#36089 09-11-2004 12:33 PM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 156 | Snort, nose wrinkle, and tongue out to you!!  | | |
#36090 09-12-2004 06:35 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hello everyone, Sabrina that might have been my post about acupuncture you read. My husband tried it for a couple of months, at $110.00 per visit, no insurance coverage,it was quite expensive . We went to a Professor of Radiology at Emory University in Atlanta. He also used the candy as a function indicator. We were so desperate to find 'something ' that we kinda talked ourselves into believing it was working. The good news is , he is a year out of treatment and is finding his mouth is getting moister, is that a word? Anyway, he is more comfortable now but I really dont think the acupuncture had anything to do with it . Hopefully you will have more success with it.
Take care Marica
Caregiver to husband Pete. SCC base of tongue stage IV, DX 4/03 rad/chemo no surgery.
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#36091 09-12-2004 11:45 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | I tried accupuncture for about 6 weeks, it costs $70 a treatment, insurance would not cover it. I think I wanted it to help so much that initially it did, maybe a little. But after a few weeks, I really didn't see the need to keep going. However, I think it is awesome that Doctors are trying to come up with ways to help our dry mouths...SMILE!!God Bless!!!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#36092 09-12-2004 04:33 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Talking about radical ways to save the salivary glands - I heard of a plan to surgically move them out of the way of radiation then putting them back when rad is completed.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#36093 09-13-2004 12:32 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | A variety of things effect PERCEPTION of benefit. If you are less than 2 years out from radiation, there is very small monthly, incremental, increases in salivary output from the remaining (usually submandibular) gland that gets very little radiation in most cases. This continues for approximate 18-20 months after treatment, so a sense of improvement in the 14th month for instance may not have anything to do with acupuncture, if it was being tried at the same time. There is an adaptive biological process that is also part psychological. I have learned to keep my mouth shut more over the last couple of years, and surprisingly enough that helps reduce my need for constant sips of water. I now do this subconsciously, and I also drink less water. I guess if someone asked me I would say my need for water is reduced now. If I had been having acupuncture at the same time, which do you think I would assume caused it? A treatment, or an adaptive behavior that I wasn't completely conscious of? When I feel congested and start mouth breathing subconsciously, I am more dependent on the bottle; nose spray (decongestant) again helps me keep my mouth closed. Adaptive behavior on a conscious level.
I bet anyone here that if they put a small piece of candy in their mouth for a while, that it will cause whatever salivary function that they have left, no matter how small, to increase. I just find it amazing that instead of looking at the obvious answer to something, (which is usually the simplest) people will invariably attach the result to something less likely. Human nature
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. | | |
#36094 09-13-2004 02:17 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | I agree that there are a number of incremental, simple things you can do to help cope with dry mouth problems. (Amifostine and IMRT were not an option for me way back when...) I've gotten into a routine that includes Salagen (regularly for the past 13 years), Biotene products, sugarless gum and making sure a water supply isn't too far away. If any one of them is missing, I notice a little bit of a change; if all of them are missing, I'm in trouble.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#36095 09-13-2004 02:51 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Dry mouth is the most frustrating side effect I suffer from the treatment especially I need to talk a lot as a teacher. I don't quite believe that acupuncture can help improve the situation even though some acupuncturists claim that it is very useful. I don't give it a try because it is very troublesome and time consuming. They often say that you need to have the therapy continuously for several months before you see the slight effect. I don't have the patience,the time and above all, the faith. Like Cathy, I have found stuff that helps me ease my dry feeling. If you open my handbag, you can see a small bottle of water,different packs of sugar free candies and a pack of sugar free chewing gum. If I forget to bring all these items ( which I have not so far), I will be in serious trouble.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#36096 09-13-2004 08:03 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: May 2004 Posts: 137 | It is funny, I guess, for the lack of a better word. But every since the neck dissection, I have so much saliva that I need a bib. Before that I had none. So this is strange for me. I wish it was dry so I could talk, we are never happy are we?? But since I cannot swallow all the saliva just sits in my mouth. So I have to suction it out to talk...Bummer....Just wanted to tell you about my new experience with the salvary glands....miss vicki | | |
#36097 09-21-2004 04:44 PM | Joined: Apr 2002 Posts: 73 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2002 Posts: 73 | As I reread this topic I found my post from last year when I was just starting acupunture. I had the treatment at the pain clinic at Mayo in Rochester MN. My doctor is a MD in the pain clinic who became interested in acupuncture some years ago and trained extensively. He was doing some research on the effectiveness on salivary glands but I was not part of the study. He did not use the candy or do any measurements of my saliva production. However, both he and my surgeon said that the "statistical" result was of little meaning as opposed to how I felt. I really really wanted this to work but I don't think there was any noticable improvement as a result. I figured it was worth a try
ilene
ilene SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
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