Jamie, my doctor's, particularly the rad doctor, told me the side effects can last up to 2 years. That the full use of all of my faculties, taste, swallowing, sore throat, deep voice, etc, could take up to 2 years to repair themselves as much as they will ever be able to do. So tell mom not to worry too much as she is rounding the corner and on her way to getting well. Will pray for her comfort and improvement soon.

Jamie,
It sounds to me like your Mom is about to turn the corner. Remember the old saying that it's always darkest just before the dawn.

In my own case, the side effects of radiation peaked at about 8 weeks after the last exposure, then things started improving rather quickly. The burns on my neck (and in my throat) started healing up, which led to increased comfort, and improved swallowing. The muccousitis cleared up, the exercises that the speech/swallowing therapist gave me started to take effect, and overall my quality of life started to improve.
Telll her to hang in ther, improvement is just around the corner.
You'll both be in my prayers

Chuck

Jamie,

I am glad to hear you are busy, provided it is some time for you to catch up on things that were pushed aside for a while now. A real paradox of the treatment is that in order to eat and swallow you have to eat and swallow but you can't. It really makes it difficult to get back into the swallowing thing because the body has to learn to swallow in spite of the damage to all the muscles used for swallowing. Practice will make it better. It hurts at first but the more you swallow the easier it gets. I could not swallow ice and still after over a year it seems to stop at some ledge about 1/3 of the way down and then the cold just burns. I can drink milk shakes but eating ice cream gets painful. I can feel the lump where it stops but can't do much about it. I have just eaten my 3rd meal today without water. I had blueberry pancakes and bacon with water afterwards. It is hard for me to believe that 13 months after the end of radiation this is the progress that has been made.

Get your mother to try and swallow something. I started with milk and moved up to spaghetti noodles and then with sauce. Water was actually more difficult for me than anything else. Work the muscles. There is a great cookbook for people with swallowing issues and it explains all the muscles involved. It makes sense after the damage from radiation one would struggle with swallowing.

I hope your mom turns the corner soon.

Ed

For some reason water is more difficult to swallow than thick/semi fluid.In my case, I could take congee throughout and after treatment but when it came to soup, it took me quite a while drinking it without choking. Ed, I understand how you feel when discovering that you can eat without help from water. For a Chinese meal that usually goes with rice and a lot of veggies, this experience can really happen even earlier than 13 months post treatment since the rice is soft and veggies especially melon type can help to get your food down more easily. Depending on what I have for dinner, sometimes I don't need any sip of water for the whole meal but with dry food like meat or chicken, every bite goes with a small sip of water. So naturally, my diet now is directed to more veggies and less meat, which I think is much healthier. Eating or swallowing isn't a problem to me now-- 3 years post treatment. So things can get better slowly and gradually.

Karen.

Jamie-

Please ask her doctor if you can get a referral for a speech pathologist and/or physical therapy. They can help her not only with gentle/lymphatic massage like Mark suggested but they will help her learn to retrain/adjust to her atrophied or damaged muscles by compensating with different ones. The dysphasia (swallowing difficulties) tends to increase some of the anxiety that goes with just the recovery process (I work with patients that often have difficulty swallowing and sometimes they get full blown panic attacks). Like there aren't enough different things to adjust to after treatment then have to struggle with the difficulty of "if I swallow - where's it going to go?"

Karen? Did you have issues with the rice? I seem to recall Ed having a tough time and more than once having it go one of three places (the nose, the trachea or the esophagus). Scared me more than once. He still can't talk while sitting at the table eating. Something about it seems to throw the muscles off and work the way they're supposed to with the opposite function/intent. ARGH! Fretful for us almost as much as him!

Hang in there Jamie! Its kind of neat that your mom asked you to ask the real experts (the cancer surviors themselves)! Wish her well for me and tell her I am so pleased at her progress to date.

Susan

Hi Susan, it depends on how much water you add to the rice when cooking. If it is soft, there isn't problem especially if I take a mouthful of rice with other food like melon or soft veggies. If the rice is a bit 'hard', I may need to take some sauce or soup to get it down. I did have problem when I was still fresh from radiation and so I had taken congee for almost 6 months. When I dine out now in Chinese restaurants and if they have both rice and congee, I still order congee. Easier to take.

Karen.

Hi, as you can see i havent been here for some time. everything was looking good and the doctors all told my mom that it looked like they had gotton everything from the chemo and radiation so they didnt need to do the neck dissection. well, yesterday she got a call with results from the four month followup pet scan and the doctor says there is something that looks suspicious. omg here we go again. so any ideas from anyone? they have to do some more tests but would like to schedule surgery asap for the dissection. she is worried about getting back to work. (h yeah a side note, from the radiation treatment, her esophugas(?) had shrunk up to the size of a pin hole, so we have gone in and had about 6 dialations in the past two months and now it is the size of a nickel and she is starting to be able to eat some soft foods but still has the feeding tube.)has anyone out there,or know anyone who has had a set back this quick? is this something that sounds really bad? she is just getting somewhat back to normal and now we dont know what is going to happen. thanks all jamie

jbentonwolfe, welcome back. Sorry your mom has had this problem raise its ugly head again. Some of the members who have had recurrances I'm sure will comment. I'm one of the lucky one's, so far, and have not had any additional issues. Please let her know she's in my thoughts and I pray this isn't a recurrance, just a suspicious shadow caused by the rad. Extra tests will tell the story. God bless.

Hello again Jamie, scans can have false positives, in fact it is fairly common with PET scans because many things besides cancer can show up (infections for instance). Several people have had that happen. I'll hope for the best.

Hello Jamie; Please don't worry in advance. Suspicious cells are just that until they are positively identified. I had some "suspicious cells" that turned out to be scar tissue.
That being said, I did have a recurrance fairly soon after my rad Tx which necessitated an extended neck dissection two months ago. My prognosis is poor (the docs say) but until someone decides to pay me for time spent worrying, I think I'll just enjoy this particular time of being cancer free, and deal with the other stuff if and when it comes along.
I wish you peace and calmness as you continue to be such a wonderful caring supporter to your Mom. She is truly blessed to have you.
All the best,
Fran