Welcome to OCF, Genau! Im very sorry to read about your recent diagnosis of oral cancer (OC). Your post took me back to when I was first diagnosed and was worried about missing days off from my job and my teenaged children. I knew absolutely nothing about OC! I was trying to control something that I had no control over. Boy of boy, did I have a ton to learn!

One thing you will pick up from our site is that every patient is different and will respond to things in their own unique way. This goes for medical procedures, medications, recoveries, and anything/everything else relating to someones medical condition. You are correct in estimating patients have a hard time after about the first 2-3 weeks and then recovery which can be a tediously slow phase with ups and downs plus some setbacks thrown in as well. There are the lucky few who sail right thru rads with barely any noticeable problems. Its about 10% of patients who will get thru treatments without any major issues. The lucky 10% arent any special population segment, being active and in shape doesnt change who gets thru things easier than others. Over my years of being on the forum and speaking to so many patients from all over the world, Ive noticed the better patients do with their intake, the easier treatments will be for them. Taking in at the very least 2500 calories and 48-64 oz of water every single day may sound like alot but it really isnt when considering how your body is working OT fighting the cancer and trying to rebuild itself which burns up calories at a much faster pace.

Even if you do great with your intake, unfortunately you still may be one of the patients who struggle almost from the very first day of rads. Unfortunately, this is something nobody can predict. It all goes back to the "everybodys different" slogan. Even if you take several people who are the same age, sex, live in the same general area, have the same type of job, marital status, tumor location, size/stage of the tumor, are in general overall good health, etc... these patients are still individuals who will respond to things in their own unique manner. What works for one may not work for another patient even if on paper they appear to have the exact same characteristics.

From what I know of Hope Lodge, they have locations near all the top comprehensive cancer centers (CCC). Im sorry but I do not know Hope Lodges exact locations but they can easily be found online. When staying there, patients must have a caregiver there too.

Please use great care if you are planning on going against doctors recommendations with your treatment plan. I suggest getting a second or even third opinion before considering any changes. Treatment plans are created from detailed flow charts from years and years of previous OC patients. The National Comprehensive Cancer Network (NCCN) has this info available on their website. Oncology doctors have many years of education, clinical patient experience and residency behind them plus they go by tried and true treatment methods to hopefully eliminate the cancer completely the first time so patients wont need to get treated again. I know all too well how OC doesnt fit into anyones current lifestyle. Unfortunately no matter what the patient wants, its still cancer and is a potentially deadly disease that must be eliminated.

NCCN site

I continue to have pain in my tongue 6.5 years post surgery, and still require lots of fluid to eat. It's not severe, and I have just resigned myself to it being the new normal.

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!!!

To chime in,

I was interested in Dr Stubblefields work in Rehab Medicine while he was at Memorial Sloan Kettering in NYC, but he has since moved to Kessler Institute in NJ, so I never went to see him, although it’s only a short distance, but I don’t drive anymore. There are You-Tube videos to watch, plus has a few books $$

I did see last year, a speaking engagement he had with the Explorers Club, which he belongs, I believe about visiting the North Pole, which I would have liked to have attended but the date had just passed.

FYI

Welcome to OCF! Your illness as you know, is rare. Im not sure how much help we can be to you. Our members are oral cancer (OC) patients/survivors and caregivers. We are not medical professionals and rarely know much about other less serious illnesses unless they are directly related to OC. As far as the surgery you are facing, it may be very different than what OC patients go thru. What works for a cancer patient could be drastically different than whats needed for someone without cancer. Only medical professionals would know about this sort of thing. I know this is not something patients without cancer can see but you really are very fortunate your tumor is not cancerous!!!

Ameloblastoma info