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My Tongue Cancer Survivor Story _ Thick Saliva / Dry Mouth Symptom

Gran831
Posts: 2
Joined: Nov 2012

I am a Stage four Tongue Cancer Survivor. It has been over 7 years since Radiation treatment.(December, 2005 - January, 2006)
I have thick Saliva (mostly in the daytime) and very dry mouth at night.
Does anyone else have the thick saliva? It is a horrid side effect, one I can barely live with. Every time I drink anything, I have to go and swab my mouth! If It's something thick, like a shake, the thickness of the saliva is worse. But the worst part is that it effects my speech. And it seems to be getting worse, rather than better!

I have read a lot of posts, and only answered to one. I'm not sure you folks want me on your board, because I highly recommend natural cures above standard treatment in many cases. Of course this has to be the patient's decision. Prior to cancer I was already doing research as a hobby, but the past 7years I have focused more on health, natural cures, and cancer treatments.

My story:
As stated my cancer was stage IV when discovered, on the third biopsy.
My family decided to take me to M. D. Anderson Cancer Center in Houston, TX. If you have to have cancer, and especially, if the cancer is stage IV and you must have surgery that is a great place to be. And I'm sure there are many others across the country.

Three- fourths of my tongue was removed. Reconstructive surgery was done, using muscle, nerve, and tissue from my thigh. Nine days later it lost oxygen and turned purple. Therefore, an emergency surgery was done. The tongue was reconstructed again, using the needed muscle, nerve, and tissue from under the breast and underarm.

The very next evening it was discovered that an artery was not working, so a third surgery was done. Three surgeries in ten days. (I thought I was a goner that time!) But I made it even to the surprise of some of my doctors!
That second reconstructed tongue was beautiful! I could stick it up, wiggle it, and see it in the mirror. I was excited!

I was released from the hospital the day after Thanksgiving, 2006. Radiation was scheduled to begin December 28th. I had researched enough that I did not want to do Radiation! But, my family, with my best interest at heart, wanted me to. They were sure I would die without it. So, I gave in.

After a brief trip home, we returned to Houston. On the very first day of radiation, I came out and felt like my mouth was very full of something. I went to the bathroom, and it looked exactly like melted Mozzarella cheese! I took paper towels and grabbed it and pulled and pulled. It was awful and scary. But that never happened again during my treatments.

Since Radiation, the beautiful tongue is no more. I have not even seen it! It was shrunk so much! It has no movement, no ability whatsoever, to help me swallow.

Please don't get me wrong. I am very thankful that I survived and have as good a life as I do. I am thankful to my entire team of doctors, without whom I would not be here.

I was given the opportunity to spend time with my grandsons and see them grow up into adolescence. I'm so proud of them.

But the facts remain. Radiation and chemo leave people with a low quality of life.

Radiation side effects can occur month after or even years after radiation has ended. I have lost almost all hearing in the right ear, and the left ear is going , too. I I'm told this is nerve damage and nothing can be done about it. I have lost 4 teeth.

So, if I had it to do over, I would not take any radiation treatments. I would eat healthy. I would research what is best. I would make sure I took an oxygen supplement, as well as keep track of my pH. Cancer cannot live in an oxygenated environment, nor in an alkaline environment! Furthermore, If you have radiation, they cannot guarantee you that your cancer won't come back. They have no idea.
There ARE actual cures for cancer! Your doctor won’t tell you because them because he or she doesn't know! Doctors are not taught natural healing!
There are many things out there to help in your fight. All that is needed from us that we do our homework. Research Every topic!
I highly recommend this site:
http://www.gethealthyagain.com/
Mr Harrison in an expert in the field and has some wonderful products.
One I have known to work wonders is Liquid Zeolite. It has been known to completely dissolve malignant tumors within 2 - 4 weeks of use! I think that might be the only product you might need!
Then do the above mentioned things, plus exercise, to keep yourself in shape.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Welcome to the forum....

While I can feel for you as far as your ordeal, I think you are on the minority side as for what you went through and the after effects.

While I didn't have the exact Dx as you, I was STGIII Tonsils and Lymphnode.

I did have sixteen weeks of chemo, seven of which were concurrent with the 35 daily rads sessions, and daily Amifostine injections for minimalizing the thick ropey saliva.

While I went through some of the that treatment, I did get thich pasty saliva like glue, then none.

Eventually for myself and many, actually the majority here, most of the taste and saliva have returned...for me I'd say 100% taste and 95% saliva.

With basically minimal long term side effects..though I'm only nearly four years post Tx, not quite as long as you....

No teeth issues, not on any meds other than acid reflux.

I am 100% for tradional medical treatment plans as a first offense, alternative as last resort.

So I cannot agree with your conspiracy theory thought process, not the illusion that some forms "that be all that is needed for treatment"

Actually I feel that is a dangerous statement.

But I do agree on a healthy lifestyle, and eating right along with exercise....

Best,
John

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

But I have to agree with John. While your statement about quality of life may be somewhat true, there's no doubt in my mind that without radiation, I would not be alive right now. Radiation can cause a lot of problems in the future. I'm just a little longer out of treatment than you are. I'm going on 9 years and it definitely has not been a bed of roses since.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

Would you please post a peer-reviewed article on liquid zeolite? Generally this board entertains all kinds of reasonable approaches to things, but does ask that some evidence based support be given when claims are made that encourage posters not to engage in traditional treatments. Thanks.

Pat

katenorwood
Posts: 1862
Joined: May 2012

Gran831,
Hello and welcome to the site ! I have alot of trepedition in Drs. of natural medicines and claim to fame with cures for cancer. I can track back to 1956 what different cancer dx's have done to my own personal family. And my opinion is if a cure was out there that worked we wouldn't have lost soooo many loved ones. I think that you are a brave soul for what you've endured....with alot of anger that you're hanging on to. Please hear this from my heart as I mean NO disrespect to anyone. This is a very personal decission on how to handle any dx we are handed. Know your body....know and understand your dx....know and understand what treatments are and what the ramifications are. I am new to this, less than a year. But saying this I have a rare dx that I WILL live with forever. LIVE is the key word. Please continue to post, and know that you are WELCOME here. I wish for all my CSA family including you....acceptance of today. Regards, Katie

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

The more I read into your post above;

"I have read a lot of posts, and only answered to one. I'm not sure you folks want me on your board, because I highly recommend natural cures above standard treatment in many cases. Of course this has to be the patient's decision. Prior to cancer I was already doing research as a hobby, but the past 7years I have focused more on health, natural cures, and cancer treatments."

and...

"I highly recommend this site:
http://www.gethealthyagain.com/
Mr Harrison in an expert in the field and has some wonderful products.
One I have known to work wonders is Liquid Zeolite. It has been known to completely dissolve malignant tumors within 2 - 4 weeks of use! I think that might be the only product you might need!"

The more I have the feeling you are here more to steer people in a direction of more non-traditional treatment.

Making comments leaning toward conspiracy theory, such as;

"There ARE actual cures for cancer! Your doctor won’t tell you because them because he or she doesn't know! Doctors are not taught natural healing!"

Makes me really feel pretty strongly that you are more into endorsing the website that you threw out there, which nearly evey page has a potion or remedy.."for a cost", to all that ails us...

Myself, I don't buy into it....

Time will tell if you are here to offer support and share your experience, or to promote non-traditional cures at a cost and profit to someone.

If you are here to offer support, great....

If not, you're right, I don't really care to participate in your postings...

John

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

Gran831,

Dang, you have been through the wringer. I am (sincerely) sorry your cancer has been so rough

So you truly believe high PH and liquid Zeolite are all that’s needed. Good to know. I see there is a lot of information (internet search) on the subjects you mentioned.

Knowing that some cancers are time sensitive and some are not, one might get away with peaking behind Door Zeolite or Door PH, but if you make the wrong choice you don’t get to see the grandsons grow into adolescence.

CM

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

After visiting the website, I think Gran might be vibrating to a different frequency than most of us. Down at the bottom of the page is the disclaimer that the products sold are not meant to be a cure for any disease.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

You all know my views on alternative treatments and meds,
but I've also done the standard treatment as well as my natural
stuff for my immune system which I have MENTIONED many
times I've even emailed some people on here with info which
they have asked for, also spoke to some on the phone but all
that was away from the board. When I explained about it on here
I always did a disclaimer that my wife SOLD it.
I also visited the website that she posted and its the same as many
alternative sites out there selling natural products ( mine is better
than yours, yours is better than mine ) type of things. It is a big
Business just like the Pharma company's and to George they have
put that disclaimer on the bottom of the page as there products have
not been approved by the FDA thus they cannot be called a cure, I'm not
going into detail about there testing procedure ( expensive double blind
random study ) to get an alternative approved.

I do believe that many natural things work , the less man made things
you put in your body ( meds, processed foods ) the better, put in natural things
fruits, veggies and keep your IMMUNE SYSTEM strong and your body will
thank you. ( I just wrote all that and yesterday I had a Big Mac )

Just my opinion on the subject

God bless
Tonsil Dad,

Dan.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I don't doubt the benefits of watching what you eat and eating healthy. I do have difficulty swallowing that a few drops of liquid will melt a malignant tumor in 2 to 4 weeks. Don't you think that's stretching things a bit?

phrannie51's picture
phrannie51
Posts: 3848
Joined: Mar 2012

I'd say that is probably stretching the truth...I went to that site and then went to others to investigate the stuff. Decided I'll stick to my Graviola for natures miracle, don't know if that does any good either, but many people swear by it.

It would be a tough sell to get me to skip traditional treatment in lieu of a few tinctures, but I don't think nothing of taking a few tinctures now that I've done all the other stuff.

p

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

the fact that this poster is talking about some miracle liquid that will melt a malignant tumor in 2 to 4 weeks really really upsets me. I agree with George_B ....that is stretching things a bit.

I am concerned that it will cause some newly diagnosed to spend time looking for this liquid miracle and maybe missing the opportunity to get to the best possible treatment ASAP.

I have therefore flagged the post for the Administrator.
I feel it should be removed in its entirety.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

gotta applaud healthy eating, and preventative health care.

but my opinion, the term 'natural' is so overused and abused as to have virtually no meaning.

for decades, I've heard from chinese friends, coworkers, and relatives that chinese medicine is superior because it's more 'natural' than western medicine. I fully recognize the power of chinese medicine...but the 'natural' argument is frivolous. the truth is, 'natural' herbs contain very powerful drugs that can easily be misused. and in many cases, the mechanics of herbal drugs are still not well understood.
I watched my mother-in-law basically kill herself with self-medication from 'natural' drugs for diabetes. she mixed western and chinese 'natural' medicines, and induced all sorts of complications. it wasn't pretty.

regardless of the source/type of drugs, I vote for taking them only under the supervision of trained and trusted professionals (whether western MDs, qualified doctors of chinese medicine, or other). and no, people trying to sell things via the internet do not qualify.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

natural herbss do not contain "drugs" otherwise they would be
regulated by the FDA, the FDA do regulate them as a supliment but
not in the same way that they do with food & drugs.
They contain active ingredients that can have
a drug-like effect on the body. Many natural medicines are not "standerdized"
so you actually don't know what you are really getting most of the
time. Also many "natural" herbs have bad side effects when taken
with convention meds, NATURAL AND MAN MADE DO NOT MIX.
Graviola that Phrannie takes is good but not without its long term
side effects like symptoms of parkinsons disease ( researched at Sloan-Kettering)
and nausia and vomiting when taken with CoQ10.

Before taking any natural supplement consult your Physician.

Also Nationl Center for Complimentary and Alternative Medicine (NCCAM)
they have a website and you can research mant Studies on natural meds.

God bless
Tonsil dad,

Dan.

phrannie51's picture
phrannie51
Posts: 3848
Joined: Mar 2012

taking any CoQ10....that would freak me out...

I know herbs and other "natural" remedies are powerful, so I'm pretty darn cautious with them. I know it was the herbal meds that kept my dog MoJo going for 4 years after most people would have put him down...I could visibly see him improve.

p

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I thouroughly believe in alternative and heard and saw many
testamonial of what some of these natural products can do. I
always say everyone is different and what works for some may
not for others, I'm glad it worked for Mojo I wish he was still
with you. Keep taking the graviola and dont worry about the
parkinsons ....I think its already set in, you pushed the post
button lots of times in another post...lol
Take care girl.

God bless
Tonsil dad,

Dan.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Phrannie does push lots and lots of post comment buttons!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

ok...so you have your own definitions going on. still not sure I entirely get where you're coming from, but more power to you.
what you call 'active ingredients', I call drugs. "chemical compounds" could also work.
nice to know that smoking the ganja only produces a 'drug-like effect', lol.

in my world...all of these are fundamental natural herbs--in use for thousands of years-- and they all contain powerful drugs. being 'natural' does not change the fact that they contain (or are) drugs.

the chinese herb ma huang (麻黃, ephedra sinica) contains ephedrine and pseudoephedrine.
Cannabis sativa (大麻) contains Tetrahydrocannabinol, Cannabidiol, and a myriad of other chemical compounds.
jimson weed (曼陀罗花) contains scopolamine.
cinnamon (肉桂) contains the compound coumarin.
tea (茶树) contains caffeine, oxalates, and more.
Angelica sinensis (當歸) contains coumarins, phytosterols, and polysaccharides.

I could go on.
all have value, and risks. some are currently regulated by the FDA, some are not.
In Asia, countless millions of people mix 'natural' and 'man-made' meds on a daily basis. fortunately, not all are as reckless (or as ill) as my mother-in-law. In fact, unless you swear off western medicine, chances are that you mix them too.

we agree, consulting a physician about use of natural herbs is a good idea. although difficult sometimes, because we don't always consider commonly consumed herbs (ginseng, ginger, tea, mushrooms, licorice...) for their medicinal purposes.

bevanf
Posts: 1
Joined: Nov 2012

Hey Gran 831,

Although the end of this month will mark the 3 year anniversary of my stage 4 tongue cancer diagnosis, I've just joined CSN this evening. The first search I undertook landed me upon your post. The "Thick Saliva/Dry Mouth Syndrome". Unfortunately, I too suffer from this cycle 24/7, in addition to other major disabilities resulting from: an 80% tongue glossectomy, a radical neck dissection, a partial pharyngectomy, a partial palatectomy and partial masillectomy. My apology for loading you up with medical jargon. Bottom line on 01/06/10, I had most of my tongue removed, both sides of my neck cut open and 74 lymph nodes removed (only one lymph node was slightly positive)and a flap transplanted from my rectus abdominus=right ab From 02/08/10 through 03/30/10 I had 39 treatments of radiotherapy to the head/neck and tongue along with 6 courses of cisplatin chemotherapy.

You are absolutely correct about the devastation that radiation causes. The surgeons and radiologist undoubtedly saved my life, but I am now disabled for life. Fourteen months of swallow therapy have been largely unsuccessful. I can swallow small quantities of liquid and miniscule amounts of food, but no where close to the amount necessary for nutrition. Apparently the feeding tube is my friend for life. My speech is functional, but extremely disabled. I could attend speech therapy 24/7, but there are numerous sounds, entire syllables and words I will never pronounce because the frigging flap cannot come close to touching my surgically comprised palate.

Each of us has endured journeys that have changed our lives and of course it is impossible to compare suffering. I identify with several of your other remarks & perspectives, especially those regarding natural health. Of course this arena, today in the Internet age, even more than historically has been the case, is full of pitfalls and snake oil. I look forward to sharing more ideas and perhaps emotions with you in the future.

jckandmlk2006
Posts: 2
Joined: Jan 2013

i saw all the comments and had to join to comment on the subject.  my father last april was diagnosed with stage 4 liver cancer and we were told he had 3 months to live and docs said that was being generous.  being he was so sick we were unable to get radation or chemo.  doc said to get his funeral in order there was nothing they could do.  one could never describe the pain one feels when they are told that the one you love will be gone in 3 months.  its just indescribable.  after hiding in my room for a week praying the lord would take me instead of taking my father i just got out of my craziness and pain i got on the computer.  i prayed and prayed god would show me the way. just to find something anything to buy him some time. and i did.  i researched and researched 24/7 until the words would just be a big blur.  so one of the first things i saw was essiac tea and i just looked over it briefly and thought tea to cure cancer yea right. so i want on to something else. the day after i went in to my health food store and told the women in there that i knew, the story and asked if there was anything that would help and she said there is this tea that she got that morning and they sent her way to much. it was the essiac tea again.  she told me some of the story behing it so i did buy it.  went home ordered all the books on it and researched it more.  so we tried it along with milkthistle, a great multi vit, vit c, cellfood, co q10 and then green tea extract for some energy.  we also watched everything he put it his mouth.  NO SUGAR and we did juicing 2-3 times a day.  it is a very strick diet and by the way no meat. he was not a happy camper! as the first month went on he just laid and slept. he also was so out of it being his afp number was at 3500 and his calcium and ammonia levels were off the charts.  so the second month came and his yellow color started to disappear.  he wasnt so confused and he was up walking alittle during the day.  very slowly his afp number came down as did the calcuim and ammonia levels. as the summer wore on he got better and better. come sept i made him get a pet scan and it showed atiny needle dot on his liver. sorry i didnt tell you but he did have in april one tumor at 5cm and a second at 3cm. they were almost all gone!!!  i just couldnt believe.  the docs couldnt either they were just shocked.  they said they never saw anything like it. here we are almost to feb the next year and he is still here getting better and better.  he did in dec get off his diet and was sneaking sugar behind our backs and slowing down on the tea and his afp number went up some so it terrified him and now he's back on track again. i dont think he understood the importance of what junk you put in your month.  he might have to live like this for the rest of his life we just dont know.  so my point is there is some natural remedies that do work. and at this point i am happy that we couldnt get chemo and radation the outcome could of been different.   know maybe later if it does come back and its not controlled  by what we are doing we might change our minds and get chemo or radation.  anyone that does have cancer should look into the essaic tea.  read the story behind it. its something.  people have taken it during chemo or radation and didnt get the side effects from it and some like us used only that. the one thing i can say is it worked for us but it might not work for the next person only god knows that but it was an awnser to our prayers for us. right now he looks better than he did in years.  may good bless you and keep you safe.  by the way if anyone wants to know anything at all please reply. hopfully it would go to my email i am new to this.

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