#56585 07-20-2005 04:44 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nellie, I finished my radiation July of 03 and Thanksgiving of 03 I was still having big issues eating. It's slow but the improvement is steady. Eating will never be the exact way it used to be but it does get back to being enjoyable. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#56586 07-23-2005 06:28 AM | Joined: Jul 2005 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2005 Posts: 26 | So you had the ethyol shots and you're still having that problem Nellie? That sucks and doesn't speak well of the Ethyol (isn't that part of it's intended effect)?
My radiation nurse recommended 2 tablespoons of glutamine powder, 2-3 times a day which I believe is for that side effect.
Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
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#56587 07-23-2005 01:54 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | The glutamine is supposed to be good for mucositis -- but it isn't particularly well-absorbed by the body. There's a drug in clinical trial (Aesgen) that is really L-glutamine in a novel delivery material that increases absorption 100x, and this apparently is great for reducing mucositis. Of course, as with the other promising drug, benzydamine, it is not yet through clinical trials in USA. Arghh!
Nevertheless I have seen some papers recommending about 2 g l-glutamine in warm water or saline used as a mouthwash 2-3x a day to help with mouth sores. It isn't stable in water, you have to make up fresh each time.
We are going to try it...
Gail (Barry Cooper's wife)
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#56588 07-24-2005 01:26 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | xynobix, I had ethyol most of the time I was having treatment but there was one week (5 days)I went off it because the second chemo was already giving me so much nausea, I couldn't see adding more and neither could the chemo nurses). The last week and 1/2 I was doing one day on/one day off of ethyol.
But I had most of the mucositic spots and sores that I still have in my mouth already by that time. I mainly did Amifostine to eventually be able to have some saliva. I think it's effect on helping mucositis is not so clear in the research. Right now I can't say I notice much of an effect on saliva either, I came here to whine about that actually, but my rad oncologist has told me it doesn't necessarilly come back right away--that I need to give it longer (so far that seems to be his answer to everything).
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#56589 07-24-2005 01:30 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | do you jusy buy l-glutamin in the vitamin section? Does it help prevent sores or also help heal them?
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#56590 07-24-2005 02:03 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Hi -- The l-glutamine paper I found is a review posted on www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/lgl_0125.shtml It has a number of citations which I have not yet looked up which describe benefits against stomatitis/mucositis. However, the summary info in the review says: "In a recent placebo-controlled study, oral glutamine significantly decreased the severity and duration of painful mucositis (stomatitis) in autologous bone-marrow transplantation patients. It was similarly helpful in alleviating radiation-induced oral mucositis in a recent randomized pilot trial." Later the paper says, "Those with chemotherapy- or radiation-induced stomatitis have taken doses of 2 to 4 grams twice daily or 2 grams four times daily. This was done by dissolving a given amount of l-glutamine in water or normal saline - one gram dissolves in 20.8 ml. of water at 30 degrees Celsius -- and using it a a swish and swallow." I would make sure your nurses know you are doing this but personally cannot see that it can hurt. If you are concerned about ingesting it, I guess just swish and spit. Reading the rest of the paper, it appears that people under metabolic stress and not taking in a normal diet are often deficient in this important amino acid. A google on Aesgen has quite a bit on this new drug, and how l-glutamine acts against mucositis. Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#56591 07-24-2005 03:37 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Thank you Gail. Very helpful information!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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