Stage 3-4 Squamous cell BOT. Had spread to nearby lymph node. 1st ENT recommended surgery followed by radiation (and chemo?) Radiation Doc and Chemo doc said no need for surgery and 2nd ENT agreed. Highly recommended Chemo Doc suggested intensive in-patient Chemo followed by radiation with one 45 min.out-patient chemo per week. I week of 24/7 cisplatin followed by two weeks of recovery repeated two times. The last time, one month recovery before radiation began. 7 weeks of radiation five days a week.

I'm now five weeks out of radiation and feeding with a PEG tube. I can drink water easily but anything else by mouth reacts with my sore throat. I was first put on Oxycodone, then Oxycontin, then Fentanyl and then Morphine added. Nothing had any affect on the sore throat so I discontinued them. Pain has been a constant with or w./o and doesn't seem to be diminishing. Not too painful, just annoying and keeping me from getting off the feeding tube which requires 4 half hour feedings at least three hours apart.

Dry mouth is really annoying. My Docs said that water (tho extremely necessary to keep hydrated) does nothing for dry mouth but does help keep phlegm moister. A humidifier has been a big help for me at night here in Nevada.

I lucked out in connecting with an inactive OCF member and OC survivor who told me that she had acupuncture for dry mouth and it was very successful. Researching that on-line I see that the efficacy has been confirmed by many studies. Mayo, Sloan-Kettering and MDAnderson have all been involved in studies. I'm currently working with a local acupuncturist but am trying to locate an acupuncture protocol that is more current than 2000, the one my new found friend used.

Has anyone undergone acupuncture treatment for dry mouth? If so, what protocol did your acupuncturist use?

Thanks

Not sure about acupunture and it sounds like your dry mouth is much worse than mine was, but I was using biotene dry mouth- mouthwash and it seemed to act as a band aid. It could be worth a shot. My tumor had actually ulcerated thru the top of my tongue quite a bit so even your average tooth paste would cause a pretty bad burning sensation, but the biotene seemed to be pretty gentle.

Lefty, welcome to OCF! Since you are only 5 weeks post radiation, there will be a whole lot of healing in your future. The dry mouth will get better in time. Many members have used pilocarpine to help with the dry mouth. I didnt like it as it made me sweat and I took it in the summer (girls dont sweat LOL!). It takes a month for every week of radiation to recover. Some people can take up to 2 years to fully recover. Things really will get better with time. Adding some high protein whey powder to boost your protein intake will help you recover faster.

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Best wishes!

Check NIH. They have a current study for Sjogrens patients but invited me to participate as a bone marrow transplantee since the symptoms are similar. I had a single acupuncture treatment there last year and it helped both taste buds and dry mouth! They also taught me acupressure that I can do myself. At the time, I was still receiving chemo so they decided they didn't want to do more until I'd been out of chemo treatments for at least 6 months. By then, I had improved to the extent that I didn't need more treatments.

Certainly not a scientific study but in the 6 + years on this site those reporting the use of acupunture for dry mouth seem to be 50/50 in results and it's either it works or it doesn't and when it works it seems to be short term. I did not try anything other than say Biotene products. Their gum did nothing for me at first but now I chew it all waking hours. I estimate that I am back to appx 90% pre Tx in both saliva and taste but it's impossible to pin that % down since we all quickly forget what 100% was like.

Man you had a lot of Cisplatin, probably the most of any poster on this site. How's your hearing. I lost my high frequency in both ears due to Cis.

Our recovery can take every bit of 2 years and it really helps to consume tons of calories each and every day (I personally recommend 3000) and tons of water. I didn't gain one pound until sometime in my 2nd year of recovery even consuming thjat many calories each day.

The worst is over and now it's just adjusting to the new you. Hope you get off that PEG soon.