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#52509 04-24-2002 07:50 AM
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Susan Offline OP
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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


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#52510 04-24-2002 12:15 PM
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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


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#52511 04-24-2002 12:50 PM
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Susan Offline OP
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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.


Susan
#52512 04-24-2002 02:06 PM
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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


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#52513 04-26-2002 07:50 AM
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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


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#52514 04-26-2002 10:54 AM
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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


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#52515 04-26-2002 11:37 AM
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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.

#52516 04-26-2002 12:39 PM
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Susan Offline OP
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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.


Susan
#52517 04-26-2002 01:01 PM
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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.


Susan
#52518 04-26-2002 02:48 PM
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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.

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