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Susanmorr
Posts: 14
Joined: May 2013

I really thought by now I would be doing great but I'm not . My saliva glands were working then quit was starting to eat getting back to being me then bam quit working no saliva for 3 weeks now the dry mouth is horrible I have tried it all all I can do is sip water all the time. Can't eat or talk have not been out of the house except for doctors . Was really hoping to get rid of my feeding tube when i go for my scan August 5 but not now . It's been five and half months. stage 4 tonsil cancer sucks . I hate to always post downers but you guys are the only people who understand I feel like I'm becoming a burden to my family. I just want to get better . 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Oh Susan I know exactly how you feel ! I think the dry mouth is just as horrible as the Mucus is . I do think it is "normal" to have dry mouth for several months from what I read on here . I don't mean to bring you down more , just want you to hang in there and hopefully with time we will get better . The only relief I get is after I eat or drink some kind of milk product . It seems to cause mucus for a little while and to me that feels better than my dry throat and mouth . I also use a product I ordered on line that was sugested on here called Stoppers4 at bedtime and then usually again in the night to help me sleep . It can be used as often as you need it for your dry mouth . Maybe that would help you some . My last Rad. tx was last Oct. 26th and my taste is getting better now but my dry mouth is not. I hope you find something that helps .

Peggy

CivilMatt's picture
CivilMatt
Posts: 2981
Joined: May 2012

Susan,

I am sorry you are having a horrible time with the side effects of treatments.  You have been keeping up with your doctor appointments so all is probably well, just a slow boat to healing.

I was stage IVa, bot, scc and at 4 months I still had a long way to go before I could seriously stand to eat and today at 16 months I still battle dry mouth.

Provided your doctors see no problems, your body probably took a serious beating from treatments.  How do things compare to a week after treatments?  Are they better?

I agree with you, most people do not get it, but the H&N crew does.

Good luck on feeling better

Matt

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Kind of how it goes for awhile...

You're doing better than you think... At your stage I didn't even have the saliva or taste even for the brief period you do...

At tow years out, I completely had all taste and 95% of my saliva back.

It was much sooner than that for the majority, but that is where I am now going into my fifth year post Tx...

JG

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Susan, four months is still at the beginning, of recovery.  Recovery takes lots of time and patience, so you need to lower your expectations regarding the speed of recovery, and just roll with the setbacks, as you will eventually spring forward again.  In regard to the dry mouth, I used Mouth Kote spray for years, I always had a small spray bottle in my pocket, until my sliva magically returned a couple of years ago.  Hang in there, life will get better, but it is, I have found, one of those one day at a time kind of things.

PATRICK

Duggie88's picture
Duggie88
Posts: 542
Joined: Feb 2010

It does get better and it will for you within your own time frame. Just hang in there, don't sit and sip, get up and move and groove, take your bottle of water and do things that you enjoy doing. Life seems to be at a stand still because your allowing it. I don't mean get up and run a marathon, but get out and go to the mall and just walk from one end to the other. Go telll a politician how much he sucks. Whatever it takes to put a smile on your face ya gotta get out and do it.

Sorry if I come across to aggresiveI am only trying to light a fire.

Enjoy the day

      Jeff

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Susan,

This is such a slow process and like John said, sometimes it's one step forward, two steps back. Other times, it's two steps forward and one back... It varies day to day, week to week and month to month. From the OC forums I participate in, it's become apparent that it may be upwards of 6 months to a year or more before we truly return to some sense of normalcy. And even at that, it's more like the infamous "abi-normal" than the normal we have in mind.

I expected to be further along at 3 months out than I am but I'm not. I have a bit of thicker saliva in the mornings and this morning I actually had some real saliva flow on the right side of my mouth for about 5 minutes but it's gone within an hour of waking and Peter O'Toole comes visiting on his horse in the desert that is my mouth the vast majority of the time. That along with all the other side effects is so frustrating! Knowing it takes time and knowing recovery is slow doesn't always quell the frustration. 

All we can do is hang in there and try to maintain a positive attitude. Sometimes we need to vent and this forum and the support it brings is a Godsend. So hang in there, make sure to do your swallowing exercises. If you don't have them, let me know and I'll post what my SLP gave me at Johns Hopkins. They're difficult as hell but worth doing and have made a big difference in my progress concerning swallowing and eating. 

Positive thoughts and prayers,

"T"

Susanmorr
Posts: 14
Joined: May 2013

I don't have them that would be most

 helpful thanks

      Susan

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Susan, 

Here are the exercises given to me by my Speech/Language Pathologist at Johns Hopkins. 

 

Swallowing Exercises

 

Falsetto Phonation or “Sirening”

Make a siren noise from a low pitch to a high pitch. Use a “ng” sound. Hold the pitch for 2-3 seconds. Repeat 10X, 3 sets, twice daily.

 

Masako Maneuver

Protrude tongue slightly between your front teeth. Hold tongue in this position by bearing down gently with your teeth. Swallow while keeping tongue protruded. Use this technique several times daily when swallowing your own secretions (water if you have no saliva). Repeat 10X, 3 sets, twice daily.

 

Effortful Swallow

Keep your mouth closed and the tip of your tongue elevated to your palate. Swallow as strong as you can, focusing on squeezing with your throat muscles (like you have something stuck in your throat and you have to get it down), repeat 10X, 3 sets, twice daily.

 

Mendelsohn Maneuver

 

Place fingers gently on your neck to feel how the larynx/voice box rises when you swallow. When you feel your larynx rise to it’s highest point, try to hold the larynx in an elevated position for 5 seconds. Repeat 10X, 3 sets, twice daily.

TracyLynn72's picture
TracyLynn72
Posts: 717
Joined: May 2013

I am so sorry that you're dealing with all of this!  It's such an up and down experience! I hope things greatly improve for you....and SOON!!

phrannie51's picture
phrannie51
Posts: 3744
Joined: Mar 2012

5 1/2 months out still puts you in the baby stage of recovery.  I liked what Duggie said...."grab your water bottle and do stuff you like"....it takes a lot of time for all your energy to return, and longer for saliva (for most of us anyway).  I'm 13 months out of radiation....11 months out of all treatment, and my water bottle still goes with me everywhere.  I eat soup most the time, tho I try everything (and that is EVERYTHING) else.  Somethings just don't go down as well....meat for one, crackers, bread, you know...the dryer foods...but they will go down with water or milk at my side.

Do try what Peggylulu said about the milk, for some relief from drymouth.  Milk gives a person the illusion they have saliva for a little while.  Be patient....

p

Laralyn's picture
Laralyn
Posts: 449
Joined: Apr 2012

I also had Stage IV tonsil cancer and yes, recovery does take a while. The time does pass, though, and you eventually start to feel a lot more normal. My ENT had a piece of good advice: every Friday, jot down how you felt that week--what was a little better, what you still struggled with, what frustrated you the most about recovery. Then put it away and don't look at it again until you update it the next Friday. After a month, go back and read your first entry... and you'll see how you've improved. Sometimes the progress from day-to-day feels so slow that you feel like it's not happening, and this helps give you perspective.

There will also be moments where you've improved without realizing it. I remember a day when I was visiting my family for Christmas that I didn't realize until afterward that I had eaten an entire dinner salad without having to drink any water. I had swallowing issues (still have a few) and if I hadn't realized it, I wouldn't have had that marker that really told me things had improved!

Hang in there--it does get better!

cureitall66's picture
cureitall66
Posts: 863
Joined: Aug 2012

Everyone is different with their recovery. Some days seem worse than other days....but I'm sure if you look back, you will find you've come a long ways...and for the good.

The saliva seems to be an issue for everyone. My loved one has been out 6 months and still complains of his dry mouth and lack of saliva. He keeps his bottle of water with him constantly. While eating it's not uncommon to have several glasses of water to wash it down. But, in reality, we must admit it has gotten better than what it was....at least he's swallowing water!

Hang in there...it will get better. I know it's hard to be patient and you want back some of your normal very quickly, but it will come at it's own pace.

Do as Jeff suggested and get out there and move around and do something...it may get your mind off the problem.

~C

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

i will be 8 months post treatment soon and i still have swollowing problems - i just keep drinking plenty of water with my meals and ensure - i personnely am grateful i can eat meals - you will be rid of the tube soon just have patience. any progress with this disease is measured in months and years not weeks and days. hang in there and stay strong

Noellesmom
Posts: 1304
Joined: Aug 2010

Jim faithfully did saline rinse and used Biotene spray.

Although I am convinced his salivary glands were spared for the most part, he stlll battled dry mouth.

Remember: if you are truly dehydrated (i.e., been working in the sun too long) you can't just drink water and get rehydrated - you have to have salt, also.  That's why Gateorade, etc., has salt in it.  Rinse with salt water.  Use the Biotene mouthwash and spray to add moisture.

Everybody's different but I think it is worth a try.

And don't be in a hurry to lose the feeding tube: the weight loss effects of radiation did not hit Jim until a few months after treatment ended and he rapidly lost fifty pounds which he has since regained.

Hang in there - I agree with the others - you are doing better than you might think.  It's just tough.

jim and i's picture
jim and i
Posts: 1635
Joined: May 2011

I know it is hard but it will get better. Jim went back and forth on the saliva for months too. Do not worry about being a burden on family. They love you and would never consider you a burden.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Sorry to be posting so late on this post ...but just so you know, I am now 20 months out from my last rad, getting NED's so far and my taste buds came back about 85%  several months after my last rad, then left again for several months ..and now at 20 months have just started coming back (I'd say about 50% back almost overnight).  My saliva has always been gone, but about  a month ago my saliva glands started "firing" up as I call it ...like when you were normal before treatments and you would be hungry and or see a wonderful peice of chocolate cake ..bugged me at first ..then when out hunting one day I popped a candy bar in my mouth ..and guess what ...I was able to eat and swallow it (slowly) without any water ....now at 20 months I belive I can say my salive is returing...slowly, but returning ...

Bottom line is we contineu to heal at our own pace, every persons body is different ... you will get there.  As a father of five children ages 2-14 I totally get the "stop being a burden to my family" feelnig ...no parent wants there kids to see them so sick and worry ...but remember your family loves you ..and yes, they too may be tired of you being sick or not fully back to normal...but not for lack of love, just becuase they love you!!!  Hang tough....you will improve!!!

 

Tim

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

i am coming up on 8 months post treatment and it still sucks - going to my ENT today to have a look at my mouth and throat. some times i will just be cruising along and then BAM the gift that keeps giving - tingling extremities, ringing in the ear, fatigue or thrush - other crap too but it is what it is - my saliver comes and goes, whenever i eat i have to spit up i hate this crap too. you will be rid of your feeding tube before you know it. keep fighting - thats all we can do - your a survivor and a warrior - i know its easier said than done but stay possitive. what i have learned is that progress with this disease is measured in months and not in days or weeks. have patience and keep getting yourprotein,  nutriants, vitamins and calories - you will soon be on the road to independance. Stay strong fellow warrior.

good luck,

Ralph

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