Hi - this is my first post but I have been reading for a month now. I have tried to research this question but haven't found a question like our situation.

My husband had reoccurance DX 9/10 and had a paramedian mandibulotomy, radical hemiglossectomy and resection of the floor of mouth 10/7/10 with a free flap reconstruction, jaw was split open and plate inserted. Tumor was fast growing, 5.6x4.2x3 and 2nd one further back on tongue was 1.2x.8x.6 moderately differentiated. 4 out of 15 lymph nodes under his chin had metastic SCC with extracapsular extention. Finished adjunant high dose chemo (3) and 30 rad on 12/17/10. So here is the question.

Two and half weeks ago his new tongue and his orig tongue were the same pink color for the 1st time since surgery. 2 weeks ago he mentioned his tip of tongue was burning (that was his symtom when cancer returned)and he had something wierd on his tongue further back too. I looked and was surprised to see his new tongue was again white coated, and a white long raised area was along the surgery line onto the original tongue about 1/2 inch. Dr said it was thrush and gave meds. (It is a long story but we switched to Mayo MN in Oct, an 11 hour drive for us which is why we have been going to our reg Dr) Next day he started to leak fluid from his neck insision (has had face swelling since surgery) which turned out to be infected so he went on antibotics for that too. Thurs we went back to Dr. and there was no improvement, in fact now there are white raised areas inside his lower jaw too. He sent us to an ENT who said it is definitly not thrush, didn't think it was cancer returned but rather sores due to chemo/rad treatments and put him on 6 days of steroids. Emmett is the first patient she seen with tongue cancer. Now 3rd day and there is no sign of improvement yet. There is no pain with these areas. Has anyone else gotten these white areas weeks after treatment has ended? My husband does not believe it is cancer returning and does not want to drive the 11 hours back to Mayo like I would so he has asked me to post the question here if this is a common side effect others have had weeks after treatment has ended? I've seen the posts referring to white spots but they talk about them being painful, during treatment and I was wondering if those sores and thrush are the same?
Thanks Karen

That really doesn't sound fun at all, and i understand the worry. Every now and then, i get white patches on my tongue that show up and i am 6 months out of treatment, but they go away usually within 2 weeks and don't hurt. But that it's spreading makes me wonder. It sounds like thrush, but thrush meds didn't help. they also had him on antibiotics for his infection in his neck, but what kind of anti's did they have him on? Pill form, or IV? Do you know the name of the anti's? When I had a staph infection in my neck it popped open like 3 weeks after my neck dissection, but they put me on iv anti's i don't remember the name, i know it started with a c, and they had me on iv for 3 days, and then they had me on pill form for 10 days after and it didn't start getting better swelling wise until the 7th day of pills. But I really don't know what to tell you.
The Mayo is a CCC and they are one of the best in MN for oral cancer. But I go to U of M and I see one of the top rated oral surgeons in MN for oral cancer, and he's always taken care of any little issue i've had.
I wish you luck and hopefully you get this figured out asap, sorry i couldn't really be of much help!! I know my sores didn't go away from radiation until like 2 months after, but he said they don't hurt. Mine hurt but eventually stopped hurting but were still slightly whiteish pink for about 2 weeks or so after they stopped hurting.

Hi Karen, welcome to OCF. Your husband sure has been thru alot. Ive had a mandibulectomy and know how hard it is to recover from. Your husband had it much worse than I did with having a radical hemiglossectomy and resection of the floor of mouth plus the nodes too. I will try to give you some help.

Thrush is a white coating inside the mouth that is painful. If it is not treated it can lead to further complications. Since your husband said it does not hurt, then it probably isnt thrush. One question about this...Does your husband have full feeling inside his mouth? This may sound rather silly but Im only trying to help figure out what this could be. Sometimes after major surgeries, there may be limited feeling.

Since your husband recently finished with chemo and radiation it is probably just the mouth sores that most of us experienced. Antibiotics and steroids would not cure mouth sores. They may help but he must heal on his own. What is odd though is the white coating, that normally is thrush. I wish it was easier to help you with this over the internet. I did the best I could with it, Im hoping some other members with experience will respond to your post. One last thing, I would be cautious of the doctor who has not treated other oral cancer patients.

We have a saying around here...When in doubt, check it out. If it were happening to someone in my household, I would take them back to the doc. Best wishes with his recovery. Please keep posting so we are able to help support you in other issues that may come up.

Hi
The antibots were Nystatin to swish and spit and Diflucan once a day he crushed into his PEG for Thrush and Augmentin for the infection of fluid. Emmett has no feeling in the front area of his mouth due to the jaw surgery, on the right side and on his flap side of tongue. He does not complain of pain but he has had a little burning in the tip of his orig tongue and where the white area is he says it feels like his tongue was burnt. These areas did not appear until three weeks after TX. I called Mayo this morning because there has been no improvement since starting the steroids or the anitbotics and it has spread larger and in more areas since we first noticed the problem 2 1/2 weeks ago. I asked about getting a biopsy. Our Ongologist who called wants to talk with ENT surgeon so we are waiting for a call back. We have really been happy with our Mayo team even after we have come home. Will post with what they recommend.

Ron has the EXACT same thing happening with him! No improvement either and he's had both scripts too. and ENT doc says he "burnt" his flap. Internal Med Dr says he has thrush she did a culture...and...I've never mentioned this cuz I kinda got scared myself, but I got it now. Yes I have the burning tongue, and the white stuff on MY tongue. She said I got it from eating from his utensils and drinking from his cups, bottle, can. She said DO NOT use any of his things. So now I am on Nystatin also and one day OK maybe couple days than it burns again. It wore me down, made me ill and very tired and she said from the infection going thru my system and digestive system also was causing me to feel so tired, that tired part is better now I'm able to stay up past 8PM. So I just started taking it the 19th and I have to do it 4 times a day for 10 days. Ron isn't better at all he says.
I have to call his ENT already and that magic mouthwash, it is not covered on his insurance and he said it's over 90 bux. So he didn't get it. And believe it or not his mother stated her tongue hasn't felt right either and is burning but she hasn't used any of his things at all. What is going on with this shit? I was too scared to tell about myself...

Well call me old school but 10 hour drive or not... i would go back to the Mayo clinic and stay there until they figure it out. It's hard for people to make you wait and take their time trying to figure things out when you are in their face! You need to advocate for your husband. I know it sounds pushy - and believe me I try not to be - but bottom line... his health is the most important thing... and you/ve given your doctor time to figure it out but nothing has come of that and times a wasting!

Good luck - and Suez it sounds like you guys have some kind of communicable infection... weird... and scary.

Karen, After my aunts partial gloss, she had white "things" on her tongue also. The surgeon had a name for it, said it was normal to see these develop after surgery and assured her that they would "fall off". It took several weeks but indeed they did literally fall off. I wish I remembered the name he used but clearly remember hearing it was resulting from the tongue surgery. Hopefully, it is nothing to be concerned about. But you do need someone to give you answers just for peace of mind.

D

We heard from the Surgeon and we have plans to go to Mayo next week for appt with him and a PET. We e-mailed him pictures too. Thank you for all your concern and posts. I wrote a more detailed post under Intro Yourself forum so to not repeat myself to much I am happy with the plan.

Suez - that is crazy what you are going through too. Emmett takes nothing by mouth - not even water which he should be, so I know he hasn't burnt his tongue but I will make sure I don't use anything he has.

Cheryl - I hear you and I agree. The problem is my husband takes a more "head in the sand" approach and I want to hit it head on so I feel like I am always pushing and since he is not really able to express himself easily I worry I am pushing him into something he does not really want. Like the surgery, when the Dr. described what would be done - he first said he didn't want it. Since it has changed his life so much (and he has aged before my eyes) I sometimes worry he had it just for me. It feels like a really fine line we walk. Emmett says he want to fight but his actions say something else. So I get confused. Okay I am getting carried away and this probably should be in the caregiver forum. Sorry. We wish you the best with your surgery!

ya think Cheryl? crazy isn't the word just weird. It's not like we ummm you know are passionately in lip locks. (tee hee hee gotta keep the humor sorry)doc says DO NOT USE THE SAME UTENSILS! and I'm like "ok mom" lol I'll just keep doing the nystatin and I need to get my dishwasher fixed, it says to boil utensils used with thrush so I need that dishwasher fixed so we can kill this crap on all cups. Ron does have his own cups only he uses but he does use forks and spoons that I just wash, but I do use the tap water as hot as it can get and last night I soaked the hell out of everything. I'll just wait and see.

Hi Christine,

This is Jennifer. I just joined the forum two months ago.
My mom had SSC on the cheek. You have been fighting for
this in the past few years. It must be so hard.
I hope you are feeling better now.

Jennifer

Hi Jennifer. Welcome to OCF. I hope we are able to help you with your mom. There arent alot of us who have had the tumor in our cheek. Where are you located in NJ? Im in Allentown PA so not too far from NJ. In fact I grew up in Jersey.

I am doing fine. Ive gone thru SCC 3 times and am luckily still around to talk about it. Sure I have my share of after effects but overall I really am doing very well.

Dont worry, your mom will get there too. This kind of cancer can be so hard to manage. Do you have any questions we can help you with? There are so many wonderful supportive members who can help you.

If you are able to add a signature that would be great. It helps us to get to know you and your mom. Its under the my stuff tab, then preferences. Scroll to the bottom and type whatever you want in the box. Please start a new post so we can address you concerns as well as the original posting members (Sorry Karen). Thats easy to do, after you click on which topic you want to read about, click on new topic and begin your post.

Looking forward to hearing more from you.