My mom finished 42 radiations and 8 chemo treatments at the end of October for SCC (3/4) on her tongue. She still has a big problem with the thick, pasty mucous -- day and night. Everything she tries to put in her mouth (including water) burns. But here's the new problem: Her tongue is swollen and is covered with some sort of film. She's been on meds for thrush and other possible infections, but they didn't help. Her oncolgist says the "film" is some sort of membrane, but he doesn't know what. He wants her to stop the salt/soda rinses and all other products she's using to see if she is having a reaction to something. He's prescribing steriods to try to get the swelling down.

Does this sound familiar to anyone? Any ideas what this is or what could be causing it?

Thanks,
Overseasdaughter

Coub be a MRSA infection they can for biofilms. You can find more info on the internet.

Hi Suzi,
I'm sorry that your mom is so uncomfortable and for the fear I assume you are feeling. My mom has gone through much of the same post treatment issues. As you can see my mom had rad and chemo-Erbitux, and then brachy therapy. Her treatments were completed in Sept. She also went through the episodes of the mucous, she was given a prescripton for tussionex-that did wonders! Within two days she was able to cope with the mucous-it wasn't so thick and everywhere. My mom is still having issues with her tongue burning-even water being painful! She has no thrush, her dental onc looked last week. She can handle drinking Gold Peak Tea, lemon flavored. She can't have it on ice it hurts too much, refrigerated is best. She too had the swollen tongue, I believe it as from all the radiation. It's quite a sight to look at like that. She was very frightened because at one point she felt like she couldn't breath. Your mom is lucky they put her on the steroids, I have read here on the boards of several people who said it helped. Now, as for the film,membrane...my mom has ongoing issues with that. It was filmy and then it kind of hardened, then began to chip off-she referred to the jagged pieces in her mouth as 'little men' who stabbed her tongue. There were times that a large portion of the tongue that would kind of slough off-like a snake. (I hope I used the correct term there.) Once that film came off she is left with blisters and a very, very pink and raw looking tongue. My mom's docs have seen her frequently, her rad onc really doesn't seem to be upset by the tongue-at least two weeks ago he wasn't. Is your mom in pain? My mom is still in a lot of pain, at times. She is better this week from last, and even in the last few days she seems more like herself. I fall sometimes, but friends here on the forum help me get back up and keep going.
I'm so sorry your mom is going through this, I understand. If she would like to and is able to, I'm sure that my mom would be happy to talk to her and try to help. You can e-mail me anytime. I hope this makes sense, I haven't been able to sleep lately and my thoughts just ramble out.
Take care Suzi.

Donna

Thanks Donna for the helpful reply. It's a relief to find out that maybe this is just a part of the healing process. Yes, my mom is in some pain, but I think most of it comes from dealing with the mucous and other problems. She feels like there is a lump in her throat that she can't get rid of. All during treatment she had the "jagged pieces" sensation on her tongue. I'll check into the Rx you mentioned.

And thanks, Jim, for your information. I'm checking into it also, but I don't quite understand the stuff I've found on the web on biofilms. I should have paid more attention in biology class.

If anyone else has any ideas, please post.

Suzi

Hi Suzi - I don't know if this would apply but thought I would mention it just in case. Early in the radiation treatment, my son had a bad reaction to some anti-nausea medication where he couldn't breathe and his tongue swelled up to the point where he had to make a trip to the emergency room where they gave him two shots of Benadry which was in the same dosage as is available over the counter. The doctors told him he could take Benadryl at home if he had any more problem, but he was also switched to a different anti nausea medicine. This may not be the same thing as what your Mom is experiencing and you should of course check with the doctor before trying anything new to make sure it's ok with whatever other meds she is taking.

Thanks Anne-Marie.

Can someone tell me how to know if there are any new answers to my post once it disappears from active topics, I just saw this last answer today -- two days after it was given.

Hi Suzi,
I'm not sure about your question.

How is your mom doing?

Suzi - I'm not sure what happened, but I had been looking for your last post too, and couldn't see it in the active topics where I thought it should have been, so-o-o what I did was go to the first page you come to where all the general topics are listed and then i checked under "After treatment issues" which is where I think you originally posted and then looked for the topic name ""swollen tongue? membrane?" and there you were! When you are trying to find a particular post of yours, you can also click on the search function at the top of this page and then just put in your member name where it says "Member Number or Public Display Name" and you will see your posts. From there you can go to the proper forum or topic section.

Thanks. I'm still learning how to find my way around the message board.

My mom is a little better. The swelling is down a little and some of the membrane is gone. Some of what Donnarose described above is happening with my mom also. I know that she is just getting plain frustrated at how long this is taking. We all thought that once she had completed radiation, she would begin to gradually feel better. That hasn't happened yet.

Hi Suzi - I'm glad your Mom is a little better and that some of the membrane is gone. Everyone reacts differently and it can get so frustrating and depressing as well - and for caregivers, too. Did they ever find what it was that was causing the swelling? Or were they able to rule out anything? Sometimes it does seem to go so slowly. My son was on meds for depression and at one point, after I tried exercise, deep breathing, meditation, praying, power walking and I was still so anxious, I finally went to the doctor for some anxiety medication for me! I didn't take it for very long, tho' because it made me so sleepy. It's important to take care of yourself, too, Suzi, and keep coming back here to let us know how things are.

You know, if you would like to put something below your signature line so others will know something about your Mom's treatment (like I have below my name) all you do is go to the top of this page under "New Topic" where it says "my profile" and click on that. Then you will see on the left something that says "Edit my profile". Click on that and scroll down almost to the bottom where it says "signature" and you can add whatever you want about your Mom's treatment. After that go down to the very bottom of the page and click on "Update".

Suzi,
Anne-Marie is right, everyone does react differently.
I wish that they would tell us just how difficult and frustrating the post tx's can be. I can tell you from my experience, there are good days and bad ones. What we are going through now are good hours and not so good. I use a lot of positive thinking, I try to fins apositive spin in everything. It's not easy sometimes. Then....when I get alone and jump on here I cry and vent, or like my last one, I celebrate.
My mom has a very strong sense of being. I know if it's up to her, she'll get through all this.
Give here my best. You are all in my thoughts.
Donna

Suzi,
Anne-Marie is right, everyone does react differently.
I wish that they would tell us just how difficult and frustrating the post tx's can be. I can tell you from my experience, there are good days and bad ones. What we are going through now are good hours and not so good. I use a lot of positive thinking, I try to fins apositive spin in everything. It's not easy sometimes. Then....when I get alone and jump on here I cry and vent, or like my last one, I celebrate.
My mom has a very strong sense of being. I know if it's up to her, she'll get through all this.
Give here my best. You are all in my thoughts.
Donna

No, they never found the cause of swelling or infection. Steriods helped only briefly. She saw the ENT(who originally diagonsed the cancer) today for a follow-up. He feels "something" on her tongue -- thinks its the tumor growing again but not sure. She will have CT scan Thursday to check lungs and neck to see if it has spread. She's at peace. She's ready to die, but fears a painful death.

Sorry, Anne-Marie, I added a signature, but failed to make it the default. Hopefully it will appear on this one.

Suzi - your signature info looks just fine! It helps everyone to better respond to your comments or questions. You mentioned your Mom refused surgery. What kind of surgery did the doctors recommend and was it because of the results of a biopsy? I'm so sorry she is having to go thru this and I know it must be really hard on you, too. Hope everything goes well on Thursday with the CT scan.

When my mom first found the sore on her tongue, neither she nor the oral surgeon thought it serious. (She had something similar 10 years ago, it was removed in the doc's office, end of story.) She waited a month or so to have this one biopsied because of my niece's wedding -- just in case there was more to this one than before. As soon as she had the biopsy, she started having a lot of pain, was unable to wear dentures, eat, etc. Pathology came back saying it was malignant, but oral surgeon still said, "No problem, we just need to take a little more tissue." Within a few weeks she had unbearable pain, was sent to the ENT who knew it was serious and sent her to MUSC (Charleston) to meet with a surgeon. The surgeon wanted to remove large portion of tongue, section of jaw, and some lymph nodes plus reconstruction. This was really the only course of treatment he offered. After hearing about the recovery time, she decided against it because of her age (76), a pre-existing heart condition, etc. She thought death would be easier. A few weeks later as the pain intensified, she saw an oncologist to see if there were other options. This led to the rad/chemo. The oncologist never gave good odds of the rad/chemo being successful, but felt it was worth a try. She's not sorry she refused surgery. She doesn't think she (or my dad) could have made it through that ordeal.

I'm with your mom on that one Suzi!
When it was thought my jaw was the only tumour, the extensive surgery they suggested, plus rad and chemo, had me horrified, although I'm only 58!
If it had meant survival I THINK I would have gone for it, but am not absolutely certain.
For me the 'Quality of Life' issue was a big one and I've had a brilliant time, including a trip to California, these last few months --- in-between blood transfusions and pain and fatigue of course.
I think if I'd had the surgery in June, I would still be in a much darker place right now, with still no guarantees.
And my kids and partner understand and stand by my decisions.

Brenda