Hey everybody,

My mom has a couple questions she wanted me to run by you all. Her mouth hurts her and this concerns her because when the tumors were there they hurt. She doesn't feel anything in there (at least thats what she tells me) but her mouth obviously feels different because of all the surgery and radiation. She says it tends to hurt more after she has eaten or been talking for a while. She is now almost 11 weeks post radiation did anybody's mouth still hurt at this point? She has to go back to work starting June 1st and she has to be on the phone because she does contracts and purchasing for a research lab so it requires a lot of talking. She can already eat everything even salad. I think shes doing great!

Another problem she is having is the ability to gain weight. She is 5'8 and still weighs 125 and for her bone structure I think she needs at least 10 pounds to look healthy. How long until you think she will gain any weight? Even when she eats and eats its as though her metabolism has changed?

She also has a little difficulty swallowing at times and this scares her too. Sometimes she chokes on her food. Is this normal at this stage?

Floride trays. She is still using them everyday. I think this is excessive. I believe her dentist told her she would have to do it everyday for the rest of her life? This sounds crazy to me.

Your thoughts and advice will be greatly appreciated as always.......

Dani

Dani,

The effects of radiation take a long time to wear off. My experience was that when I gradually started to cut back on painkilling medication after the end of treatment, I periodically became aware of pains at or near the site of the tumor that were worrisome, but turned out to be nothing abnormal. Also, as I began using some of the muscles in my neck that had atrophied during radiation, that seemed to cause pain as well.

Over the 15 years since my treatment, I've had short-term irritations (maybe lasting a week or two) around the same site, but they've always gone away. I have regular head/neck exams with my oncologist and oral surgeon that haven't turned up anything problematic in the meantime.

I still sometimes choke on food (even after 15 years!), usually as a function of persistent dry mouth problems. While I take Salagen regularly to boost my saliva -- and it does help a bit -- I often have to drink extra liquids with certain foods to help them go down properly.

It sounds like your mom is doing well with eating in general, which is a good sign. It can take quite awhile for the body to overcome the trauma of surgery and/or radiation and start to get back to a normal weight (especially if the thyroid has also been affected).

Try to help her keep her spirits up -- and please come back with progress reports.

Cathy

Dani, I will address the issues with which I am familiar. I ate like a linebacker for 18 months, at which point it was like a switch was flipped and I began to gain weight. If she feels okay, tell her not to worry, and that her metabolism will eventually kick in. I did have my thyroid checked, but it was okay. I think this is just another after effect of rad. With regard to the trays, several of the dentists I consulted told me that the trays would need to be used every single day forever. And please tell your mom that long after the cancer has faded into the past, and she is going about her life as usual, she will suddenly realize that something is easier or she feels better. This is a very, very long process, but there is much joy in having come through it. Good luck to you both.

Dani,

Here is a website a guy put together and he is about 7 years post treatment.

http://www.bdssite.com/

I posted this under another thread but I came across this site right around or after radiation. He has a cool story that is great to read and he posted the xrays from his throat that explains why he can't swallow even years later.

I had a pretty sore mouth and could not gain weight. I lost about 70 lbs. I battled thrush nonstop and candida yeast (cause of thrush) can cause loss of weight or lack of gain if it becomes systemic. Miraculously, I gained 12 lbs in one week, after losing from August 2003-March 5, 2004. Since March I have gained a total of 20 lbs and it is holding.

It takes time but as my nurse told me, suddenly you turn the corner and everything changes. I have turned the corner and your mother will, too!

Ed

Dani,
My hubby's mouth doesn't really hurt much, but he has very much trouble trying to get food down. He had about 1/3 tongue removal, mod. neck dissections, neck tumor, radical neck dissection, chemo/rad. He has a bit of trouble with pronunciation of some letters, bs, ds, and he has to think before talking more. He is about 9 weeks post treatment and has a PEG tube. He has just started drinking some water, gatorade and tiny bits of food by mouth. Every bite is a thought out process and he coughs and chokes a lot. It seems to be getting a little better very, very slowly. It's all just a much longer process then expected, but if the cancer stays away, everything else is minor. Dan couldn't use the flouride trays we had made because it gagged him, so we thought it was a $400 waste. But Brian and some others had some good information and we would like to avoid bad dental problems down the road, so Dan trys to just stick them in for 10 minutes every nite or every other nite. As much as can be possible...I believe Brian Hill is very familiar with the dental part of all of this and has said numerous times how important those fluriode treatments are for those who have went to rad and even chemo.

Take care and God Bless you!
Debbie

Hi Dani,
Your mom sounds like she is on about the same schedule as me, if not a bit ahead. I was still using my feeding tube 10 weeks after radiation ended. My mouth was so sore at 10 weeks out that I couldn't really eat anything, and I had pain in lots of different places.
At 10 months out, I have been eating by mouth for quite a few months now and every month I see small improvement. But, my mouth is still sore, I still get sores on my tongue that come and go, I gag at times while eating (athough not near as much as I did just one month ago) and though I don't choke like I used to it still happens.
My mouth will never feel "normal" again, that I have accepted. But it feels closer to normal as the weeks go by. I have a feeling that as time goes on I will forget what "normal" felt like and this NEW feeling WILL BE normal!
I started gaining weight after a few months and am now back to my pre-surgery weight. But, I lost less then 20 pounds throughout the whole ordeal.
Tell your mom that each week she will notice something that is better, something that feels closer to normal or simply feels no pain. The only real pain I get now is when I yawn, boy that hurts.
Please tell your mom that she is still in the beginning stages of recovering. If she's doing this well now then she will soon reach a point where she is happy with how her mouth feels.
Take care,
Minnie