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?

Regards
Stanvas

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.

Best wishes with everything!!!

Welcome to the forum although I’m sorry you have to join our circle of friends.

What have your doctors told you about your possible treatment? Will the fact that you are on a targeted drug for CLL complicate matters? Will radiation mean that yoou’ll have to stop the targeted therapy? These are questions I would ask the doctors prior to going into radiation if I were in your position.

ChristineB may know if there is a Hope Lodge near MDA where you can stay at a very reasonable rate during treatment.

I believe how difficult radiation is going to be is partly determined by how much you’ll be getting. I have no experience with proton therapy so I can’t speak to that. My husband had IMRT. He was a very fit, active 65 year old but he had 70 grays of radiation and that meant he couldn’t escape any of the side effects. I would suggest thinking more in terms of “if I get hit by all the side effects” rather than “maybe I won’t get hit by any side effects.” Prepare for the worst but hope for the best.

Do keep us posted about how you are doing.

I am a 62 year old male in Austin, Texas. Was diagnosed with Chronic Lymphocytic Leukemia a few years ago. Taking a targeted therapy that has no side effects and I am living a normal life with a long life ahead of me. Was about to start a new combo drug that they have seen puts patients in remission for a long time and had a CT scan as prep..Found a nasty looking lymph node and after biopsy and PET scan the diagnosis is Tonsil cancer primary and 3cm II Cervical neck node secondary with a couple of small suspicious nodes beside it. I believe my staging was T1N1-2 or intermediate as one doctor stated.
So begins my second cancer.

I am having a work up done in Houston at MD Anderson and while I do not have their final answer it looks like they will be recommending Proton Therapy and Chemo.
Will work through the insurance issues which they believe will be approved..eventually due to my CLL cancer and drugs. Will see.
My concern is that having to move to Houston M-F for 2 months will require me to shutdown a young business and be a financial burden on a stressed financal state from starting a business.
So I am considering IMRT instead of IMPT and having it done in Austin and close to home. My thinking is I will be able to work longer and hopefully work some down the road sooner.
Maybe wishful thinking. I am very fit and run/walk every day and weight lift. So I am probably better fit than any time in my life.

I am also a Roman Catholic Deacon and so my ministry is turned off also. This is a big deal for a cleric and his calling.

I have read some of the experiences here and it seems most posts describe pretty intense and tough going. It would appear that after 2-3 weeks into radiation and chemo work and anything else will be impossible so I should forget about everything but surviving.

Anyone have Proton Therapy and what are your results?
Anyone actually work and function through radiation IMRT and chemo?

Thanks!

Genau

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!!!

Future Focused,

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.

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

Connie, I'm sorry to read all this. I can't comment on the pain issue except to say that I had quite a lot of it during treatment and it continued for several months but eventually went away. Like others here I couldn't handle solid foods for at least 6 months after the end of rads.

I too have largely numb fingers and also tingling up my arms. However this didn't begin until several years after I finished treatment, and it has progressed. Finally a neurologist diagnosed Radiation Fibrosis Syndrome, an unfortunate side effect of having your life saved in this fashion. If your husband's symptoms continue or worsen you might consider a neuro consult - although I must add that not all of them are up on this diagnosis, which I gather is fairly recent. Mind you, I'm no doctor so this is just a guess!

There is a guy in New York who specializes in this condition however. His name is Michael Stubblefield and here's a link to get you started:

https://www.youtube.com/watch?v=cp5PGCUYRdE&t=9s

I hope your husband finds relief very soon.

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!!!!

Fibscap,

I had a fibula free flap for osteoradionecris about two years ago. I chose the fibula, although a scapula was offered, but it’s a little thicker, and I wasn’t having a lot of tissue transferred. I have some difficulty walking from the weight loss 10 years ago (130 lbs), and neuropathy, but I didn’t want to add any arm paralysis from radiation I already had (left arm is totally parlayzed now), so I chose the fibula, which surgery took 8 hours.

I also needed vascularity and nerve in the jaw as prior surgeries took them out, so they had to cut into my chest to take a cardiac artery and vein.

Like others, I was out of it for 2 or 3 days. I went from post op to the step down unit, which was very good care. About the 3rd 4th day they took out the trache and put in the speaking valve, which was so much better than using the writing board or hand signals. I could never use the iSpeak app on my phone as it was too small and blurry after surgery.

I was in step down for 7days, but chose to go to a rehab facility than go home. I was there about two months. I had the trache fistula for a
Month before it closed, so I had to cover the fistula before I spoke.

I was in nursing rehab 2 or 3 months, whatever
My insurance covered. The donor site on my leg took 5 months to heal, after they decided to take a graft from groin, did the leg finally start to heal.(btw, I have diabetes so the leg and other wounds o not heal properly).

I hope this helps!

Hi Everyone,

I was an OCF member in 2007-2009. Its been awhile. I had partial Maxilectomy of the upper palate due to having Mucoepidermoid Carcinoma 2 stage.
I have a 2 fold question I hope someone can answer. Having had Oral Cancer in the boney part of my mouth, what are the possibilities of it being linked to MGUS, Monoclonal gammopathy of Unspecified Origins, possible pre-cursor to Multiple Myeloma?
Also, I am currently unemployed as a call center employee. My obturator broke and without insurance or medi-cal I am unable to afford one. Does anyone know where in CA I can receive some assistance. I thought my county facility would assist but they are able too.
Thank you.

You're welcome!!! Sharing and helping is what we are here for. We're all in this together to help make the entire horrible ordeal as easy as possible for each other. The dark days of OC are some of the worst days Ive ever had. Then an extra long recovery with extremely slow progress on top of it can really make the whole thing even worse. It always goes back to the intake... the better a patient does with their intake, the easier everything is.

Best wishes to you and your husband with everything!!!

Try the speech therapist route, then. If you get one as great as I had, she (or he) should know a LOT of exercises for scar tissue in the tongue. Who knew that could be a specialty? Or that tongue massage was a thing? LOL. But it really did help recover a lot of maneuverability for me, and worked out a lot of the scarring ... if that happens to be what's causing your pain, then that's where you'd end up for treatment anyway. Might as well see if they'll give you a referral ... our doctors can be great specialists, but they don't spend solid minutes massaging our tongues the way a therapist might. (Yes, totally weird, and it's to teach us how to do it ourselves ... but they sure learn a lot about the way things 'should' feel in there and give tips how to make it work better.)

Anyway, good luck and please keep us all posted! Whatever you find out is bound to help others, too. ((hugs))