getting used to what works for me.

RE: We are united in our suffering and through cancer which does not define us

by Oudave on Wed Oct 21, 2009 12:00 AM

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On 6/23/2009 cawife wrote:

My husband had Stage IV right tonsil cancer with lymph node involvement on both sides of the neck.  He was diagnosed last October, started radiation and chemo in Dec, and finished treatment last February.  His doctor was reluctant to insert a PEG because the swallow mechanism can be impaired.  Even a few weeks of not swallowing can require physical therapy just to relearn how to swallow, and dependency on the PEG can last for months, even a year after treatment is finished.  My husband wanted to go as long as he could without the PEG as a crutch.  We knew weight would be an issue so we fed him a high calorie, nutrient and protein rich (as much as 170 grams protein per day)  diet, supplemented by high quality vitamins (visit a nutritionist early as some vitamins can interfere with treatment) and did this as long as he was able to swallow. Also something we didn't do, and should have, was to get a barium swallow study done as soon as possible to establish a baseline for future swallow studies.  Speech pathology does this, and they are an invaluable tool in finding ways to keep the swallow mechanism going. 

My husband actually had about 3 -4 weeks of relative comfort after he started treatment before the symptoms got severe.  There is a "magic mouthwash" that your doctor can perscribe for mouth pain.  Its a lidocaine, maalox, benedryl mix.  It worked for a while.  Gel Clair is also a perscription mouth coating that can help, and the nutirtionist had him swishing and swallowing glutamine to help heal the mouth. Drinking aloe vera also helped for a while.

Everyone is different, and there seem to be just as many treatment protocols.  My husband did not sail through this unscathed.  By the last week of treatment he had severe mucositis and radiation burn, both inside and outside the neck.  He took 3 hours to swallow an 8 ounce can of high calorie protein drink and we were lucky if he could manage 1 1/2 of those a day.  He lost 50 pounds (he put on15 at the start of treatment) and we came very close to getting a PEG during that last week of treatment.  We made it through by getting IV hydration 3 times a week.  A couple of weeks after radiation stopped his mouth had healed enough to pureed food again and two months later he could tolerate almost any mild solid food.  He gained back about 20 lbs and is probably at the perfect weight now.  I asked him if he had it to do over again, would he opt for a PEG, and the answer was a definite no.  We attend meetings of SPOHNC (Support for People with Oral Head and Neck Cancer) and some people still have their PEG tubes in after 1 year post treatment.  And speaking of SPOHNC, it's a great organization for us.  They have a book I would highly recommend geared just for Head and Neck cancers, dealing with all head and neck subjects from symptoms to insurance, a really valuable resource that I wish we had early on.  There is also a cookbook designed for swallow issues, pretty good recipes.  The info is online at www.spohnc.org

 This is a life changing ordeal.  My thoughts and prayers are with you.  Just know that whatever decision you make that there is an end, and that many people, my husband included, come out cancer free.  Good luck.


 

Boy, you really described what your husband went trough and as cancer patients we too often forget and dodn't give suffiecient praise and love to our many caregivers-especially those closest too us like out spouses, relatives and significant others.  While it sounds corney and cliche'd, taking care and worrying about someone with cancer can be harder than those of us with it-so God Bless you and may the Holy Spirit be with you each step of the journey and the loving Hand of our Savior continue to reach out for you and all of us on this site and in the hospitals and recovering at home etc,

I tell you, you mentioned your Husband had mucositis and I had it for 6 weeks.  No one atr the James in Columbus ever told me about that potential side effect and it was absolutely horible.  Had to rent a machine to clear out the constnat and choking saliva-my heart goes out to anyone who has gotten Mucositis...which has to run its course over 4-6 weeks-no cure.  Then , with radiation, trying to eat again is a true challenge for the patient and the caregiver...all the worry...anxiety..... 

Thank you for the site www.spohnc also-what a great and helpful post-see the Holy Spirit is always guiding me....and all who invite Him. 

 

In our fear in the middle of the night or the lonliness in the afternoon,  we remember that each new day is a new opportunity for me and each of us to remember each other in a Special Way before our Maker and Savior, offer up our Pain and Suffering to our Heavenly Treasure, and ask what we can do, in any small way, to help those more needy or less fortunate than us.  We are united together in our suffering well beyong this site and our computers with the One who suffered and gave his life in absolute suffering so we could join his heavenly family in our next life.  Oudave

 

     

 

 

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