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Will the Dry mouth be permanent?

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey Ya'll,

My Husband has stage IV HNC right tonsil. We are getting ready to have 35 rad treatments with three cisplatin. He is curious at how many people have permanent salivary gland damange? Will the dry mouth be for the rest of his life or will some of it return. We are getting the PEG tube in before we start treatment. Our dry run is Wednesday. Thanks, Donna

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

I still have issues with dry mouth, no nearily as bad as it was post treatment, but Id say my saliva has returned about 80%. I have to carry a bottle of water with me everywhere I go and I do wake up a night and have to get a drink of water. I keep a bottle next to my bed, pretty much just roll over get a drink and back to sleep I go. I should get one of those water tubes like they have for hamsters and put it next to my bed.. :)

There are toothpastes, mouth rinses and gels he can use and should use to help keep his mouth healthy while going through radiation and for having the dry mouth. Biotene toothpaste and mouthwash will help kill bacteria that saliva normally takes care of. Without saliva, cavities and mouth issues will ruin his mouth, good oral hygiene is a must for the rest of his life. I still use my flouride tray, biotene toothpaste and mouthwash daily.

Make sure he meets with his dentist and doctor for more information.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I too have been lucky to have 80-90% of my saliva and taste return after about 21 months post treatments. I really think that in my case the IMRT treatments in combination with the Cisplatin focused the radiation on the bad cells while salvaging many of the good cells. In addition I was lucky to have a Dentist that had 13 yr. experience with HNC patients at a VA hospital. He wrote me out a strict mouthcare procedure that I followed religously and it really made a difference. To this day when he sees me for routine checkups he is amazed at how much saliva I have and the fact that my teeth are in great shape. Other than temporarily irritated gums and a very few sores, my mouth was not a problem during and after treatments. And even now, again 21 months out, I have no dental problems at all.

You may want to look at a previous post for the detailed procedure I put there. Copy this into your Browser window and scroll down to July 14.

http://csn.cancer.org/node/171697

Good luck, God Bless...............your husband will do fine.

JK

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

JK,

I did read the bit on oral care and it is a big help. I am gonna ask about the Emu oil as this is the first time I have heard about it. We have already visited the dentist and my husband had eight teeth pulled (two were wisdom teeth) He has fully recovered from that. He has been using the Biotene since the oral surgery and really likes it, so that is good. I am so thankful God has put me in touch with you. Thank you for the advise. I know my husband will be fine. Thanks for the prayers.

Donna

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks JK, I printed your previous post to refer to later. My brother's teeth were in good shape, none had to be pulled and his dentist gave him the "good to go" for radiation. Your tips will come in handy as we get further into treatment.

My best to you and thanks again!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Sirena and JK make excellent suggestions.

You may also want to ask the doctors about the viability of Amifostene (sp?). Prior to receiving my 35 treatments, I was offered this option. It was offered tentatively, to be sure, as it seemed back at the end of 2005 there was still some issue regarding its effectiveness.

At that time, and my how things change, so do not take this at face value today, I had two shots delivered prior to each rad treatment, about a half hour before treatment. The shots were expensive (as I recall, about $400 per shot, and that was two per day, remember), but they were covered, since one of my doctors, probably my ENT, provided a referral for them.

The key thing is that it was SUPPOSED that Amifostene MIGHT save salivary glands. My doctors, frankly, were rather iffy about it, as indicated above, and part of this may have been related to my condition and the possibility of nausea and other side effects of the drug, something I really didn't need at the time. On the other hand, there was decided indecision about the merits of the drug.

Still, things change, and I have read some good things in here from people. Me, like the others, I have rather good salivary action. I cannot say for sure that Amifostene had anything to do with it, but at the time, I was looking for all of the help I could get.

Never hurts to ask.

Best wishes to hub and his family.

Take care,

Joe

AppraiserGirl
Posts: 20
Joined: Jul 2009

My brother is also concerned about dry mouth becoming permanent. I'm so glad to read everyone's comments and to hear that after treatments ya'll still have saliva! That's great!

Ya'll don't know how much I appreciate all this good info.

Thanks and my best to each of you!

Donna, my brother has completed 3 of about 40 rad treatments. I'm thinking of you and your hubby. Keep your chin up and keep thinking positive thoughts.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Donna,

My thoughts and prayers are with you, your brother, and your family. He will beat this. Stay tuned for the roller coaster. It's worth it. I'm still here 5 years after my surgery, radiation, and chemo.

I had 30 rad treatments and 3 doses on Cisplatin in early 2004. I did great with the Chemo. The radiation did its thing.....lost taste and most saliva, with a lot of mucous (Sp?). I opted for the Amifostene shots too.....Monday-Wed-Friday. I still have saliva, just less than before. I don't even need to carry a bottle of water. Maybe the shots helped...maybe not. My taste came back quickly. I can eat what I like, just need some swigs of water to help wash it down!

Others have given you great advice about dry mouth. Take care of the teeth! I love Biotene toothpaste and mouthwash. I see my dentist every 4 months. So far, so good.....no cavities or any tooth problems in the 5 years!

I look forward to hearing about your brother's progress. There are many out here who know what he will be going through. There is light and life at the end of the tunnel!

George

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey,

Thank you for your kind words. I will keep your brother in my prayers too. We will all be okay. Is your brother gonna have Chemo too. We are kind of anxious to get started. I think I will check into that shot to help with the saliva. No need to lose it if there are ways to prevent that.

My Best,
Donna

AppraiserGirl
Posts: 20
Joined: Jul 2009

Donna,

I know what you mean about getting started! I thought my brother's treatments would never begin. His rad oncologist recommended he see a med oncologist re chemo, but so far he has chosen not to go the chemo route. I want him to see about chemo, but it's his decision and I have to respect that. I'm hoping he will think about it and check out how much chemo will be involved. He lives in a different town from me about 3 hours away so I'm not very hands on. So we'll see......

Thanks for inquiring. Ya'll take care and good luck!

Mydogsneedme's picture
Mydogsneedme
Posts: 1
Joined: Jul 2009

I went thru treatment 2000 for left tonsil with mets to nodes in neck. They told me I would lose my salivary function. I just said ok, just get me thru this. "Living" the last 10 years has been a hoot, but I never knew how much spit made life sooooo much easier, but it has gotten better (not much, but better). The bottom line for me is to stay a alive and comfortable as possible without much saliva. I do have my taste, but spit does make food mush up the way it's suppose to. I've eaten a lot of ice cream. HERE's the important part. My radiation oncologist told me that they would eventually be able to remove the glands and replace them after radiation. That was 10 years ago, so might be worth searching and asking. The feeding tube is gonna be his live saver. I put 6 cans of ensure down it every single day. They also gave me a pump to wear 24/7 so they put in a porta-cath in my shoulder to use instead of sticking my veins every time. Tell em you want one of those. This ain't for sissies, but I was the biggest 49 year old baby before this happened and I found out just how incredibly strong I am. Now I'm a beat up old 60 year old woman living life like everyday like it was my last. This is my first time on this site, so not sure how it works, but if you want to stay in contact, I've got all kinds of tricks up my sleeve. Stay strong

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Donna,

I guess I can't read very well.......Husband, not brother....Sorry!

George

bonifay
Posts: 3
Joined: Aug 2009

I still have dry mouth. I have been cancer free since 2006 but with no saliva glands. I did go to the dentist before treatment and since but I'm fighting a loosing battle when it comes to the teeth. they are decaying from inside out. not sure as to what we can do next. my dentist is not sure that my gums will be able to support dentures so while he researchs the next step I try to keep plenty of fluids in my mouth and good dental care. this part is freaking me out some because I have always taken very good care of my teeth. I'm having a hard enough time eating as it is don't know what I'll do with out teeth.

diamond-n-the-rough
Posts: 14
Joined: Jul 2009

I have dry mouth & no working saliva glands to this day also. food is my worst enemy. I only want to eat sweets, especially ice cream. my teeths and dropping out day by day ,but there's no pain. My doctor told me that when i was diagnosed, with cancer in 1999 in was already in stage IV AND CANCER HAD already eaten, a hole through the base of my skull. I known some brain was also affected, because i have short memory loss, no working pituitary gland ,no working thyroid or any working horomones.But look up you can fight this thing and beat it !

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