No saliva

Dennis from Kansas

Hi everyone ive been reading all the topics and keep hopeing I could give some helpful advice,buti seems like I am dumbfounded.I am one year post treatment all my scans have come back NED.What im wondering has anyone had a problem with saliva not comeing back or taste buds.I never have got hungry.I live on Boost and oatmeal.My wife is fulstrated as she has tried to fix me all kinds of difernt foods but I cant get them down.Im going to a speech therapist to see if she can help me in any way.My radioligist says I may never get my saliva back or taste buds.Has anyone heard of that happening to anyone?

 

Peneloppe

Hi, what helped my husband a

Hi, what helped my husband a little was to drink milk with his meal, easier to swallow, it coats better than water.

 

the doctors told him that  the saliva issue might be permanent but it is improving slowly

 

good luck

CivilMatt

try this, then that, don't quit!

DfromK,

If you read enough you will find a few who did not (or not much) get their taste back and most of us have some degree of decrease (or lack of) saliva.

Many of us see improvements to these two issues after one, two, three, years.  It happens, I live it.

From the first day post I was always trying something.  There were a lot of hits and misses.  It took 7 months for my taste buds to (overnight) switch back on. 

I still drink lots of water daily, but often go hours between sips.  I use xylimelt tablets and other xylitol products, but saliva conditions are much better after 5 years than after 1 year.

It sucks, but some H&N members, while cured from cancer are not cured from dry mouth and bland taste buds.

Before, I would give in to these conditions I would make another run at trying everything (throw the cook book at it). 

As a side note, it is generally impossible for the care giver to cook your way out. So don’t be too hard on them.

Matt

Dennis from Kansas

No saliva

Thanks for the input,im drinking six to seven bottles of water a day just to keep my mouth lubercated as it trys to stick shut.I wake up in a panic as my mouth has this thick goo.My nose runs all the time,my throat doctor tells me its my saliva glads that have no where to go,so I dont know what to think.I have got more support from all the people on this site as my doctors really only know what to try to kill the cancer,anyway thats what they tell me.Thanks agin for all the input

murphy97

I’m in the same boat, no

I’m in the same boat, no saliva but I do have tons of mucous.  I can swallow water but it’s not easy.  Eating is via a PEG tube.

I had cancer in salivary gland & I dont know if it will ever come back. I was sent for a teeth cleaning before radiation but was not made aware of what radiation does to your teeth and lack of saliva makes it more to be concerned about.  I’ve spent the last few days reading everything I can including searching discussions and reading the experiences of others.  I hope your saliva returns and mine too!  In the meantime do what you can to protect your teeth.

Good luck.

 

Sprint Car Dude

For Sure.

Welcome to the club. As Matt puts it, welcome to the new normal. We never know what that may be. Some I seem to have a little salvia, other times I am chugging water to swallow everything. My distaste for fruit is my worst enemy. I used to love fruit. Now it is putrid to me. Good Luck finding you new normal. It sure is a wild and crazy ride sometimes. I truely do believe that my saliva is increasing ever so slightly. Drink up......

AnotherSurvivor

The subject line of Matt's

The subject line of Matt's post pretty well captures it.  At one year post my saliva changes daily.  Sometimes close to old normal, sometimes completely different, but ample amounts of water are always beneficial.   Taste is also not at a steady state, but workable.  I have concluded that a lot of our taste, beyond the basics like sweet and sour, are probably 'learned' over time, and need to be reaquired through practice.  When I first began to migrate off protein shakes I found coffee to be incredibly foul tasting.  After four months of serious practice my addiction is fully restored, although I am more selective on blend.   Beer is the same story, although the extremes are more pronounced. Beers I didn't like before are now very bad.  The main point tho, is that condition changes constantly.  My new normal seems to be that everything is transitional. 

Dean54

Hope yours get's better Dennis

I have the same problem especially when I exercise or talk to much, mouth gets dry as dust.Also have the same problem with mucous especially at nite and first thing in the morning. I haven't ventured to far out from the liquids for my nutrition altho I did get some brothy soup down a few times.

Yes it will be a long ride before I can eat anything normal again.

dwp155

Hang in there!

It's a ride.  As everyone has said daily changes are the norm.  I have found that the simpler the food the better I taste.  Spices and multiple flavors like pizza, lasgna, tacos qickly become muddled and unsatisfying. We got a new lease on life it is up to us to learn to enjoy it!

Curlyn

AnotherSurvivor said:

Beer

I received an email via this site's messaging app, but I haven't been able to respond.  The question was in regard to alcohol and +HPV SCC, possibly related to my comment on beer consumption.

My chemo oncol and I discussed this back during my Quest-for-Origins phase.  There is NO link identified between acquiring +HPV and alcohol.  Head and Neck cancer has been around for probably millennia.  Our forefathers, particularly the WW II generation, picked up some pretty bad habits, smoking being the worst.  When I came of age in the Navy in the Pacific in the 60s-70s I also saw a pretty fair number of that generation with addictions to hard alcohol in practically any form.   They prided themselves in being hard living men with grit, but that life style comes with a pretty steep cost at the end (the end being late 40s to late 50s) and a pretty fair number left the Navy headed to VA hospitals.  VA hospitals were the main repository for H&N treatment knowledge up until the 1990s when things began to change with the spread of +HPV.  The main point tho, is that a great many patients were male, older, and regular users of tabbaco and alcohol.  The record of that linkage persists.

+HPV is a viral desease, and shows minimal linkage to tabbaco and alcohol use.  When it started showing up in large numbers in the late 1980s medical types found it baffling.  I was 'lucky' enough to get one of the nurses who was there when this mysterious new illness started showing up, we talked a lot, including about our fathers and the VA experience.  Point tho, is with +HPV they suddenly had H&N cancer patients in their teens who had no history of tabbaco and alcohol use.  Eventually they made the obvious connection between HPV in women parts, and HPV in the male throat and decided it was sexually transmitted.  I'm a bit of a gritty old man myself so I have no discomfort for my possible past liaisons, but I also have done a lot of graduate study in statistical sciences and am a bit of a **** when I find conclusions drawn from spotty science.  The smoking gun should be an epidemiological study that identifies a direct causal link between multiple pairs of hims and hers.  I've spent a pretty fair amount of time looking and I cannot find that study.  Both my kid the ER doc (who is use to rigorous exam of his faulty logic), and my very gratious and patient chemo oncol have pronounced themselves satisfied with the science plus it wouldn't change treatment modalities anyway.  Both see no issues with 'reasonable' consumption of alcohol post-treatment, both consider tabbaco consumption suicidal, and neither smoke dope even tho it's legal here.  Chemo onc is a wine snob, ER son has a taste for single malts and aged brandies he can't afford so he drinks mine.  Immediately post treatment we experienced a visitation of medical residents of Visagothic proportion, so I am not sure how well my taste has recovered.

BUT! 'reasonable' amounts of beer is okay, especially ales, porters, and stouts.  No one should drink blond beer, not even Germans.  Not even the English.

 

I would like to add that they

I would like to add that they really dont know enough about HPV to say definitively what all the causes could be. It was always thought to be sex with multiple partners but there are those who dont fit this profile. Furthermore, I was told that there seems to be high risk activities in hospital workers that places them at high risk, especially nurses. Today there are better protective coverings to protect against patients hemorrhaging or getting other risky body fluids on staff but not so even 10 yrs ago. Think SARS and the havoc that caused. One can only hope that funds continue to roll into research where it is needed for this terrible disease.

TheDrj820

my theory

There could be other ways, like french kissing someone with oral hpv And transmission from mother to child at birth. But i am pretty confident in my steep research on the subject. Tons of people have oral sex. We are not the only ones. The issue is when you have oral sex with someone who has hpv16 and you don't already have it in the genital area. I believe it is similiar to how a vaccine works. Once our bodies are exposed, most will develop antibodies to fight off future infections. Our bodies either didn't develop the appropriate antibodies and we became host of the virus in two locations, or the oral cavity became the first host. this is my guess for why more of the country isn't rotting with oral cancer. I know it's not about multiple partners bc I've only had two, I just chose oral first bc I wanted to be safe. Meh. Pretty unlucky we are.

i do not believe "99%" of men clear this virus when it is an initial exposure. I just think most don't have it in the throat because they already have the infection somewhere else. Where we went wrong was where our first exposure was, not that we are 1 in a billion who can't defeat the virus before problems arise. Just my 2 cents.

AnotherSurvivor

Beer

I received an email via this site's messaging app, but I haven't been able to respond.  The question was in regard to alcohol and +HPV SCC, possibly related to my comment on beer consumption.

My chemo oncol and I discussed this back during my Quest-for-Origins phase.  There is NO link identified between acquiring +HPV and alcohol.  Head and Neck cancer has been around for probably millennia.  Our forefathers, particularly the WW II generation, picked up some pretty bad habits, smoking being the worst.  When I came of age in the Navy in the Pacific in the 60s-70s I also saw a pretty fair number of that generation with addictions to hard alcohol in practically any form.   They prided themselves in being hard living men with grit, but that life style comes with a pretty steep cost at the end (the end being late 40s to late 50s) and a pretty fair number left the Navy headed to VA hospitals.  VA hospitals were the main repository for H&N treatment knowledge up until the 1990s when things began to change with the spread of +HPV.  The main point tho, is that a great many patients were male, older, and regular users of tabbaco and alcohol.  The record of that linkage persists.

+HPV is a viral desease, and shows minimal linkage to tabbaco and alcohol use.  When it started showing up in large numbers in the late 1980s medical types found it baffling.  I was 'lucky' enough to get one of the nurses who was there when this mysterious new illness started showing up, we talked a lot, including about our fathers and the VA experience.  Point tho, is with +HPV they suddenly had H&N cancer patients in their teens who had no history of tabbaco and alcohol use.  Eventually they made the obvious connection between HPV in women parts, and HPV in the male throat and decided it was sexually transmitted.  I'm a bit of a gritty old man myself so I have no discomfort for my possible past liaisons, but I also have done a lot of graduate study in statistical sciences and am a bit of a **** when I find conclusions drawn from spotty science.  The smoking gun should be an epidemiological study that identifies a direct causal link between multiple pairs of hims and hers.  I've spent a pretty fair amount of time looking and I cannot find that study.  Both my kid the ER doc (who is use to rigorous exam of his faulty logic), and my very gratious and patient chemo oncol have pronounced themselves satisfied with the science plus it wouldn't change treatment modalities anyway.  Both see no issues with 'reasonable' consumption of alcohol post-treatment, both consider tabbaco consumption suicidal, and neither smoke dope even tho it's legal here.  Chemo onc is a wine snob, ER son has a taste for single malts and aged brandies he can't afford so he drinks mine.  Immediately post treatment we experienced a visitation of medical residents of Visagothic proportion, so I am not sure how well my taste has recovered.

BUT! 'reasonable' amounts of beer is okay, especially ales, porters, and stouts.  No one should drink blond beer, not even Germans.  Not even the English.

 

AnotherSurvivor

Well, while there is no

Well, while there is no shortage of younger victims, the fact is this tends to hit an older crowd most frequently, so I would suspect creeping decrepitude.  It can serve as a useful moral lesson when lecturing the young.  I spent a crash run to the local ER laughing at a couple of young EMTs who had not previously known about the linkage.  There is no humor like sick and twisted humor.

Curlyn

TheDrj820 said:

my theory

There could be other ways, like french kissing someone with oral hpv And transmission from mother to child at birth. But i am pretty confident in my steep research on the subject. Tons of people have oral sex. We are not the only ones. The issue is when you have oral sex with someone who has hpv16 and you don't already have it in the genital area. I believe it is similiar to how a vaccine works. Once our bodies are exposed, most will develop antibodies to fight off future infections. Our bodies either didn't develop the appropriate antibodies and we became host of the virus in two locations, or the oral cavity became the first host. this is my guess for why more of the country isn't rotting with oral cancer. I know it's not about multiple partners bc I've only had two, I just chose oral first bc I wanted to be safe. Meh. Pretty unlucky we are.

i do not believe "99%" of men clear this virus when it is an initial exposure. I just think most don't have it in the throat because they already have the infection somewhere else. Where we went wrong was where our first exposure was, not that we are 1 in a billion who can't defeat the virus before problems arise. Just my 2 cents.

Hi, I am just pointing out

Hi, I am just pointing out that though we have all done a lot of research, the research and treatment is nowhere near definitive on this ugly virus. Neither is the medical community in total agreement. There are still unanswered questions and it requires an open mind to find those answers, and ask the appropriate questions. No story can be dismissed without full investigation. Viruses are capable of mutation, does this one mutate? I dont know. Because of the multitude of people affected, and the changing face of H&N cancer, I think the answers will come sooner than later.What if it was discovered that a nurse got it from a patient following a bad needle stick- think of the political fallout if thousands applied for disbility work benefit..Back in the 80s there was talk of viruses causing all cancer. So many questions. I hope to do some fund raising when I am stronger.

Curlyn

AnotherSurvivor said:

Well, while there is no

Well, while there is no shortage of younger victims, the fact is this tends to hit an older crowd most frequently, so I would suspect creeping decrepitude.  It can serve as a useful moral lesson when lecturing the young.  I spent a crash run to the local ER laughing at a couple of young EMTs who had not previously known about the linkage.  There is no humor like sick and twisted humor.

By older? 30s, 40s? We have

By older? 30s, 40s? We have to dispell the stigma attached to this disease. Most of us do not deserve that. I hate it when people talk 'morals' because I have done nothing morally wrong. I have led a very healthy life. We need to be leaders to crush this type of thinking, in my mind, because who wants to donate money to research, if the affected people did it to themselves through lack of morals. Please don't be offended by what I say. I think it has to start with all of us.

TheDrj820

Curlyn said:

Hi, I am just pointing out

Hi, I am just pointing out that though we have all done a lot of research, the research and treatment is nowhere near definitive on this ugly virus. Neither is the medical community in total agreement. There are still unanswered questions and it requires an open mind to find those answers, and ask the appropriate questions. No story can be dismissed without full investigation. Viruses are capable of mutation, does this one mutate? I dont know. Because of the multitude of people affected, and the changing face of H&N cancer, I think the answers will come sooner than later.What if it was discovered that a nurse got it from a patient following a bad needle stick- think of the political fallout if thousands applied for disbility work benefit..Back in the 80s there was talk of viruses causing all cancer. So many questions. I hope to do some fund raising when I am stronger.

I understand. I wasn't

I understand. I wasn't declaring my opinion as law. I was just saying the theory formed based off my experience and research. I do think as we get older our immune systems weaken so it is possible the "older" crowd can't fight off a secondary infection. But I still think it has a lot to do with where the first exposure takes place. I think this because many of my friends have more sexual partners than me, and many had had oral sex. But I know I chose oral first and I am the one in this position. I could be wrong. Im not declaring it law, this is just what I have come to believe. 

Curlyn

TheDrj820 said:

I understand. I wasn't

I understand. I wasn't declaring my opinion as law. I was just saying the theory formed based off my experience and research. I do think as we get older our immune systems weaken so it is possible the "older" crowd can't fight off a secondary infection. But I still think it has a lot to do with where the first exposure takes place. I think this because many of my friends have more sexual partners than me, and many had had oral sex. But I know I chose oral first and I am the one in this position. I could be wrong. Im not declaring it law, this is just what I have come to believe. 

I know. And I mean no

I know. And I mean no disrespect. I just want to point out that research is evolving. We should all be expecting better, and perhaps we are not getting it because of the preconceived notion that we brought it on ourselves? (And I love a good discussion, haha)

Curlyn

Dennis, I am sorry that I

Dennis, I am sorry that I hijacked your thread. A thousand apologies. I am at 11-12 weeks post treatment, 6 months post surgery. I had radiation one side only along c chemo. Some days I have more saliva then others but it's generally not bad. The oncology dentist told me that in a year I would have all the saliva that I am ever going to have. But reading what the folks on here have to say, with the newer thinking and treatments, it appears that things evole even past a full year. Good luck. Research is also evolving, anything could happen. PS.I seem to be full of piss'n'vinegar this morning.

AnotherSurvivor

Distribution of HPV cancers

Distribution of HPV cancers by gender/age.

www.cdc.gov/cancer/hpv/statistics/age.htm