My husband finished his radiation on 12/5/06. He is doing fairly well, eating a fairly good variety of foods and decent amounts. He has had some mild spices - salt and pepper. He has even had a couple spoonfuls of gumbo.

He is, however, having problems sleeping. He uses Biotene toothpaste and mouth wash, Salivart spray and takes Salagen. He is waking up, he says hourly, every night with a dry mouth and having to go to the bathroom. He also has mild sore throat. He is then very tired by late afternoon and early evening, but does not want to take naps because he thinks he will sleep even less well at night. He was taking some sleeping pills, but hasn

Barbara,

It should get better over time. Since he's just over a month past the end of radiation, it's still recent enough to cause problems like that for many people (and I assume he's drinking lots of water, which may be triggering the nighttime bathroom visits).

A couple of things have helped me combat dry mouth during the night. One is keeping my head somewhat elevated (I use two fairly substantial pillows). Also, I try to sleep mostly on my side -- if I sleep on my back, my mouth still tends to go dry rather quickly.

Cathy

Hi Barbara,

I had the same problem for about four months. There are several products on the market that may help. Your pharmacy should have a few gels for xerostomia that helped me. Name brands do not come to mind, but your pharmacist can help. There are a few prescription product tha tmay work as well. Salagen did nothing for me. I will check my med cabinet to see if I cna get some names for you and try to post this evening.

Steve

Hi Barbara --

Here are some things my husband did, and others have also tried them:

1) Get a room-sized humidifier (warm-mist is best) and set on "high" about 1 hour before bed-time to keep room humid. We have always had a whole-house humidifier running in winter but the room model seems to put more moisture in the air where it's needed.

2) Try Breathe-Right strips, as your husband's nasal passages may be congested -- the radiation can affect this -- and thus mouth-breathing, which will give anyone dry mouth! My husband used these strips for several months after treatment. If your husband is snoring a lot, and didn't before treatment, he is almost certainly mouth breathing. I couldn't even sleep in same room with Barry for a couple of months due to this, but the strips helped him and as his mouth and throat recovered he stopped snoring (well, mostly!)

3) As others have suggested, elevate head slightly (2-3 pillows).

4) Make sure he does not have a urinary infection, his immune system is suppressed and these secondary infections are thus much easier to catch -- Barry also was getting up a lot, and not due to water intake, they checked and no obvious urinary infection (but not all urinary bacteria will culture out) and finally, was suggested he might have mild prostatitis by his urologist. After several months and as his immune system kicked in, this went away. He did take soy/cranberry capsules (GNC) to help with this.

5) The newer and superior drug for dry mouth is Evoxac, our ENT uses it herself (she had XRT head radiation for a neuroblastoma and has pretty significant dry mouth). Fewer side effects than Salagen, and more effective. Barry took 3x a day for about 9-10 onths, is now down to 1 at bedtime or two if it's very dry weather.

6) The new Oral Balance liquid seems to be better to keep mouth moist. Use at bedtime and keep by bed to squirt in night if needed.

7) Finally, although this won't help during the night, suggest your husband try chewing xylitol gum during the day to increase mouth moisture (also helps prevent cavities). The brand Barry uses is widely available at dentist's offices, XyliMax, try the mild fruit flavor.


Hope this helps,
Gail

Hello, Barbara- This is a different direction. After my hubby finished radiaton, all he wanted to do was sleep. Day and night. Maybe Michael needs to do the naps-whenever he feels like it-am, pm, etc. Being tired all the time is the last thing he needs to deal with. His body will recoup better if he has adequate rest and it doesn't have to be just at night. Amy

Hi Barbara,

Ditto on the Evoxac. I used it for several months post treatment and it helped a lot. I also found help having Oragel or Mouth Kote next to the bed to use in the middle of the night. Numoisyn Liquid or Lozenges may also help. THey helped me about a year after treatmetn. I haven't used the Oral Balance Liquid. It was not out two years ago. But having something next to the bed to moisten the mouth at night will help. I know what it is like to wake up with your mouth welded shut.

Steve

Dry mouth, sore throat, getting up frequently to urinate are all familiar to me since finishing treatment. Before diagnosis, I slept all through the night. The dry mouth and need to urinate are a vicious cycle; you wake up to drink water every hour or so which creates the need to pee. It's probably from mouth breathing and the Breathe Right strips solved that problem for me.

As to the sore throat, my ENT sent me for an endoscopy on the chance it could be chronic reflux. Remember, we've lost a lot of the digestive powers of saliva, instead we're drinking water (or other liquids) to get food down. Our digestion is not normal. Anyway, in my case, the endoscopy showed no problem with reflux. The doc prescribed Protonix as needed for the burning and churning.

A humidifier in addition to the Breathe Right strips will help also.

Michael has tried the Breathe Right strips - they didn't help. He is on Nexium for reflux - MD Anderson prescribed that originally when we went there for a second opinion. I will ask his doctor about the Evoxac next week. A humidifier isn't really practical in our house although we talked about it because we live in a log home and mold is big down here in the Deep South

Michael thinks part of his problem with sleeping, along with a dry mouth, might be due to some ear and neck (back) pain. He may, of course, have some arthritis totally unrelated to the cancer, but could it also be from some decreased circulation in those areas following the radiation? When he wakes up at night if he isn

For what it's worth, my ENT says there's no evidence evoxac is more effective than salagen. Where it tends to be superior is less side effects. I actually have none of the bad side effects from salagen, even though I'm taking the maximum dose, and he said there would be no point in switching. If he is wrong and anyone knows of research showing evoxac is more effective (not just less side effects), I'd love to know of it since I think i will need to show it him and my prescprtion drug insurance company, to get the change approved.

Nelie

Nelie,

What are you taking the salagen for? Has it helped your dry mouth? Just curious.

David,

I've been taking salagen (now the generic oral pilocarpine) for about 16 years -- ever since the clinical trial stage. It has helped me a great deal with salivary function.

When I had a recent checkup with my RO, he said he had seen studies that showed the following results with salagen: 1/3 positive benefit, 1/3 placebo effect, 1/3 no benefit. I suppose a lot depends on what's left of your salivary glands after the end of treatment. I know some of my salivary glands were removed during surgery, and the remainder were pretty well toasted during radiation (XRT), but I've still gotten back quite a bit with medication.

Cathy

David, Sorry I thought it was obvious I was taking salagen for drymouth. As far as I know, that's all it's prescribed for. Right after I take a dose I get a little gush of saliva which lasts maybe half an hour. Then I get very very dry again. I get incredibly dry at night. So yes, it works but not very well.

If evoxac works better (and there's more than anecdotal evidence of that that I can show my doc) I sure would like to know it.

Nelie

Nelie,

Do you take Salagen on an empty or full stomach? After some trial and error, I found that I got the "gush" of saliva (and then a rapid decline) if I took it on an empty stomach, whereas the saliva seemed to come and go more gradually if I took the salagen after having some food first.

Cathy

I take it with food. But it's all liquid food. Maybe that's part of the problem but there's not much I can do about that, unfortunately.

For what it's worth, my ENT says there's no evidence evoxac is more effective than salagen. Where it tends to be superior is less side effects. I actually have none of the bad side effects from salagen, even though I'm taking the maximum dose, and he said there would be no point in switching. If he is wrong and anyone knows of research showing evoxac is more effective (not just less side effects), I'd love to know of it since I think i will need to show it him and my prescprtion drug insurance company, to get the change approved.

Nelie

Nelie,

What are you taking the salagen for? Has it helped your dry mouth? Just curious.

David,

I've been taking salagen (now the generic oral pilocarpine) for about 16 years -- ever since the clinical trial stage. It has helped me a great deal with salivary function.

When I had a recent checkup with my RO, he said he had seen studies that showed the following results with salagen: 1/3 positive benefit, 1/3 placebo effect, 1/3 no benefit. I suppose a lot depends on what's left of your salivary glands after the end of treatment. I know some of my salivary glands were removed during surgery, and the remainder were pretty well toasted during radiation (XRT), but I've still gotten back quite a bit with medication.

Cathy

David, Sorry I thought it was obvious I was taking salagen for drymouth. As far as I know, that's all it's prescribed for. Right after I take a dose I get a little gush of saliva which lasts maybe half an hour. Then I get very very dry again. I get incredibly dry at night. So yes, it works but not very well.

If evoxac works better (and there's more than anecdotal evidence of that that I can show my doc) I sure would like to know it.

Nelie

Nelie,

Do you take Salagen on an empty or full stomach? After some trial and error, I found that I got the "gush" of saliva (and then a rapid decline) if I took it on an empty stomach, whereas the saliva seemed to come and go more gradually if I took the salagen after having some food first.

Cathy

I take it with food. But it's all liquid food. Maybe that's part of the problem but there's not much I can do about that, unfortunately.