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.