My Mom is currently having radiation for tongue cancer. Her biggest obstacle is the mucotitis. She has one more week of radiation, has had 8 weeks total. Has anyone ever used a suction machine to help with this problem? She is up all night gagging & throwing up & is getting no sleep. Thanks in advance for your advice.

Susan

The problem that you are describing isn't mucositis, which is the sores that you get on your tongue and other soft tissues in the mouth and throat. While a different issue, the thick saliva and mucous can keep you coughing all night and day. While this eventually goes away, in the meantime while waiting for it to quit, you can get pretty beat up from all the coughing. I have talked with some who have rented a small aspirator to suction out the stuff, but I don't think they were real happy with the results. What works best is gargling with bicarbonate of soda and salt water. This helps cut the thickness of the stuff and then lets you spit it out. This has to be done every hour or so to actually work. Besides during the day, I got up many times during the night (I was administering pain medication in my tube anyway), and did this as well. It is a tedious process that goes on for weeks and weeks, but I have yet to talk to anyone who hasn

We have tried everything you have suggested with the exception of the suction machine. We were told we needed a prescription for this & her Oncologist would not write one. If it were not for this "crap" she continues to hack up, she would be doing fairly well. She is unable to sleep & has been up for almost 3 days. She has only one more week of radiation & hopefully this will subside when the treatment ends. Thanks for your suggestions. We are having her rinse her mouth out, but no salt as it is very irritating to the inside of her mouth......sores & all.

Hi Susan............Have your Mom try Biotene Mouthwash to rish her mouth with. I used this ALL the time to rid my mouth of the thick ropey saliva that would coat my mouth and throat. Not only did I find it soothing, it was good at cleaning my oral cavity. Biotene can be found at your local drugstore, if you can't find it, ask the pharmacist about ordering some. I purchased mine at Walgreen drug, but I don't know if you have Walgreens in your area. Oh, another thing I used was a water pic. I also found this very soothing in my oral cavity and it was good at getting the crud out. Good luck! Sincerely, Donna

Donna, thanks for your advice on the Biotene mouthwash. At this point, her mouth is so sore & raw inside that even just rinsing with warm water is painful. Her Dr. has said not to use any mouthwash containing alcohol. Do you know, does this mouthwash contain alcohol? If not, it just may be soothing to her as you said.

Susan

Susan.......Biotene mouthwash contains no alcohol and I found it to be the one product that help rid my oral cavity of all the thick ropey saliva that comes with radiation. Try the water pic too. That helped and was also very soothing. I used cool water when using the water pic, nothing too cold or too warm or it may cause some discomfort. I had a suction machine when I was hospitalized but it really never worked well for me. I'm so sorry your Mother is feeling so poorly right now and so uncomfortable. Things will get better as time passes, it just takes a while. Hang in there! Sincerely, Donna

YES, I definitely used a suction machine thanks to a kind nurse who got me started on one at the hospital, and then a hospital social worker who set up a home delivery of one. It was a BIG blessing and I'd urge you to get one ASAP. Call the cancer floor on the hospital where the treatments are being given and ask the nurses for help getting one. Insurance covered the charges. That same social worker helped me get home delivery of the feeding tube food and got insurance to pay for it. (Much better than the cancer dietican who told me incorrectly that insurance wouldn't pay.) I know exactly what your mom is going through, I did the very same thing myself. I'd sleep on a cot in the living room so as to not wake up my husband with my constant gagging, spitting, and coughing. Once I got the suction machine I could at least get most of it out without gagging so much that I would throw up. Before the suction, throwing up was a regular occurence. RUN OUT and get one ASAP. I wish I'd had it sooner.

Because of this wonderful board, I hear about the suction machine. When I called to order one, they told me that I needed a prescription from my Mothers doctor. We asked her Oncologist and he said "NO". I wasn't present at this appt, but my brother said he was adamant about it stating it would "do more harm than good" and that after radiation was completed (4 more treatments left) this would start to subside. If it werent for this mucous that she has to constantly "hack" up, she would be doing SO much better. I am trying everything I can to help relieve her of this awful symptom. At this point, she can't even swallow, so hacking it up is very tiring & makes her sick. I am going to try the mouthwash Donna suggested.

Mid West Gal / Brian ..... do either of you have an opinion as to why a Physician would refuse a prescription for this suction machine? It sounds like it was a lifesaver for you Mid West Gal.

I think it sounds cruel for the doctor to not write a prescription for the suction device. I can't picture how you could possibly hurt yourself with it if that's what he's worried about. Every doctor I encountered here in Des Moines was willing to help me in anything I asked for, so I'm baffled as to why he'd refuse. In my case, I didn't ask the doctor myself. The social worker from the hospital cancer floor arranged it all. Ask again, because it's definitely worth it. Maybe the doctor thinks it won't help, but why should he care if you want to try? That thick salivia stuff was a MAJOR hassle for me.

When dealing with medical or dental professionals it is their obligation to answer your questions about all things completely. If you do not understand, it is the patient

Brian & Midwest gal......I took both of your's advice and purchased the Biotene mouthwash. My Mom just started using it, and it definately has made a difference in keeping her mouth clean. She is still "hacking" alot of thick saliva up, but that will just take time I'm told. And, Brian...I spoke with her Dr. about the suction machine & he said exactly what you said might be the reason why. Her mouth is too sore & tendor & the machine, which for now, would not be good for her. Her mucous comes from down in her throat where you can't put the suction wand.

Thanks for your advice. She has only 3 more radiation treatments to go & she is done. Her prognosis is good. Her tongue responded remarkably well to the treatment. I know it will take months for her to recover to where she feels more like herself. She is very sick right now. Has some good days, but not too many. It's a sad thing to watch, but we are encouraged & I will be there for her as long as it takes.

Susan

My husband just had radical chemo and radiation treatments for tonsil cancer. He went through terrible mucous. It is almost 2 months since this part of his treatment ended. About 2 weeks ago he had surgery and intra operative radiation. He still has mucous, but it is much less than when he was having chemo and radiation. We did not get a suction machine until after the surgery. My husband used it for a little while and stopped when our visiting nurse told him suction machines can sometimes make the mucus worse and your mouth more dry.

Hi Susan.....hope you are feeling better and the mucus is under control. My mom had a suction machine (2 actually, one was portable for in the car). She got it after her surgeries, and I must say....relied on it big time. She also had a trach, so we were able to help suction in her throat through the trach if she had trouble coughing it up. I guess each person is different, but I found the machine to be a major blessing! Good luck.
Brooke

Hello Brian and Donna, Thank you for the information on the thick saliva problem. My 6 weeks of radiation treatments ended 4 weeks ago and I am still having problems with thick saliva. I am going to try the Biotene mouthwash. I have a few other questions if you don't mind. I am having trouble swallowing liquids & solids. It feels like I have a big lump in my throat. My surgeon & oncologist stated that it is scar tissue in my throat that was cause by the radiation treatments and will take lots of time to heal. Any idea what "lots of time" is? I figured I would be up and running in 2 weeks (naive?). Any information on the recovery time would be very helpful (mentally).
Thanks, Victor

Hi, I am going to go & pick up some of the Biotene mouthwash on my way home for my mom. She has had so many problems with the thick saliva & sore mouth. Thanks for the suggestion!! To Malibu55. We were told the effects of radiation could take up to a year to get better. It must depend on the patients tolerance. My mom went through 6 weeks of radiation. She just finished 2 weeks ago & she is still very ill & miserable. It takes time & patience. As for mentally, she had to go to a psychiatrist. She cannot handle the depression anymore. It has been 5 months since her radical neck dissection. She has been through hell & back. I hope you have a good family & friend support system. That always helps. I wish you the best of luck in your recovery.

Victor............Some how I missed your post so I am sorry about the delay in getting back to you with your questions. I'm glad your going to try the Biotene Mouthwash. I found both the tooth paste and mouthwash to be very helpful in combating the thick/ropey saliva. I also used a water pic and that was very soothing on my achey mouth. Many have used a suction machine and while the machine never really helped me, others swear by it. I guess whatever you can get to work for you is the best answer. You'll have to have a written prescription for the suction machine though.

If you're still having trouble swallowing and don't feel comfortable with the scar tissue theory it might be helpful for you to ask for a barriam swallow. I was having the same sort of problems with swallowing (still do sometimes) and didn't feel comfortable with the scar tissue theory, so I requested the barrium swallow. It is a simple procedure; just a matter of drinking a little barrium while having an xray done on the throat at the same time. My swallowing issue turned out to be exactly what the Doctor said it would be--scar tissue. Still, I was glad to know without a doubt it was nothing else.

As for healing and really starting to feel good, everyone is different. I think Brian says about one month of healing for every week of radiation and that sounds about right. For me, at the six month mark I was feeling much better, although still not my old self. It took over a year before I really began feeling good and not so fatigued. However, fatigue still seems to be an issue for me and I do not have the same energy level I once had. As I've said before though, that could just be old age creeping up on me.

The worst for you is over and now you will begin to heal. Be patient, because it does take time. Good luck and keep us posted on your progress. Sincerely, Donna

Thanks for the info on the accumulation of mucus. I went to this site especially for an answer to this. I am in my fourth (out of five) week of radiation, I am also having chemo once a week for four weeks. I have been using the Biotine mouthwash - but apparently not on a regular enough basis - I am going to try it regulary. Thanks to all who added some information to this problem.