Just a small correction--everyone else has given most of the list I would have made otherwise--if you need trays for flouride gel, you can go to a regular dentist to get those made, it doesn't need to be a dental oncologist though it is great if you can get to see one. Otherwise, it would be desirbale to find a dentist who knows about the effects of radiation on the mouth anyway, because you will need to have all your teeth in really good shape when you start radiation.

I too have scc on the left side of my tounge and floor of mouth. I have been dealing with this for 9 years and many surgeries. The MD now says I should have a modified radical neck resection with placement of trach and feeding tube(temp. shold be) Did your husband have any of these and if so how long did it take to get off the tube?

Hi Ann,
My husband had a modified radical neck dissection. Actually what they did was remove 30 lymph nodes on the left side of his neck. At the time of the operation we didn't know where the primary cancer was. Our surgeon had suspected that it was in the base of his tongue on the left side, because of the lymph nodes that had tested positive. He did some more biospies while he was in there and he actually found it where he thought it was. It is my understanding that base of tongue is somewhat down your neck and it's not a good place to operate. Our doc said he would have to basically take my husband's neck apart to get to the cancer and the side effects of the operation are not something you want to have to deal with. I believe this is different from the tongue and the floor of the mouth. His operation went well and the pathology report showed no cancer in any of the nodes they removed. He did not have a trach or feeding tube. We are going to start radiation very soon and it's my understanding that he may have to have a feeding tube depending on how he handles the radiation. Did you have radaition before?

i hd the neck desection as well good to read all this here as i had shoulder blhas too they had me in time creep up a wall with my hand its 6 weeks today and is better i do cleaning for folks so is good i started bk after a month of off time since the surgery. for me they found only a pin head in node so they a had remmoved the tumor frm the toungue and was a border line. im now at this point not needing treatment but am seen every month and a pet scan done in dec. im relived of the no treatment but wonder times gosh am i any safer then if i did get it thanks for yur talks it sure gives me more insight. rd

Hi everyone,
I don't know if anyone will read this because I haven't posted for a while. We went to NYC to find out about brachytherapy. Pretty neat trip, we were there on 9/11, his appointment was early on 9/12. He is not a candidate so we started chemo (cisplatin) and radiation on the 16th. He is supposed to have 6 chemo treatments and 35 radiation treatments. The radiation is regular not the imrt. First week done so far so good. He's tired but he can still eat and taste etc. He's got a sore throat now so I'm wondering how bad it will be for him by the time the end of treatment rolls around. We got the peg tube in the day before radiation started. I'm really thankful that he agreed to do it because of everything I'm reading. Does anyone know where I can get the biotene toothbrush and toothpaste?

DJ
The products you mention are available at your Pharmacy.
He has away to go , try and get him to bulk up as much as possible while he can. Make sure he drinks A LOT, if he cannot take it by mouth put his fluids in his PEG.

Red Doggie, am I correct in assuming you have not been offered any chemo/radiation? You say your lymph node only had a pin head of cancer but you had a tumour removed from your tongue?
Maybe I am just not reading this correctly...does anyone else think this does not sound right?
I realise she may not be the best typist but I am concerned.

Marica

Not many stores stock the biotene toothbrush, but you can order on the Laclede website at www.laclede.com You may find it satisfactory to start out with the softest standard toothbrush for awhile and then switch to the ultra soft biotene brush when the mucocitis gets bad.

djbattle,

With general field radiation, such as the kind you say your husband is getting, it's possible to feel reasonably OK for 2-3 weeks, but please be prepared for it to get significantly worse at some point beyond that. Side effects such as dry mouth, thrush, mouth sores and skin irritation can appear rather suddenly, so it's best to be ready just in case. Your medical team should be watching for early warning signs of any problems and giving you the necessary medications to help cope with them. Nutrition and hydration are absolutely essential to enable him to get through this phase, so it's really important to track his intake each day.

Cathy