#81510 10-03-2008 08:23 PM | Joined: Aug 2008 Posts: 48 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 48 | My granddaugther pick up a prescription for me today, when I looked at it. it says use as directed, shake well and refrigerate, it's called magic mouth wash, any help? I also got a call from a lady wanting my credit card infro so she could send me the suplies I needed. She said after I receive them that a man would call and tell me how to use them.....I found 4 large syringes out on my porch didn't get no call back. I'm ready to scream, this don't seen right. I got a peg tube on Sept. 11th. nothing has been done since besides the staples taken out two weeks after surgereon got back from vatcation. no cleaning no instructions-. I started chemo and radiation on the 15th. my mouth has sores in it and all I can get is to stop treatment for a week. I can still eat and drink, just hurts some. Is this the way it goes or who should I hollow at?
cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Rubyann,
From Wikipedia, "magic mouthwash" may refer to a number of different formulations to be used as a mouthwash. Depending on the specific formulation, a magic mouthwash may treat infection, inflammation, and/or pain. Typically, magic mouthwashes are prescribed to treat the pain associated with oral ulcers caused by radiation therapy or chemotherapy. Magic mouthwashes are typically compounded in a pharmacy from a number of ingredients specified in the prescription. A recipe should always be specified in a prescription, since there is no definitive recipe for "magic mouthwash". Before preparing a magic mouthwash, one should check for interactions between the ingredients.
Common ingredients include: � Diphenhydramine - an antihistamine to reduce inflammation � Glucocorticoids - to reduce inflammation � Lidocaine - a local anesthetic to relieve pain � Maalox - an antacid formulation which acts as a coating agent � Nystatin- an antifungal for candidiasis � Sucralfate - a coating agent � Tetracycline - an antibiotic � Erythromycin- an antibiotic The magic mouthwash I used during my radiation therapy contained nystatin, tetracycline, and I believe something for inflammation (steriod). It also required refrigeration, tasted terrible (but they added some flavoring to improve taste). Also, make sure to shake well before using.
I was instructed to swish around my mouth for a least a minute, longer was even better. I was told not to swallow it (swish and spit), although others are instructed to swallow it. I think I used it 4 times a day.
The use instuctions on my bottle said to take as directed by my doctor. I would contact your doctor to find out what is in it, and for use instructions.
Mouth sores and ulcers are common and probably an expected part of RT. Mine started about 3 weeks into treatment, and lasted for a long time after I was done. The magic mouthwash should help that. My doctor also told me to rinse my mouth frequently (especially after eating) with baking soda and salt water rinse (I think it was 1/4 teaspoon of each in a glass of water).
I was prescribe pain medication, and also a number of medications for the skin (a cream and an ointment). My skin turned red, blistered, cracked, etc during treatment (again towards the end).
I did not have chemo nor a peg, but I imagine the syringes are for the peg.
Good luck and I hope you get the help and answers that you need.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ruby
When you have a PEG tube, it must be flushed everyday. Let me appologize for my complete lack of medical terms here. First fill a cup with warm water, cold will give you a stomach ache and hot will burn you. Use a syringe to suck up the warm water. Take the long tube part and fold it in half up towards the part top part where you put stuff in. Be careful or it will leak all over. Then open the bigger part of the tube and put the syringe in there. Only now is it safe to let go of the folded part of the tube. Slowly push the plunger of the syringe down until its empty. Fold the tube part in half again, now take out the syringe and refill it and do it again.
I hope you can make sense of these directions, its pretty hard to give them to you over the internet. Its something a nurse should have taught you in person. The peg tube needs to be rinsed at lease once a day. I did mine twice per day. Once you get the hang of it, you can even put medicines thru there instead of struggling to take pills.
Magic mouthwash is exactly what Susan described. I basically used it to rinse my mouth to soothe it before trying to eat. It will help numb your mouth so eating is easier and will help so your mouth doesnt hurt so much.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | The MM I used had 3 different narcotics in the formula. It was my Drs compound. I just swished it around for a couple of minutes then spit it out. I had 2 different instructions. One was the swish and spit and the other was swish and swallow. LOL I had to ask the Dr what in the heck I was supposed to do. Spit it was.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | What I do is insert the empty syringe into the PEG tube, then pour whatever into the syringe's large end, then insert the plunger. Less potential for spillage.
Keep on drinking water as much as possible to keep your throat open and to maintain the ability to swallow -- Easier to keep it than to get it back!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | 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 | I didn't see in your previous posts.... where are you being treated and who is your lead doctor?
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. | | | | Joined: Aug 2008 Posts: 48 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 48 | I an being treated at a small cancer center. I have a chemo doc. and a ratiation doctor there. I have a ENT who did surgery in July. I got the peg Sept 11th. and nothing has been done to it and no one will show me what to do. A lady was trying to tell me on the phone today how to use it and she said part of it was missing A blue thing that she would sent me one. I have a valve non sterile M90000. I'm starting my 4th. week of chemo and radiation. I have mouth sores, but still eat good, just don't teaste that good. First sign of sores they wanted to stop treatment for a week, I said no so they stoped treatments fri and MOn. I stay on the phone trying to find someone or something my insurance will paid. The mouth wash I just been holding in my mouth for a while them spiting it out. I'm so sick of this, everyone is so nice and sweet, get a lot of hugs, and I'm sorry I'll try to find out. thats the end of it. sorry to rant I'm at the end of my rope and not even half way.
Last edited by rubyann; 10-06-2008 04:05 PM.
cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Rubyann, There is a picture of a PEG tube on the site. It looks just like mine and yours should be similar. http://www.nuh.com.sg/healthinfo/gastrointes/PEG/1_what_is_peg.aspAlso consider calling the doctor who put it in.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ruby:
That picture Don sent you is exactly what my tube looks like. You wont see the round part on the right, thats what is inside your stomach.
You need help with that right away, so you can learn to flush it. Next time you go for treatment, ask a nurse. Dont leave til somebody takes a couple minutes and shows you how to flush it out. Its not something that is easily explained over the internet or phone, you need to see it done in person. I know the nurses there are for chemo and radiation, but most will know how to use the tube. Another good source for help is a nutritionist, most facilities have one. Just keep asking til somebody shows you. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2008 Posts: 48 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 48 | my peg is a brown one that was put in thur stomache, has 23 staples and 2 stiches to hold it in place. It has a funny end on it. it has 2 openings, 1 has a plug. the other one has a 5 ways, 1 goses in tube, the others who know, 1 is a turn off or down, 1 on the side has a plug, 1 on top is un moveable plug I think. I have heard no 1 talk about 1 like this, the lady on the phone today. said a piece was missing, she is supose to call the canaer center tomorrow and tell them what to do over the phone. step by step. I have laughed about this and cried even more. I'll make it' thanks 4 all the help. 1 of the doctors at the hospital before I come home thought it was too long and bend it up and twisted it with a rubber band. it's 14 inch with tip. don't know how much is inside.
Last edited by rubyann; 10-06-2008 09:24 PM.
cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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