Hi, I have had two bouts of chemo and radiation which left me with absolutely no saliva but also changed everything in my mouth. The problem is not just dry mouth and the inability to eat most foods but also the changes to my tongue and every part of the interior of my mouth. The condition of my mouth torments me every second of every day. The very nature of the cells seems to be altered. Everything I eat is absolutely awful; my taste is completely destroyed. People are completely unable to understand what it's like and I am utterly unable to describe how it feels. I use the Biotene products extensively and they help but not nearly enough.
I'd like to be in touch with anyone who has anything like this problem. My doctors have nothing to help me with this issue.

Hi Patricia!

You, like many or even all patients subjected to radiation to the head and neck suffer from xerostomia, or dry mouth.

Saliva does so many things for you, helps digestion, swallowing...but also tasting food. Saliva is key to keeping a healthy balance in your mouth of good bacteria too...which maybe the cause of the changes on your tongue etc...it was for me.

It is important to keep that balance so to promote a healthy balance eat yogurt or take acidopholus(sp) supplements for probiotics. Also steer away from things that will dry your mouth like alcohol, caffeine, over the counter antihistamines if possible and keep using biotene products...even the gum. According to the Mayo Clinic's website, studies have shown accupuncture helps.

Anyway I hope that helps.

Eric

Thanks for responding, Eric,
I do those things, of course. Just trying to connect with someone else who has such an extreme problem as I do. I did try acupucture over an extended period but it didn't help. I am afraid there's nothing I can do; certainly the doctors all say there is nothing they can do. Thanks again, Patricia

Hey Patricia - I do not have the problem to the degree that you have but I remember wrting the name of a med down that I had come across duing treatment that a pharmacist recommended for xerostomia - I wrote it down somewhere and will keep looking for it- apparently my organization skills during treatment was not so hot! Anyways, I wrote it down because I knew how much life would change without saliva - if I remember correctly, the med was described as an injection typically given during surgery which somehow served to improve dry mouth - I remember thinking that it seemed a little extreme at the time but thought I just might get to the point that I would be desperate enough to try it! I'm so sorry that you're having so much trouble - I'll keep looking for the name of the med - it may be a long shot - but something to check into at the very least!

Patricia,

There are several of us that have extreme xerostomia, I would say few have it worse then I as half of my face is paralysed making my lip droop on one side not allowing my mouth to close...ever, add that to the damage from the rads and my mouth is a barren waste land.

Jennifer,
Thanks for the info. Please let me know if you find it. My doctors keeps saying there's nothing to do.

I knew I couldn't be the only one with things this bad; not being able to keep your mouth closed definitely adds to the distress and general awfulness. Can you sleep at all? Have you found anything that helps at all? The only thing I've found that helps is swishing my mouth (constantly) with Biotene mouth wash; for me it works better than the Biotene gel. I find trying to chew the Biotene gum very irritating. It is unpleasant to have anything in my mouth, even Biotene gum. I see you've been living like this since January '08. I was diagnosed in Jan '09. Tumor was found to be growing again in Nov '10 so I had second round of treatment. First round was 8 weeks of (long) radiation (25 minutes a day) for 8 weeks and many, many chemos (carboplatin and taxol). Second round was 6 weeks of radiation (only 10 min per day) and cisplantin and itoposide (I don't have that spelled right). Second round resulted in major hearing loss which hearing aids are not particularly good at correcting (they make things louder but don't help with clarity). And major problems with sinuses.
Thanks for answering.

I use the toothpaste and mouthwash in the morning and then the spray throughout the day and a humidifier at night. I keep the gum when I'm running or working out. I have issues with with my teeth, they are breaking and deteriorating pretty badly even though I use flouride trays and take extra care of them. There's really nothing I can do there.

There was a trial drug for dry mouth for patients outside of the 5 year mark that was posted on OCF forums a while ago if I remember correctly but I'm not there yet. The way I look at it I just do what I can do and have to learn to live with the rest.

I do have issues sleeping, I used to use marijuana to help sleep but now I just work or exercise myself to exhaustion and then average about 3-4 hours. I also have hearing loss both due to the cisplatin and long term opiate use. It's frustrating but I've gotten good at reading lips, if I'm looking at you generally I can follow the conversation. Conversation is very difficult, the partial facial and tongue paralization and dry mouth make it difficult for me to be understood and I can no longer project my voice but I do what I can. If I'm not in a loud environment I can hold my own.

Anyway Patricia, there are several of us on these forums that have similar issues, I think you'll find plenty of people that can relate to where you are. We're a tight family here.

Eric

Our dietician suggested zinc supplements to improve/normalise taste.

12 months on, my Alex has all the effects everyone describes above. The dryness is worst in the morning and is quickly replaced by "foam" during the day. He can't stick his tongue out straight - it veers dramatically to one side no matter how hard he tries. He also can't chew very well because of reduced motility of his tongue and often gets things stuck in the roof of his mouth. Things taste "wrong" which puts him off eating and some things are flat out nasty!! He is taking 99% of his nutrition with Ensure Plus and tends to favour the sweetest of the flavours. Of all the foods he has tried, sweet seems to be the least affected by changes in taste and most "tasteable".

His taste improved with the zinc but we are unsure if this was all to do with the zinc or partly the passage of time that helped.

Eric,
I'm in awe that you can work out. I find it intensely unpleasant to even walk one block. I also have severe hearing loss from both the cisplatin and the radiation. My ear tubes are clogged and even though the doctor tried putting in tubes on several occasions, all the mucus defeats them. The hearing aides help but not with clarity so I have lost movies for the most part and also lost music which just doesn't sound like music anymore. I used to go to the LA Philharmonic frequently.
It helps to know I'm not as alone as I feel.
Thanks.

Karen,
Thanks for replying. About food and taste, everything tastes AWFUL and it's hard to keep eating. About a year out from the end of the first round I suddenly realized that I could tell I was eating carrots; they tasted like carrots and I thought some taste would come back but it never did. The second round of treatment wiped out the carrots and made everything taste even worse. Maybe that will modify as time goes by.
Good luck to you and your love with getting through the treatment; it will get better slowly with time, I hope.
Pat

Patricia, you are no longer alone. You have found a great place to compare your progress with other survivors. The sense of taste can take a full 2 years for improvements. I hope you will be able to regain it again.

When you have time please add a signature. It will help us to get to know you easier. Click on the 'my stuff' tab then on profile. At the bottom type your info in the white box.

Patricia,

Exercise is important imho. I've been athletic my whole life and find I'm more myself when I get to run and lift. It's not as awe inspiring as it used to be but it helps me feel normal. I make sure I have water and mouthspray and gum, then I run bleachers, sprints then distance then hit the weights. Makes me feel good and also wears me out so I can sleep. If I keep "watering" myself I do pretty well.

Christine,
Wow, you have been through a lot. Thank-you so much for responding. I have pretty much given up hope of getting any real taste back, just hoping the awfulness will be reduced.
I guess all we can go to keep on truckin.

Thanks, Eric.
Somehow I just can't see how I could actually exercise as it's so intensely unpleasant with my mouth but maybe I can figure out a way to just bear it. Water doesn't help; in fact, water makes my mouth worse and I have to swish my mouth with Biotene after drinking water but maybe I can figure something out. More power to you.
Pat

My Dr prescribed Pilocarpine to assist in stimulating saliva production. Worked for me. I am 2+ years out. Quit using the RX about three months ago. I am happy with where my eating/saliva is at. Definitely not at pretreatment level but pretty good. Do not loose hope! Just keep trudging.

Patricia:
Don't eer give up on anything. I'm almost five years out (YAY) and my taste and saliva production seem to keep improving (Slowly, but improving). My Surgeon said that what physically can't change in my body I can continue to adapt to.
As everyone is saying, keep pressing on! Best Wishes.
Steve

Thanks Carmen and Steve,
It helps to hear that things improve slowly after 5 years. I tried the medication but it didn't help; salivary glands totally fried but am thinking maybe I should try again.
Pat

Patricia, Eric and Jen.
I had to find a psychiatrist. I was so anxiety ridden from this that I was having anxiety attacks that would make dry mouth worse and I could not sleep. He put me on a low doss Mirtazapine. In low dose it makes you sleep I needed that. The oncologist gave me Salagen for the dry mouth. I hear it works for some and not for others. I am hesitant to take it as I was over medicated during my treatments which ended May 26th 2011.

My prayers are will all of you.

Patricia - you've been through an ordeal... wow. But I'll agree with the other posters about salivary recovery. My mouth was like the Mojave for months and months, maybe a year. But gradually around 12-14 months it started to return to some kind of normalcy. Nothing like before, but much better. In fact now, maybe 26 months after my last trip on the ride (as I called RT), it's even better than it was 6 months ago.

I never tried any direct medication for this but if it's out there, why not give it a shot?

Keep us posted. Thinking of you.

Thanks for the words of encouragement. I tried Salagen after the first round of chemo and radiation but it was ineffective except that it increased the 'wrong' kind of stuff my eyes produced adding to my eye distress. Maybe my mouth will improve eventually. It did seem to be not quite as bad a year or so after I ended treatment the first time and I can only hope that will happen again.
It's hard to keep going so thanks for the encouragement.