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#197804 01-16-2019 08:58 PM
Joined: Jan 2019
Posts: 1
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Joined: Jan 2019
Posts: 1
This is my first post. My name is Cindy. I was diagnosed in June 2018 with Polymorphous Adenocarcinoma of the Retromolar Trigone Area (Low-Grade), however, there was a small amount of disease found in one lymph node, so it was staged at 3. I went along with a recommendation for radiation, but was uncertain whether it was the right course.

I am now two months out of active radiation treatment and am still struggling with a sore/mucocitis that is quite painful. There is some concern that it's an ulcer that could be more disease but as it does look a little better and the area was biopsied post surgery before radiation, I am hoping that it isn't that. My first post treatment scan is the end of February.

Any suggestions about how to heal mucocitis would be greatly appreciated. I'm very open to alternative/holistic remedies. Struggling.

Thanks in advance.

CDN #197805 01-17-2019 05:43 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Cindy!

Our site is made up of oral cancer (OC) patients/survivors and caregivers who are dedicated to helping each other sharing what we've picked up along the way in our own struggles. Most of here have had SCC (squamous cell carcinoma) which is the most common type of cancer for the head and neck areas. Your type of cancer PLGA (Polymorphous low-grade adenocarcinoma) is much rarer and fortunately for you its also a much slower moving kind of cancer. With your type of cancer being different than what most of us here have had there could be some differences in other things such as your treatment plan, how many grays (units of rads), recovery, etc. Your post didnt mention having chemo as most SCC patients end up having. I mentioned chemo as most patients getting chemo with their rads have all kinds of side effects including very painful mouth sores that can take a long time to heal.

Recovery for anyone who has had OC can be a long frustrating time for most patients. Our bodies can never heal as quickly as we think they should. For SCC OC patients who have had rads, it takes a full 2 years to completely heal after rads. I assume PLGA patients having rads would be the same as SCC patients in length of time for a complete recovery. The recovery phase is full of ups and downs and unfortunately some setbacks too. Intake is VERY important regardless of what kind of cancer someone has. Every single day OC patients going thru treatments or recovery need to take in at least 2500 calories and 48-64 oz of water. I know this sounds like way too many daily calories, its not! For patients fighting cancer and who are in the recovery phase will continue to burn up calories at significantly higher rate. Your body is trying to rebuild itself and in doing so it burns more calories. If you are losing weight thats a sure sign you need to up your daily calories. Along with pounds, anyone losing weight is also losing muscle too which is very difficult to regain. Many of us at only 2 months post rads find its easier to drink most of our daily calories. Any grocery or drug store will carry a wide variety of liquid nutrition drinks.

This is NOT easy to do especially if you have mouth sores. If you havent already gotten this ask your doc for a prescription for magic mouthwash (MM). This will temporarily numb your mouth for about 20-40 minutes giving you enough time to attempt to eat something. The MM I was prescribed consisted of maalox, benedryl and lidocaine. There are many other variations some include nystatin. The MM should be swished around in your mouth for about a minute then spit it out, do NOT swallow it! Every single day 4+ times a day you should be rinsing your mouth with 1 cup warm water, 1 tsp salt and 1 tsp baking soda. This may sting from the salt. If you find it causes you too much pain its ok to cut the salt down to half a tsp or less. Just try your very best to keep as much salt in the mixture as you can tolerate. Salt water helps to heal mouth sores. To use the baking soda/salt mixture, swish it around in your mouth holding it there for about a minute at a time, try gargling with it too. Repeat rinsing/gargling several times until you have gone thru the entire cup of baking soda/salt. This should be used a few minutes prior to using the MM. My last suggestion is to pick up some Manuka honey at the grocery store. This should be near the jelly, regular honey section but it might be in the organic or health food area of any grocery store. You can also find this at health food stores. Im sorry but I cant quite remember what strength has worked for other OC patients but Im thinking anything 12 or higher. (this can be expensive and the higher the number the higher the cost) Our members have reported significant improvements with using the Manuka honey. Some even tried putting Manuka honey on a cut and it was healed very quickly. Take a spoonful of Manuka honey and swish it around in your mouth at least 1 minute making sure to cover every single area especially the mouth sores, then swallow the honey. Doing this 2 times a day should be enough to help heal the mouth sores.

You mentioned you are interested in alternative/holistic remedies. Im sorry but that sort of thing should not be brought to the OCF forum. Only scientifically tested, tried and true remedies are on our forum. Every week, theres hundreds of thousands of people reading this and every post on our online public forum. We can not allow, promote, or discuss things that are not scientifically proven. Theres plenty of websites out there where they happily share their "miracle cures" with unsuspecting cancer patients who are looking for help. Its a multi billion dollar industry selling things that are deemed to be the latest/greatest remedy that cures everything . Anyone wishing to discuss unproven treatments, cures, remedies, etc should do so off the OCF forum. This is spelled out in our forum rules all members agree to when joining our site. Everyone at OCF cares about fellow OC patients/survivors and their caregivers! We do not want to see anyone hurt, seriously injured, or worse die from one of the fake cures that was not thoroughly tested and researched and found to be safe.

I hope the 3 ideas I mentioned will help you in getting relief and healing your mouth sores. Mouth pain is the worst and I remember all too well just how bad mouth sores can hurt. Best wishes with everything!!!


Christine
SCC 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 smile

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