What is worse then not having Saliva.

Hondo

 

After both my radiation treatments were over and having too drink water with all my food I thought that there was nothing worse then loosing my Saliva glands; well I found out that there is. As many of you know I am unable to swallow due to nerve damage from all the treatments. Not being able to swallow is something I wish on no one not even an enemy. It is one thing not to be able to swallow for a few months while going through radiation treatment. But not being able to swallow for the rest of your life is something totally different and very hard to get use to. I was OK with it until my Saliva glands decided to start working again, what do you do when you can’t swallow and have too much Saliva. You guess it you spit, it is very embarrassing when you are talking to someone and have to stop and spit or when you are in Church praying and need to stop praying because your mouth is full of Saliva and there is no place to spit. Another problem I have is that it is hard to spit because the soft palate was also damage with treatment and that lets too much air go out the nose when trying to spit. So before spitting I must squeeze my nose together with my fingers and hold it tight then try to spit as hard as I can. Yet one more problem, not being able to swallow causes a very bad smell to come out of my mouth. It is not bad breath from not brushing it is because during digestion some of the food goes back up the esophageal to the mouth and gets trapped there. I can’t rinse it down because water will go into my lungs, so this food residue decomposes in my esophageal making the worse smell you can image. I can’t smell it but when I see people I am talking to back up 10 to 15 feet away I know something is wrong.

 

I have found some products that help with the bad odor and I try not to talk directly to people when in a conversation. Most of my family and friends know what I have been through so they just try to treatment me as normal as they can. Oh well just another part of everyday life we learn to cope with.

 

God Bless you all

Hondo

longtermsurvivor

thats a lot

to have to work around sir.  I know you've been down this road enough that you've asked for whatever other help they can give you with this.  Can't offer advice as I don't know.  wishing you the best.

 

Pat

lornal

Rough

That sounds rough.  I take it dilations doen't help with your problem.  I can still swallow lquids, and know to  see the doc again when it gets harder, esp if I can't swallow the saliva.  I have always had a fear of drowning, even at a young age.  Now, here I am at 51, and I need to be careful of that on a daily basis.  I've no advise yet - as you are my advisor.

God Bless you too Hondo.

 

Lorna

corleone

Have you discussed (with MDs)

Have you discussed (with MDs) the use of anticholinergics? There are different types that can be used (Transdermal scopolamine or even the more drastic Botulinum therapy), but they also have side effects.

katenorwood

Hello Tim !

You dear man are simply amazing !  I hate that you have to go through all of these situations just to try to live a normal (o.k. abi) life.  Know my thoughts and prayers are with you always !  Katie

hwt

katenorwood said:

Hello Tim !

You dear man are simply amazing !  I hate that you have to go through all of these situations just to try to live a normal (o.k. abi) life.  Know my thoughts and prayers are with you always !  Katie

Tim

So sorry to hear of another hurdle for you. Your continued strength is such an inspiration to us. Hopeful that the extra saliva will show benefits for you in other areas. As always, prayers coming your way. The only suggestion that I have to offer is that you might try using Viva paper towels. They hold up a thousand times better than your average kleenex and they are the only paper towel soft enough not to irritate your face. 

Candi 

MarineE5

Paper towels

Hondo,

I am sorry to read the difficulties that you are having. Unfortunately, I don't have a perfect solution. I do carry paper towels ( as Candi mentioned) cut in half and folded up in my back pocket in the event I am somewhere that I can't spit outdoors. Yes, it does get alittle embarrassing when we are trying to hold what we consider a normal conversation and then the dreaded feeling in our throat appears. We almost choke trying to not gag on our words.

Bad breath was a concern of mine when I was working in a Big Box store and had to deal with customers each day. I chewed gum and would sip a tiny bit of water to keep the gum moist enough to allow a tiny bit of moisture in my mouth. I tried many gums and allot of them didn't work for me. I finally found that Denetine Artic Ice worked for me, why? I don't know, but it does. I also keep on hand the small bottle of Biotene dry mouth spray and give a squirt now and again, not to much, just enough to again moisten my mouth.

You sir have been down several rough paths and always seem to find a way to get thru them. This will not be any different. You WILL find a solution that fits you.

My Best to You and Everyone Here

 

debbiejeanne

dear tim, it seems every side

dear tim, it seems every side effect finds its way 2 u but it also seems that ur strength and positive attitude compensate for each and every one!!  u r always positive and upbeat and thats very important.  with people like u, candi, katie, nick and the others show the rest of us that we have much to be thankful for.  i'm sorry that u r having this new trouble.  i pray for u and everyone else here everyday!  we r truly a cyber family and i'm very thankful 4 all of u!!  God bless u and everyone!

dj

TracyLynn72

I'm so amazed

by your strength, courage, and positive attitude!  You inspire us all.  May God bless you!!  Your strong faith is such a blessing for me to read about! 

jackflash22

spit

I'm feel for you immenslely, i'm going through the too much sticky mucous stage and talk to people as if I have a mouth full. I carry tissue and as discreatly as i can, I turn my head and 'pull' the saliva/mucous from my mouth. i also use sponges on a stick you twirl them in your mouth and it gathers the spit/mucous from your mouth and leaves the mouth clean for a while BUT next thing I get is a dry mouth and my lips stick to my teeth and my tongue to the roof of my mouth. I know I shall (I hope) see an end to it after the treatment unlike you having to live through it for ever.  You can from the doc get a suction device to gather the saliva. I also find having a bowl of hot steaming water with a drop of opus oil or euclyptus granules then sit over it with a towel over your head it loosens up your lungs and you can breathe more clearly ,it loosens everything so you can have a good purge. The sponges on sticks you can buy from Amazon.

Hondo

Thanks

Hi everyone, and thanks for your help and support. I remember hearing one scientist say that no matter what life will always find a way. It is like that with all of us, we get knock down and beat-up pretty bad sometimes but we all find a way to keep going no matter what obstacle pop up in our way. Just remember if we ever have a CSN reunion you will know me before you see me. J

 

Yesterday we were celebrating my Wife birthday so everyone was at my Daughter house and holding my little one year old granddaughter. The problem was she did not want any of them she wanted Papa, the second she seen me walk in she started making that little noise and holding her arms out toward me. That is what makes going through all of this worth it, just to be there for them and hold them and love them. No matter what happens keeping focus on the things that matter that is what will help us through the trials of life.   

 

PS: Got my bottle of eucalyptus sitting here on my desk, great stuff.

 

God is still so good.

Tim Hondo

fishmanpa

Hondo said:

Thanks

Hi everyone, and thanks for your help and support. I remember hearing one scientist say that no matter what life will always find a way. It is like that with all of us, we get knock down and beat-up pretty bad sometimes but we all find a way to keep going no matter what obstacle pop up in our way. Just remember if we ever have a CSN reunion you will know me before you see me. J

 

Yesterday we were celebrating my Wife birthday so everyone was at my Daughter house and holding my little one year old granddaughter. The problem was she did not want any of them she wanted Papa, the second she seen me walk in she started making that little noise and holding her arms out toward me. That is what makes going through all of this worth it, just to be there for them and hold them and love them. No matter what happens keeping focus on the things that matter that is what will help us through the trials of life.   

 

PS: Got my bottle of eucalyptus sitting here on my desk, great stuff.

 

God is still so good.

Tim Hondo

Inspiration

Tim, 

I know without any doubt that God has kept me on this Earth for a reason. Based on what has taken place in my life that last 6 years. I shouldn't be here. When questioning my doctors about my heart attacks, both times. one of the reasons they said I was here was... they pointed upwards.

You Sir, are an inspiration and there's no doubt you're here for a reason. I thank you for your positivity and strength in faith.

Positive thoughts and prayers

"T"

 

 

donfoo

Wish you the best

Hi Tim,

I don't have any medical ideas for you but want to know I only hope you find some solutions that allow you to carry on as normally as possible. You got the right attitude, just need some medical tips to get you past this situation. Maybe your nerves will heal soon and you'll be swallowing again. don

jim and i

Hondo said:

Thanks

Hi everyone, and thanks for your help and support. I remember hearing one scientist say that no matter what life will always find a way. It is like that with all of us, we get knock down and beat-up pretty bad sometimes but we all find a way to keep going no matter what obstacle pop up in our way. Just remember if we ever have a CSN reunion you will know me before you see me. J

 

Yesterday we were celebrating my Wife birthday so everyone was at my Daughter house and holding my little one year old granddaughter. The problem was she did not want any of them she wanted Papa, the second she seen me walk in she started making that little noise and holding her arms out toward me. That is what makes going through all of this worth it, just to be there for them and hold them and love them. No matter what happens keeping focus on the things that matter that is what will help us through the trials of life.   

 

PS: Got my bottle of eucalyptus sitting here on my desk, great stuff.

 

God is still so good.

Tim Hondo

Tim, I feel bad that you are

Tim, I feel bad that you are having to go through yet another trying side effect, yet I know that God will give you the strength yo carry on. I agree with you that those things aka grands, spouse etc, are what makes all this doable. May God continue to bless you and yours.

Debbie

CivilMatt

thr bar gets higher

Hondo,

You have said a mouthful and I have started a new chapter in my book “H&N cancer and how it has changed me (and my friends)”. 

I wish you only the best.

Matt

KTeacher

Oh Tim!

You have gone through so much.  I thank you for sharing the not so fun aspects of long term survival--it can hit any one of us that have gone through treatment.  You have been positive, encouraging and supportive.  I also find my time with grandchildren a blessing.  We just returned from Oregon, saw my daughter and 14 month old granddaughter and helped with boyfriend after double knee surgery.

Hondo

ENT Visit

I seen my ENT yesterday and was talking to her about the bad breath problem and why I can get rid of it. She said two reasons; one is because of the constant decay of scar tissue in the nasal area, the other might be from a build-up of food residue in the throat. She is going to have me do a Swallowing test to see if it is the food residue and if it is she thinks that maybe stretching the throat might keep the residue from building up, it’s worth a try.   

Hope you don't smell anything while reading this, I am holding my bearth, Sometimes we just have to look at life and laugh at what it brings us

 

Thanks everyone

Tim Hondo    

debbiejeanne

Hondo said:

ENT Visit

I seen my ENT yesterday and was talking to her about the bad breath problem and why I can get rid of it. She said two reasons; one is because of the constant decay of scar tissue in the nasal area, the other might be from a build-up of food residue in the throat. She is going to have me do a Swallowing test to see if it is the food residue and if it is she thinks that maybe stretching the throat might keep the residue from building up, it’s worth a try.   

Hope you don't smell anything while reading this, I am holding my bearth, Sometimes we just have to look at life and laugh at what it brings us

 

Thanks everyone

Tim Hondo    

hondo, good luck w/the

hondo, good luck w/the stretching.  let us know how it goes.  i hope it solves the problem.

God bless,

dj

donfoo

Hondo said:

ENT Visit

I seen my ENT yesterday and was talking to her about the bad breath problem and why I can get rid of it. She said two reasons; one is because of the constant decay of scar tissue in the nasal area, the other might be from a build-up of food residue in the throat. She is going to have me do a Swallowing test to see if it is the food residue and if it is she thinks that maybe stretching the throat might keep the residue from building up, it’s worth a try.   

Hope you don't smell anything while reading this, I am holding my bearth, Sometimes we just have to look at life and laugh at what it brings us

 

Thanks everyone

Tim Hondo    

tissue decay

Hi Tim,

Before I was diagnosed, I had a very bad breath issue too. It turned out the BOT primary was necrotic and that decaying and rotting ulcer down there was causing all the stink. After the first round of chemo it was gone.

FYI - NOTHING else I tried did any good and surely not recommending you get chemo to stop bad breath. lol

 Good luck. don

Duggie88

Tim

Attitude is the biggest part of the battle. And you seem to have that licked. (just don't swallow). We all have to live with our own unique side effects and that is why we are individuals. Many times while trying to eat solids something may get caught in my throat and I have to do sme hacking so I can swallow it. It reminds me of the movie Christmas vacation when Eddie's dog was hacking upon something under the dinner table.

Your a lucky man with your family treating you as normal. Mine treat me like the abi-normal I am.

Life is good..........enjoy the day

      Jeff

Crazymom

spitting

thanks so much for your post...I was all angry today because someone did not treat my son right at boy scouts.  I realize now how petty that problem is. 

I carry an empty plastic Gatorade bottle (bigger spout than a coke bottle).  It is easy to spit into.  I can spit into it pretty discretely, put on the top and put it back into my bag.  It is particularly useful in the car when I need to spit up.  I take it to church and no one hardly notices.

Hope it gets better.    Ann