Base of Tounge

Flyfisherman

This is my first post on this forum.  I really haven't reached out before this time as it seems be uncomfortable.  At 53 years old and after several months of a mild sore throat and some ear pain, I was diagnosed with Stage 4 SCC cancer on the base of my tounge in early January 2015.  I went to Wake Forest Baptist Medical Center for a neck disection where the mass was removed along with several lymph nodes and my tonsils.  It was diagnosed to be HPV related.  In May, I began 6 weeks of Cisplatin and 6 weeks/30 sessions of Radiation which finished at the end of June.  I was very fortunate and once the food tube came out after surgery, I have not needed another.

My problem is I am still having trouble eating due to lack of saliva, caused by the radiation and swallowing due to a combination of the surgery and radiation which has affected the flaps on my airway and esophagus.  I have seen therapists regarding swallowing.  I run the risk of aspiration so, I have to be careful and always take water along with whatever I am eating.  I try to eat and have found some things that are easier and many things that are harder to eat, but I continue to lose weight.  I started heavy with weight to spare, but I am now down about 115 lbs.  We always try to eat things that I can eat, even when I do find thngs I can eat, mostly fish, vegatables and moist things with gravies I can't eat much...I do several protein shakes a day and go tough LOTS of water.

My latest CT scan came back clear!  So I am very excited.  I've found that I tend to be more emotional than ever before and I've also found that I can talk openly with cancer survivor friends who have had their own trials and tribulations.  Other people empathize, but don't understand where I have been and what I am dealing with.  Some days are harder and I don't always understand why one day would be better than another.

I am back to work, but tire easily and still have the "fog" that I am dealing with.

My Dr, who has been awesome and very supportive, keeps saying I am doing well.  He has advised to give it a year because we are still close to the completion of radiation and chemo. 

  

Am I expecting too much too soon?  Will my salivation improve?   Any suggestions on getting more calories than I am getting now?  I have the go ahead from the Dr to eat anything I want, just eat....I love to cook and am constantly looking for recipes, but still find it's often hit or miss.

Whatever I end up dealing with later, I am pleased with where I have been and where I am going.  I never could have imagined the support that I have had from my family, friends and church.  You never realize this until you are on the needing end of these prayers and support. 

I am happy to wake up every day and see the flowers instead of the roots!

 

Thank you!

SASH

Eating

We are all different in how our bodies come back from treatment.  Some get their saliva function back, others like myself, it is very limited.

Eating is always difficult but does get easier over time, even with the lack of saliva.  You just need to find foods that you can easily get down that have plenty of calories if you continue to lose weight.  There are powders out there at health food stores called weight gain.  These can add hundreds of calories and can be added to your protein shakes.  So even if you just do one serving of this powder a day, it might give you the extra calories needed to either maintain your weight or actually allow you to add a few pounds.

hwt

SASH said:

Eating

We are all different in how our bodies come back from treatment.  Some get their saliva function back, others like myself, it is very limited.

Eating is always difficult but does get easier over time, even with the lack of saliva.  You just need to find foods that you can easily get down that have plenty of calories if you continue to lose weight.  There are powders out there at health food stores called weight gain.  These can add hundreds of calories and can be added to your protein shakes.  So even if you just do one serving of this powder a day, it might give you the extra calories needed to either maintain your weight or actually allow you to add a few pounds.

Ensure

If you are doing ensure note that the ensure plus has an additional 100 calories per bottle. Shakes and malts are good to add calories. Saliva will gradually improve but takes time.

Barbaraek

I'm glad you posted

and introduced yourself! Welcome to the family It's wonderful your last scans came back clean.

People who have not experienced H&N cancer really don't understand what an impact it has on eating and the social nature of food. I know my husband and I never truly appreciated the mechanism of swallowing and how eating and food is woven into everyday life until he underwent treatment for nasopharyngeal cancer.

I confess to being a bit of a foodie and I would rather buy kitchen gadgets and cookbooks than shoes.... That said, I have found a few cookbooks that are helping us adapt to my husband's new eating/swallowing challenges.

SPOHNC (Society for people with Oral and Head and Neck Cancer) has 2 volume cookbooks you can find on their website, titled Eat Well, Stay Nourished. The other two cookbooks I have are Down Easy by Judy Best, and Easy to Swallow, Easy to Chew Cookbook by Weihofen.

If you like to cook, maybe start with one of them and experiment with the recipes in them.

I also bought a Vitamix for making purees and smoothies for my husband (margaritas for me, when he's being stubborn!).

One quick way to boost calories is to add a tablespoon of olive oil to any hot foods. 130 calories, BAM! Since we are at the stage where he is drinking a lot of pureed soups, it's an easy way to boost up the calorie intake without adding sugar.

Good luck on your journey, Flyfisherman and let us know how you are doing,

Barbara

 

hawk711

Hello Flyman

We're all glad you posted her on the CSN site, just hate like hell for the reason.  I am almost 6 years post treatment from Base of tongue, with Mets to the lymphs on the left side.  I did the chemo/rads, but no surgery.  I have the worst dry mouth of many of the posters on this site, I think.  I have found easy ways to add calories, although not all good ones, but all calories are good to me.    

First:  Order some Boost VHC drinks on line, Vanilla is my favorite.  Then buy some Starbucks frappachino (coffee) drinks at your local grocery.  Mix them together, one full VHC and one full frap for a decent drink and get 730 calories.  Boom!   If you did this twice a day, you'll gain weight from the 115 your at now.  I also drink Ensure plus, Vanilla and mix with equal amount of MILK.  Smoother and about 450 calories.  I tried all the blended shakes and got tired of all the Cold drinks.  They all need ice to blend and are very thick too.

Second, Go find yourself some very thick soups, like cream of Artichoke, or Clam chowder.  those usually are quite high in calories too.  I go to a restaurant and get these and they are fresh, and great tasting.  The cream soups are usually higher calories.  I like the post about the olive oil in every hot item also, that I will try too.

I am better now that when I was only 1 year out as you almost are now.  I hate to say it but it does get better with time, or else we just get very used to working around the issues.  Anyway, Private Message me is you have any questions about the dry mouth, I have tried almost every tool out there and can maybe help you.

All the best to you.  Your attitude is great and that is 90% of the fight.  Keep it up and keep moving forward.

Steve

Hawk711

PS   Also go the the first post on this board, Superthread (Read only) ~ contributed by Sweetblood22   Sweetblood has some great ideas also.

wmc

Welcome to the H&N Group

Welcome, but also sorry you need to be here. I do hope your epiglottis gets back to working. I had silent asperation, because mine didn't work very well. Stage 3 Laryngeal cancer and neck dissection on both sides, and removed my larynx. I never had to have chemo or radiation, just cut from ear to ear. For many the saliva does come back slowley, and some not much. You just have to sip when you swallow, but use the products to add sliva as you need it to have your teeth healthy.  Yep, this is something you just can't really talk about with friends. They just can't understand it and others will drift away as they just can't deal will major illness. Many are just wired that way. Laugh and the whole world laughs with you. Cry and you cry alone. 

That is the advantage we have here. We do understand what you are going through and how it can make you feel. It helps just to get it out how you are feeling and even frustration at times, and being tired so much.Why is it taking so long to recope. It takes time that is not measured in days or weeks, it is weeks and months. Most are on there own schedule as many have other health issues. Then there is the why? Don't go there, why does not help or matter. The only thing that does matter is you will beat this. Only today matters, just one day at a time. Later you will see you now have tomorrows as well.

Yes some days are worse then others and you just don't know why. With me some times I can speak real easy [ I have a TEP Prosthesis in my neck to talk] and other times it is hard to get it started. For me and loosing my larynx, it was acceptance is what made the bigest differance, as it is easy to see I breathe through my neck. I new going into surgery what was being taken and I had accepted it already. My thoughts were how will other people accept it. Very well in fack, I were a small filter and nobody really cares. I do everything I did before. Still have COPD stage 3 but I work around that as well.

You are not alone, we do understand, best place you can find to vent, and we are open 24/7

Bill  Oct 2013

ratface

Welcome

Hi Flyfisherman and so glad you found us. It's a chronic disease with differring levels of post treatment abnormalities for everyone. Your outcome has been  something to be celebrated. There is lots of information here , just do some reading and searching and post whenever you have a specific question. I am six years out and still don't have the same level of saliva I had prior to radiation although I can eat almost anything but some things take more effort than others such as bread, rice, pasta. You will have to experiment for yourself. Supplement with liquid calorie boosters or add more fat in the form of oils until your weight starts to climb again. A year is just the beginning, recovery is slowwwwwwwwwwwwwwwww but very very sweeeeeeet!

Flyfisherman

SASH said:

Eating

We are all different in how our bodies come back from treatment.  Some get their saliva function back, others like myself, it is very limited.

Eating is always difficult but does get easier over time, even with the lack of saliva.  You just need to find foods that you can easily get down that have plenty of calories if you continue to lose weight.  There are powders out there at health food stores called weight gain.  These can add hundreds of calories and can be added to your protein shakes.  So even if you just do one serving of this powder a day, it might give you the extra calories needed to either maintain your weight or actually allow you to add a few pounds.

Thank you for your response. 

Thank you for your response.  I appreciate it!

 

Flyfisherman

Barbaraek said:

I'm glad you posted

and introduced yourself! Welcome to the family It's wonderful your last scans came back clean.

People who have not experienced H&N cancer really don't understand what an impact it has on eating and the social nature of food. I know my husband and I never truly appreciated the mechanism of swallowing and how eating and food is woven into everyday life until he underwent treatment for nasopharyngeal cancer.

I confess to being a bit of a foodie and I would rather buy kitchen gadgets and cookbooks than shoes.... That said, I have found a few cookbooks that are helping us adapt to my husband's new eating/swallowing challenges.

SPOHNC (Society for people with Oral and Head and Neck Cancer) has 2 volume cookbooks you can find on their website, titled Eat Well, Stay Nourished. The other two cookbooks I have are Down Easy by Judy Best, and Easy to Swallow, Easy to Chew Cookbook by Weihofen.

If you like to cook, maybe start with one of them and experiment with the recipes in them.

I also bought a Vitamix for making purees and smoothies for my husband (margaritas for me, when he's being stubborn!).

One quick way to boost calories is to add a tablespoon of olive oil to any hot foods. 130 calories, BAM! Since we are at the stage where he is drinking a lot of pureed soups, it's an easy way to boost up the calorie intake without adding sugar.

Good luck on your journey, Flyfisherman and let us know how you are doing,

Barbara

 

I appreciate your support!

I appreciate your support!

Flyfisherman

hawk711 said:

Hello Flyman

We're all glad you posted her on the CSN site, just hate like hell for the reason.  I am almost 6 years post treatment from Base of tongue, with Mets to the lymphs on the left side.  I did the chemo/rads, but no surgery.  I have the worst dry mouth of many of the posters on this site, I think.  I have found easy ways to add calories, although not all good ones, but all calories are good to me.    

First:  Order some Boost VHC drinks on line, Vanilla is my favorite.  Then buy some Starbucks frappachino (coffee) drinks at your local grocery.  Mix them together, one full VHC and one full frap for a decent drink and get 730 calories.  Boom!   If you did this twice a day, you'll gain weight from the 115 your at now.  I also drink Ensure plus, Vanilla and mix with equal amount of MILK.  Smoother and about 450 calories.  I tried all the blended shakes and got tired of all the Cold drinks.  They all need ice to blend and are very thick too.

Second, Go find yourself some very thick soups, like cream of Artichoke, or Clam chowder.  those usually are quite high in calories too.  I go to a restaurant and get these and they are fresh, and great tasting.  The cream soups are usually higher calories.  I like the post about the olive oil in every hot item also, that I will try too.

I am better now that when I was only 1 year out as you almost are now.  I hate to say it but it does get better with time, or else we just get very used to working around the issues.  Anyway, Private Message me is you have any questions about the dry mouth, I have tried almost every tool out there and can maybe help you.

All the best to you.  Your attitude is great and that is 90% of the fight.  Keep it up and keep moving forward.

Steve

Hawk711

PS   Also go the the first post on this board, Superthread (Read only) ~ contributed by Sweetblood22   Sweetblood has some great ideas also.

Thank you so much!

Thank you so much!

Flyfisherman

wmc said:

Welcome to the H&N Group

Welcome, but also sorry you need to be here. I do hope your epiglottis gets back to working. I had silent asperation, because mine didn't work very well. Stage 3 Laryngeal cancer and neck dissection on both sides, and removed my larynx. I never had to have chemo or radiation, just cut from ear to ear. For many the saliva does come back slowley, and some not much. You just have to sip when you swallow, but use the products to add sliva as you need it to have your teeth healthy.  Yep, this is something you just can't really talk about with friends. They just can't understand it and others will drift away as they just can't deal will major illness. Many are just wired that way. Laugh and the whole world laughs with you. Cry and you cry alone. 

That is the advantage we have here. We do understand what you are going through and how it can make you feel. It helps just to get it out how you are feeling and even frustration at times, and being tired so much.Why is it taking so long to recope. It takes time that is not measured in days or weeks, it is weeks and months. Most are on there own schedule as many have other health issues. Then there is the why? Don't go there, why does not help or matter. The only thing that does matter is you will beat this. Only today matters, just one day at a time. Later you will see you now have tomorrows as well.

Yes some days are worse then others and you just don't know why. With me some times I can speak real easy [ I have a TEP Prosthesis in my neck to talk] and other times it is hard to get it started. For me and loosing my larynx, it was acceptance is what made the bigest differance, as it is easy to see I breathe through my neck. I new going into surgery what was being taken and I had accepted it already. My thoughts were how will other people accept it. Very well in fack, I were a small filter and nobody really cares. I do everything I did before. Still have COPD stage 3 but I work around that as well.

You are not alone, we do understand, best place you can find to vent, and we are open 24/7

Bill  Oct 2013

I appreciate your support! 

I appreciate your support!  It is definitely comforting to know there are those out there that do understand!

Flyfisherman

ratface said:

Welcome

Hi Flyfisherman and so glad you found us. It's a chronic disease with differring levels of post treatment abnormalities for everyone. Your outcome has been  something to be celebrated. There is lots of information here , just do some reading and searching and post whenever you have a specific question. I am six years out and still don't have the same level of saliva I had prior to radiation although I can eat almost anything but some things take more effort than others such as bread, rice, pasta. You will have to experiment for yourself. Supplement with liquid calorie boosters or add more fat in the form of oils until your weight starts to climb again. A year is just the beginning, recovery is slowwwwwwwwwwwwwwwww but very very sweeeeeeet!

Thank you!  I appreciate your

Thank you!  I appreciate your thoughts and support!

oldvamp

Flyfisherman said:

Thank you!  I appreciate your

Thank you!  I appreciate your thoughts and support!

Hope it gets easier

I'm just starting to get a few taste buds back, but still don't have any appetite.  I had Stage 4, metastatic base-of-tongue carcinoma and finished up 33 radiation tx plus Cisplatin chemo that ended on Aug. 22, 2015.  My weight was 157 and I went down to 128 lbs.   I have little-to-no saliva output so water bottles are my constant companion.  Eating is challanging but I'm lucky enough to have a wife who is very creative (& unbelievably patient!)

Together we experiment on foods that will keep my weight up.  We managed to get my weight up to 154 and have been holding it between 148 to 151.  I've never been a big eater and have an ungodly speedy metabolism so keeping the pounds on is a big problem.  I also have swallowing difficulties and have recently discovered that one side of my esophogus has quit functioning due to the radiation and chemo.  I'm hoping to see a speech therapist and do some swallow tests soon so maybe they can provide some answers. 

I am writing you to forewarn you of the long-term dangers of over-relying on shakes for your nutrition/weight gain needs.  My wife has researched a lot of cancer studies and found that cancer cells thrive on sugar.  A PET scan is reliant upon radiated glucose to ignite the cancer cells, which puts them into a feeding frenzy.   In actuality, without glucose, they have no other source of energy and will die, whereas normal cells can use ketones as an energy source when sugar is not available.  As a former sugar-holic I can testify that this news can be discouraging to say the least, but don't ever give up.

You may have to give up carbs for the most part, but it's not impossible. 

We are still figuring things out.  Its a journey that I am more than happy to share with you. 

 

Flyfisherman

oldvamp said:

Hope it gets easier

I'm just starting to get a few taste buds back, but still don't have any appetite.  I had Stage 4, metastatic base-of-tongue carcinoma and finished up 33 radiation tx plus Cisplatin chemo that ended on Aug. 22, 2015.  My weight was 157 and I went down to 128 lbs.   I have little-to-no saliva output so water bottles are my constant companion.  Eating is challanging but I'm lucky enough to have a wife who is very creative (& unbelievably patient!)

Together we experiment on foods that will keep my weight up.  We managed to get my weight up to 154 and have been holding it between 148 to 151.  I've never been a big eater and have an ungodly speedy metabolism so keeping the pounds on is a big problem.  I also have swallowing difficulties and have recently discovered that one side of my esophogus has quit functioning due to the radiation and chemo.  I'm hoping to see a speech therapist and do some swallow tests soon so maybe they can provide some answers. 

I am writing you to forewarn you of the long-term dangers of over-relying on shakes for your nutrition/weight gain needs.  My wife has researched a lot of cancer studies and found that cancer cells thrive on sugar.  A PET scan is reliant upon radiated glucose to ignite the cancer cells, which puts them into a feeding frenzy.   In actuality, without glucose, they have no other source of energy and will die, whereas normal cells can use ketones as an energy source when sugar is not available.  As a former sugar-holic I can testify that this news can be discouraging to say the least, but don't ever give up.

You may have to give up carbs for the most part, but it's not impossible. 

We are still figuring things out.  Its a journey that I am more than happy to share with you. 

 

Hope it gets easier

Thank you, Oldvamp!  Seems like we are having the same eating symptoms!  I can barely eat bread, but only with a bottle of water which, I too, keep with me all the time.  I experiment and have found that I do well with flounder and other fishes, pork to an extent, but not chicken which is a little too course and dry for me.  I now eat a lot of vegetables and often order th veggie plates when I don't feel like trying to get a meat down.  I'm at about one Boost per day, so not as many there, but I have lost about 120 lbs (which was good for me, just not how I had to lose it!).  With all the bad things that have gone on, I'm probably eating better and more healthy than I ever have!

I'm fortunate to have had the support of so many people, friends and family.  That's what keeps me going.  My wife and I have recently joined the YMCA to try to rebuild some of the muscle tone that I have lost!  We have already booked our summer vacation to Montana so I definitely want to be in good shape with some strength and stamina for that!

Just keeping on keeping on. 

phrannie51

Flyfisherman said:

Hope it gets easier

Thank you, Oldvamp!  Seems like we are having the same eating symptoms!  I can barely eat bread, but only with a bottle of water which, I too, keep with me all the time.  I experiment and have found that I do well with flounder and other fishes, pork to an extent, but not chicken which is a little too course and dry for me.  I now eat a lot of vegetables and often order th veggie plates when I don't feel like trying to get a meat down.  I'm at about one Boost per day, so not as many there, but I have lost about 120 lbs (which was good for me, just not how I had to lose it!).  With all the bad things that have gone on, I'm probably eating better and more healthy than I ever have!

I'm fortunate to have had the support of so many people, friends and family.  That's what keeps me going.  My wife and I have recently joined the YMCA to try to rebuild some of the muscle tone that I have lost!  We have already booked our summer vacation to Montana so I definitely want to be in good shape with some strength and stamina for that!

Just keeping on keeping on. 

The trick to bread...

Buy crusty French or Italian....make a pot of home made soup, any kind will do...potato, veggie, chicken and rice or noodle...Slather said bread in butter, and soak it one bite at a time in soup.  The crust gives texture, the butter and soup give it liquid...the calories help weight gain....I'm three years out, and I still have this meal .

p