Hi All, My first post... Hopefully we can give each other advise as I have been through the surgery and treatment and now recovering! I was diagnosed with cancer on the right side of my tongue (squamous cell carcinoma) with the possibility of it spreading to my jaw and lymph node. I had surgery in March 2018 removing half of my tongue and flap reconstruction (from my left thigh) a large number of dental extractions, neck dissection to remove lymph node, lip and jaw split to access the tongue etc. They also discovered that the cancer had spread to my Thyroid and these were removed recently (Dec 2018) Like many, I completed the 33 days od Radiation & Chemo treatment - June 2018. This is when the challenges really start! Talking, eating and just trying to be normal again. I lost my job and have no personal insurance so became very depressed and now experiencing financial hardship - but we battle on!!
I was given the all clear last week - they believe they have cut out all the cancer and it has not spread any further! YEY!!
One of the hardest things at the moment, and always has been is the saliva & Mucus! Although better, it still drives me nuts! I have tried just about everything and my doctors always just say - it takes time! Recently I have "Glycopyrrolate" which has helped a bit but does increase the dry mouth. Has anyone found anything that helps? I still have the stringy Mucus down the back of my throat and produce too much saliva that I cant talk - then of course the dry mouth sets in!
I am also considering trying "Hyperbaric Oxygen Treatment" - mainly for my jaw and nerve damage in my mouth, has anyone tried this?
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.
Welcome to OCF, Tammy! Im sorry you have been recently diagnosed with oral cancer (OC). In some patients its just not possible to determine what caused their OC. There are just soooo many variables even if it would be from a genetic predisposition. Actually quite a few here are part of the "no known cause" segment that is 5-7% of those diagnosed. Regardless of what caused your SCC, it needs to be eliminated.
If you havent already gone for a second opinion you might want to get started making those arrangements. If you are able to go to a comprehensive cancer center (CCC) even better. The CCCs are the best of the best in the US. Patients treated at CCCs have better outcomes. CCCs attract the brightest and best physicians who use a team based approach so all the specialists are on the same page discussing each patients case at tumor board meetings. Patients and caregivers are able to attend as well.
Theres a million and one little things to do prior to any treatment weather its surgery alone or surgery followed by rads with/without chemo. I suggest spending time reading here and also on the main OCF site about your illness. Educating yourself about OC will help to make you a better advocate for yourself. For now anyone you talk to about your illness that offers their assistance take their name and full contact info down. Let the family and friends who offer their help know when the time comes you will let them know what they can do to help.
For now you may want to start eating all your favorite foods, desserts too. No matter what treatment plan you will have, your ability to eat is likely to be temporarily compromised. You definitely do not want to go into this with any food cravings so eat your favorites now before any treatments.
Thank you so much for the update. How encouraging!! I guess I stumbled on your message during a good time. I finished my radiation last week and had my first post-radiation doctor appointment today and took a bit of a tongue lashing for losing weight. So your message just reiterates that I need to work harder on my intake to have the calories needed to get through this. Best wishes for a continued happy and healthy life with your spouse!
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!!!
They do have medication to help with excessive mucus, but it may be inappropriate at this time with a recurrence, and has its own side effects, but I’m not sure in your case. There is a part of recovery where you do have excess mucus, then dry mouth. For some reason fewer patients continue with excessive mucus.
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.
The best place for locating a specialist normally would be going thru your insurance company. Even if you currently are without insurance, are you able to check your previous insurance companies website for providers? Are you able to call the original place where you obtained the obturator? If not, maybe they could help with giving you info how to get your obturator repaired? Id also recommend asking at your treatment facility and ENTs office where they might have contacts to help you find the right doc.
Im not sure how much we can help you. With OCF being a very small non-profit, surprisingly we maintain a worldwide reach. Its highly unlikely you will be able to find someone with a similar diagnosis who is currently active on our forum to view your post. Plus they would need to be from your specific area and use an obturator. Im sorry but OCF does not rate or maintain any info of what physicians/dental professionals provide, specialties, their locations, education, etc. Theres online doctor/dental referral sites Ive seen advertised on tv (sorry but I didnt pay attention to the names of the referral websites) that might be a way to find the type of doc you need. Use care when using thru referral sites as you never know what criteria they use to rate docs or how up to date their info is. To me the referral places seem to be a way for someone to make money. Maybe the doctors listed all pay fees to instead of earning their way to the top spot for being a great doctor? After care for OC patients leaves alot to be desired, especially when it comes to dental needs.
You mentioned you had been a member for a couple years. I can combine your original account with this one so you have everything all in one spot. Please PM me any info you can remember about your old account. I need things like your former user name, screen name, email address used and anything else that you can remember.
Hope you find what you are looking for. Best wishes!!!!
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!!!
Oh, good heavens, you do have a full load! Hope your kid is doing okay?
Maybe you could arrange to 'slip' and fall and be hurt and have them run some tests on YOU while you're there?
You never know about the allergies, though I'd think it more a symptom at this point than an answer. After my treatment (treatment, mind, not the cancer), my immune system basically thumbed its nose at me and gave up on everything ... and I developed the oddest allergies to add to the list I already had. It took a couple years for things to settle down and get a grip after that. Still have the allergies, but at least I can tell what they are now, instead of just reacting to everything. Sigh. Life is weird.
I am seeing a swallowing therapist monthly. She said, this is not something you should think of as temporary, but for life. It makes sense, all our body functions decline with age, but those that are affected by external factors will be more susceptible. I think of it as sun skin damage. It isn't noticible when you are young, but it does show up in your elder years. The exercises you posted, are part of my regimen, but there are many more. I don't have a PDF copy, but I found this that has my exercises and a few new ones.
My therapist advised to do 60 various swallows per day, and I can count swallows when I am actually eating or drinking, but fall under one of the exercises.
One note of my own opinion. Swallowing improvement is only part of issue with getting back to normal. I am eating more foods, but still having issues with chicken, pork, beef, etc. I think throat saliva is essential, no matter how good our swallowing returns. So that improvement, has to return through time. But having a glass of fluid handy, could help with those foods that are getting stuck. But my therapist advised, don't use that as a crutch all the time, or I will get dependant on washing down every bite. Best of luck, it sounds like you are right on top of your recovery needs.
The dental work is necessary as the mouth does not heal easily and well post radiation.
The saline soaks are good for sores, especially weeping sores as the saline dries out the sores. I gave my husband the saline soaks all through his treatment and that prevented him from getting a lot of sores. The problem with sores is that if not well cared for, they may become infected and the patient’s immune system is already compromised. However, there are many on this forum who have not done saline soaks, only the cream. It is true that the cheap kind is fine. You just have to make sure it does not contain alcohol.
You will learn more about caregiving as you move along the caregiving journey. Do post and ask when you have questions. There are others on the forum who have a lot of experience with cancer.
Hello Nick - I know you wanted to finish strong. Don't look on this setback at the end as a failure, you had a near perfect think going, LOTS of people would gladly trade places with you.
My 5 weeks of treatment went very well, only a little sunburn on side of neck. But the guy who had the treatment slot before me got burned up so bad he had to stop in the middle of treatment twice so he could heal up.
Then the mucositis arrived, it was brutal, so bad I would have to use lidocaine in the middle of a meal just to finish the meal. I survived on liquid protein shakes.
You will get there, just keep fighting day by day. Improvement probably won't be linear, some days you improve a lot, others you seemingly go backwards.
I am 16 years post treatment this and I noticed that my dry mouth symptom is getting worse and worse since last June. During day time, I have to sip water every 15 ~ 20 minutes otherwise, My mouth will feel very sticky. Needless to say, every morning my mouth is sticky and burning, I talked to ENT doctor asking for medicine to stimulate saliva but the doctor said it has been so far out from radiation, the medicine won't work any more. I am wondering if anybody here has experienced similar situation like this, and how do you handle it?
I am linking an article that broaches the topic of cancer survivorship. I think we (cancer patients and their families) need to get better about asking at the outset what life will be like after treatment is completed. This article discusses calling for a shift in thinking to focus not just on treating tumors but also on minimizing lifelong medical problems that can be caused by malignancies or by surgery, medication, and radiation.
Glad to hear he enjoyed his cottage cheese! lol I'm happy for him that food has for the most part tasted good to him through this process. So many things we take for granted until cancer! I'll be thrilled for the day I can indulge in cookie dough and it tastes like the best thing on earth again.