Well, in 07 I went to my doctor for a lump under my tongue on the left side. She said it was a blocked salivary gland, no tests were run. About 2 years later and many emails to her about this blocked salivary gland that hadn't gone away, I went to the ER hoping for tests, I neither liked nor trusted my PCP.He concurred with her and said blocked salivary gland, suck on lemon drops, no tests. A week later went back to my PCP on 9/18/09 she again said blocked salivary, suck on even more lemon drops, still no tests. Changed insurance on 1/1/10, went to my new PCP showed her the lump approx March, it was getting very painful, radiating to my jaw and back molar. ENT referal immediately. The ENT in all his wisdom, kept throwing out options, well we could perform surgery or just wait and see. I told him to perform surgery so on 9/18/11 I had surgrey and was diagnosed with Mucoepidermoid Carcinoma. I have had a major surgery to remove all of my salivary glands, neck dissection removeing 16 nodes with feeding tube. Hospitalized for 10 days. Had a tooth pulled. Am now undergoing 33 rounds of radition with severe side effects, my new surgeon was very upset with the ENT as he left no margins and he had to remove the whole floor of the left side of my mouth and move a muscle over to fill in the hole and use a skin graft from my thigh. I have 18 more rads to go and can't wait to start living my life without cancer. Some days are good others arent', some days I just want to give up but I know that would be stupid. So I keep moving forward take my morphine and try to live through this pain, just like all of you.

Just keep on fighting this stuff anf you will win. Never look back but forward. You never mentioned any biopsies at all. Didn't the ENT take any? When the Drs at Ohio State CCC told me to chew lemon drops, I tried and it just made more pain. Did they give you a pain pill for break thru pain? Morphine didn't do anything so I am on percocet and methadone along with magic mouth wash. Get and keep that upbeat that you are going to win. Laugh when it hurts even tho it is hard to do. I thnik you are a fighter and will win and never even think about giving up. I know whatg it is like and you will have a lot of pain from the rads. I had rads, chemo and rad seed implants. Yep it hurts still but I laugh and go on with what life I can muster with a grin.

Yes I did have a biopsy on the opposite side of were the tumor was. It was clear. I swear it was like dealing with Laural and Hardy at that ENT's office. He told me for months he didn't think it was cancer but that I had something "weird". No kidding. I finally got tired of his B.S. and said just take it out, he was actually shocked when it said cancer. He then referred me to a wonderful doctor at UCSF named Dr. Eisele. Great doctor no B.S. with him. I have magic mouthwash but it's been making me kind of nauseous. It does hurt like hell and food tastes like crap and that really ticks me off!!LOL Just some days are better than others, today's been one of my off days. Take care and Merry Christmas! Shelly

Shelly,

Sorry about your miscue's but I doubt that what you had back in 07 was cancer as this cancer is quite aggressive. That said, was there ever a biopsy to confirm your cancer?

It would be helpful if you provide your timeline details in your Signature Line so that any responder won't have to answer your future posts "in the dark".

Let us know if you want to know what's ahead of you.

No chemo?

Welcome to OCF. Towards the end of treatments it does get difficult. I wanted to quit too. Please dont even think about that, its really a bad idea. You have come so far and have a few more, you can do it.

About the magic mouthwash making you nasueous. Are you swalloing it? MM is made to swish in your mouth for maybe 10-20 seconds then spit out. The ingredients can vary, mine was made of lidocaine, malox and benedryl. If nasueous ask your docs of anti-nasuea meds, they work wonders.

If the pain is bad tell your docs. There are stronger pain eds. Alot of us have used the fentayl patch. Its the strongest pain killer and comes in alot of different doses. Its also very simple as it gets changed every 72 hours. So for 3 days you dont have to take meds unless you have occassional break thru pain.

Best of luck with everything. Never give up!!!!

Get used to no taste or bad taste food Expresso, It will be this way for a long while maybe, but you need the nourishement to keep your body going. You even have to forcefeed when it hurts so bad you want to reach in your mouth and rearrange it. LOL After 3 1/2 years I still get that ungodly burn and bad taste but I am here to at least try. You can do it and get used to it. There are hundreds if not thousands of us that understand what you are feeling. Good luck ..

The lump under my tongue was diagnosed as mucoepidermoid carcinoma. The ENT Dr. Ford in all his wisdom decided not to do a biopsy on the tumor but to remove it. It came back cancer, mucoepidermoid carcinoma. According to my surgeon Dr. Eisele, if they had done a biopsy back in 07 I would be in alot better shape than I am now. Also according to my RO Dr. Ally if they had caught back in 07 it might have been low grade and I wouldn't have had radiation. It was definitely mucoepidermoid carcinoma back in 07 there is no question regarding my diagnosis. Just that some doctors are bumbling idiots who shouldn't have a licence to practice medicine. I was told this cancer is very rare and aggressive by my surgeon. After diagnosis I went in for for my 2nd surgery. No Chemo isn't indicated because I have no metatasis. Don't know my complete timeline have to get on that. Happy Holidays, Shelly

Hi Shelly,

I am so sorry you are having to go through this. You are right, mucoepidermoid CA is very uncommon. I am assuming yours was high grade by the time they diagnosed it? I had high grade mucoepidermoid CA of the sublingual salivary gland. There aren't a lot of us on the forum with that particular type of CA, but the radiation treatments and side effects are the same for everyone! My RO told me there are about 400 cases of mucoepidermoid CA in the USA per year-- aren't we the lucky ones (LOL!). My understanding from my team at Moffitt CA Center and my RO here is that chemo is not used with this type of cancer as it does not respond to it. Do you still have a feeding tube or was that just for the surgery? As everyone here will tell you, make sure you are getting plenty of fluids and calories and protein! Supplements are great-- protein powder, ensure, boost, carnation.

Where exactly is your pain? I am also going through the radiation. I had treatment number 17 Friday, so we are neck in neck (no pun intended). A week ago I was having severe pain in my mid-neck area with swallowing and ended up in the hospital due to vomiting. While I was there they determined I probably had a yeast esophagitis (even though there was no evidence of yeast infection in the mouth/throat), or at the least a bad esophagitis. They put me on oral diflucan and high doses of prevacid and gave me a magic mouthwash composed of lidocaine and carafate (I am supposed to swish and swallow this one). I'm not sure what did it but within two days I was off the narcotics. I have been fine with ibuprofen since then. Just something you might want to look into if that is where your pain is. Everyone's pain tolerance and response to pain med is different, though. Best of luck to you and many prayers!

Wow Susan you and I are almost identical in diagnosis and treatment. Mine was intermediate to high grade in my submandibular. They removed all the glands but left the parotid. I had treatment number 16 today so yes we are neck and neck. I have been on morphine and magic mouthwash. I develeoped mucositis and was unable to swallow, which is still a challenge. I only had the feeding tube in the hospital. I also have the mouthwash for yeast infection, which I do, and floride treatments daily. My neck and jaw are getting very sore right now and I noticed new sores popping up so tomorrow I have my weekly appt with the RO. My sense of taste is fading in and out. I can't wait for 3 days off coming up! If you want to email me privately please do. I'm so glad to finally meet someone with the same cancer in the same area as me. I'm also on the boards on cancer survivors network, it offers a ton of support also. It was nice of you to message me back. Happy Holidays. Shelly

sadly i know the feeling of being misdiagnosed. I was told from november 09 to march of 10 that i didn't have cancer, no way it could be cancer cuz i was too young, and it didn't look a thing like cancer. Sure enough when i put my foot down and made them do the biopsy it came back as stage 3. I am in the process of malpractice suit, which i suggest you look into if you are intersted. 3 years is a lot longer then i had to endure, and my lawyer is almost guaranteeing me things from this suit. i am not sure if I am going to go through with it, but my family wants me to.
it's not fair that doctors do this to people, and we are the ones who suffer in the end. If they would have got mine in november when i found it, i may have not had to go through radiation, and may not have had to have the neck dissection, but who really knows.

As for pain, when I was going through radiation, I was in severe pain, until they put me on a fentanyl patch and oxycodone, so if you are still in some pretty bad pain, tell that to your docs, they are supposed to have your pain under control!! I also had to have a peg tube, because 3rd week in i was no longer able to take anything by mouth because of all of the sores. Magic mouth wash and lidocaine did nothing for me.

One thing that worked nicely, if you are developing sores, redness or peeling on ur neck/face area, try using a warm wet wash cloth on the area for like 30 mins, and then take that off and put on some aquaphore!! That worked wonders for my neck and chin. I tore a normal hand towel in half, and would get it nice, warm and wet, and wrap it around my whole neck. I left mine on for almost an hour cuz it felt good. It would take off dead skin, and any scabbing. And then i would smother my neck in aquaphore. I did this probably 3 times a day, maybe more when it was really bad. So maybe give that a try if your skin starts peeling and developing sores.

Wishing you luck with your treatment, and hoping the rest goes as smoothly as possible!!

I find aquaphor very soothing to my skin, too. However, check with your RO before you start using that. Mine likes aquaphor after you are totally done with radiation. He said he doesn't want it on my skin when I go in for my treatments-- I guess it somehow interferes with the radiation. We now have a compromise where I use it at night/shower in the morning before treatments and pretty much get it off!

Shelly, I will PM you!

That's how I used it, too, since they told me that I shouldn't use it right before my treatments. They also gave me a bunchof free samples of the aquaphor, and loaded me up with more every time I needed it.

Thank you bethers0808, I am just starting to get the redness under my neck. It's looking pretty angry right now. I will start doing what you say about the towel and aquaphor. I have been putting aquaphor on my neck but not the towel. I'm so sorry about your cancer, your too damn young!! You've been through so much and I love, love, love your positive attitude. Your an inspiration. I have consulted a lawyer. I am so pissed at those doctors for brushing me off. I have to give him some more info then we'll see if I have a case. Luckily even though I have a very aggressive cancer it stayed small and didn't spread. The question he wants answered is if they caught it in 07 can we definitively say it would be low grade. My pain is being managed so far with the morphine and magic mouthwash. I was also lucky in that my cancer was in the floor of my mouth, although my surgery was an extensive and complex surgery, yours sounds much more complex than mine. I wish you so much happiness in your life and Merry Christmas to you and your family. Shelly

Strange that different docs say different things. Mine never said anything about aquaphore while going through treatment. But I never had it on during my treatments. I would do the towels until i got to treatment. Take them off for treatment, and do towels on the way home from treatment, and then would apply aquaphore, just because I didnt want it getting everywhere. But never was told it could interfere with radiation! Strange strange.

Shelly~ I am glad your pain is being managed and maybe talk to your doctor about getting their professional opinion about what they think it would have been if they caught it in 07. If they put it in a letter that states in my professional opinion, if this was found in 07, it would have been low grade, and this this and this wouldn't have needed to be done. My doc was willing to put in a letter that in their professional opinion i wouldn't have needed radiation and would have only lost a small piece of my tongue instead of half of it. But I am not sure what I will do yet. My doctor wants me to follow through with the suit, but I am not sure if I will, cuz that could damage 2 docs jobs and what not. That's a tough decision.

Hope you treatments go well throughout and keep your chin up. Once you get through these treatments, usually a month or so after you feel so much better!

I was told no after shave or anything before treatments. It does interfere and could possibly cause problems. I used Aquaphor and pure aloe during treatments and came out mostly OK except for a few cracked skin areas and oozing of gunk . This cleared up a coupls of weeks later.

Shelly, silver sulfadiazine has been around for years. I found it extremely helpful during the last weeks of RT when Xclair and Miaderm didn't quite do the trick.

David 2

I used to wonder what a handful of clean good old muddy mother earth would do. One nevers knows.

There's a store I love called Lush, their products are pretty much all natural and I bet you could find something pretty close to real mud! They have some really soothing washes I've been using, very moisturizing. You could look them up online! Happy Holidays! Shelly

I had a similar experience. I am undergoing radiation right now and am in my second week. The sores in my mouth are terrible. I also want to stop treatment. Can you offer any relief for my sores. Thank you and I hope you feel better

Susan,

It's a tad unusual to have that reaction so early in the Tx. You definitely need to bring this to your RO's attention and get a prescript for what most call "magic mouthwash" and some effective pain meds. You need to get this pain under control as you MUST and I MUST emphasize MUST continue to get calories and water down your throat each and every day. You don't mention a PEG but even if you do have one you also must continue to use your swallowing muscles throughout your Tx or you could end up with post Tx swallowing problems.

Also it is always helpful if posters can add a Signature Line which gives readers and responders more insight into answering or understanding a post.

Susan, I wrote a response to your other post about different medications to ask for. Its best to always begin your own new posts so that each member who makes a post will get their own answers to questions.

The site is confusing for computer illiterates. I just signed up yesterday I have a lot to work on but I'm grateful for this site and feedback.
Thank you

Thank you David for your help. I know that is heat the RO told me too , it's too early. But I have the sores they are painful. I'm going to ask him for a pain killer and that magic mouthwash. That is what it is called?
No I do not have a peg thank goodness. I eat cottage cheese and plan macaroni boost and ensure. My energy level is decreasing and this medication for what RO called a yeast infection is making me dizzy.
Did u go thru the same thing?
Thank you gotta figure out the signature line

I would go a step further than David and recommened that you have your entire pain management program evaluated for efficacy. Morphine is typically given for "short term" pain relief and also for breakthrough pain. You will also need to be on a "long term" pain med, such as Fentanyl or Morphine time release patches. RO's and PCP's are terrible about prescribing these - talk to your MO or get a referal to a pain management specialist. Pain control is a basic patient right - demand it.

It is early for mouth sores, they typically start to show up in the third or fourth week. The yeast infection (AKA candidiasis) or Thrush, is common when the pH in the mouth changes for any reason, dry mouth, etc. This is probably the main source of your mouth pain. It would be a burning sensation, similar to mouth sores. You also didn't mention chemo - some chemo drugs, especially Cisplatin will exacerbate mouth sores.

Whatever you do, do NOT stop treatment. The odds of survival are greatly diminished if you do.

By the way, many of us here were misdiagnosed or diagnosed late. In the scheme of things many doctors (and dentists) never even see an OC patient during their entire practice. SCC is relatively rare - your form of OC I can count on one hand in the 8 years I have been here.

Hi your cancer sounds a lot like mine... your information is helpful and story inspiring. Hopefully things are going well for you.
Cheryl

Its strange the ENT DRS didn't do any biopsies surgery...
The mucoepidermoid CA is not common in people. I think yours high grade by the time the doctors diagnosed it? I also had high grade mucoepidermoid CA before two years the sublingual salivary gland, but the radiation treatments and side effects are the same for everyone!
As i understand with my team at Moffitt CA Center and my RO here is chemo which not used with this type of cancer as it does not respond to it.
As everyone suggested to make sure you are getting plenty of fluids and calories and protein! Supplements are great-- protein powder, ensure, boost, carnation.

Some ENT doctors DO do biopsies. The one I went to does them. There doesn't seem to be any hard and fast rule. Maybe some have had more training in that area. Mine also specializes in cancer patients.

Take care,
Eileen

Ron's ENT did his biopsy and he's the one who did the glossectomy. i was there in the office when they did it. Ron went to his oncologist for his regular Lymphoma checkup and showed the doc his tongue, doc called in ENT in the office building to come take a look and he said "OH F" and Ron knew it wasn't good, shit I knew it was cancer when he finally showed me what was going on with his tongue, I bout shit! His oncologist gave him the specialist ENT in this field at the Cleveland Clinic main campus downtown Cleveland. Thank God for him and his team! But I still swear Ron had 9 lives!

Hi Shelly,

I think we probably have all the same doctors. I had Dr. E too. I'm in San Francisco and was at UCSF as well. I'm so sorry you were misdiagnosed. I was too. Its very upsetting and frustrating. I hope you have a full recovery from this and that you won't be in discomfort for much longer. Feel free to PM me any time with questions.

Get well soon! Kate

Thank you! Isn't Dr. Eisele awesome. I adore him. I feel so validated when I see him. Like I'm a real person and not just a number. Take Care, Shelly

I'm not sure if your referring to me or not but my tumor was int/high grade when they finally caught it.