Take heart. Mouths and throats will heal. I finished my chemo/radiation/Erbitux April 27 and was not able to chew or swallow without pain until the end of August. I had a feeding tube (my best friend Audrey!) and for almost five months I took at least 85% of my daily nutrition and water through the tube. I did drink and try to eat something soft such as pudding daily when I would use the Magic Mouthwash. I did not use pain patches at all and did not use the short-acting pain meds such as oxycodone before eating. Either of those may have been helpful, but I did not have much pain except when I tried to eat so did not explore those options. Fortunately I never had problems with Audrey, except for proud flesh in the last month. "She" was happy to have my vegetable concoctions, crushed meds and herbals mixed with almond milk or green tea, and my liquid flax and fish oil. I said good-bye to Audrey on September 19. She had been with me since January 20 at the time of my neck dissection.

I began in August to take more nutrition by mouth, mostly soups, scrambled eggs, Boost Plus, shakes, soft pasta. I still had some mouth and throat soreness but pushed on with eating and drinking, adding one "by mouth" small meal every few days. When I was taking 100% by mouth for two weeks my ENT surgeon removed the tube.

Nelie, I had a sore spot on my tongue that was painful for five months. It too was on the opposite side from my cancer. I had an old-fashioned gold crown that I suspect may have been the culprit and reacted to the radiation to cause the extra "burn" on my tongue. I still have irritation on the right edge of my tongue, probably from rubbing on a tooth. Manageable pain. I believe you will reach the point where the pain will not be so harsh that it will prevent you from eating and drinking more. Be patient with your body, as it will heal at its own pace. Send me an email if you would like.

Gosh, Zenda, thanks for that encouragement. It really helped. I am trying to eat somehting, even a small amount, by mouth every day now. But teh simplest things still seem beyond me! I tried purred squash last night, but (I gues because it does have a lot of fiber and didn't have any oil in it), when it got in my mouth it tunred into this dry lump of fiber almost immediately adn I had to spit most of it out

Tonight I am going to try some spinach souffle, moxed with extra olive oil first. If it passes the doesn't clog up on the roof of my mouth test, I can usually swallow small bites but can only do about 6 or 7 small bites before the throat area that is sire starts to hurt more. I am taking "Oxydose" before trying to eat but at a very small dose--I don't want to increase the dose just to be able to eat more right now.

If it's OK, I may email you if I keep having problems finding things that work. I really need some daily encouragement about this and my husband is pretty indifferent at this point. By the way, I finshed my rad/chemo, the end of the first week in June so I think I'm only a week and 1/2 behind you, although obviously more so in the eating department.

Nelie

ok-so I talked to my mother and she is set on waiting until after the trip for a consideration of the neck dissection....... I am not real happy with that decision.

Like Brian said "russian roulettete". But I can't force her to do it sooner. From the peg stand point too, if she waits then I assume she will most certainly need to keep her peg until she is recovered from surgery right? I would think a trip to Hawaii would be more fun with out a peg-another reason to get it taken care of first. Like Gail said too.....she many not even need the surgery. If that is the case-wouldn't it be better to go on the trip knowing that you are "really" done with treatment rather than anticipating what is yet to come???

My next plan is to get her into MD Anderson for a consult prior to the trip. Perhaps if they find the surgery necessary, they can convince her to do it sooner than later. Which leads me to my next question. How does this process start?

Do I need to wait until her scan (in about5-6 weeks) to contact MD And? Can we get the ball rolling for a consult prior to the results of the scan? Do I need her current oncology team to make a referral? I would like to start laying the ground work for this to happen. Maybe if I make is super easy for my Mom to go and have a consult she might just do it prior to the trip in January. If you have any tips on how to get the MD Anderson consult going please let me know.
Thanks
Tami

Most major cancer centers now allow self-referral, and MDACC is one of those. I recommend that you include her current treating staff in the loop for many reasons, not the least of which is common courtesy. They know in detail what's happened up to this point and have some intimate knowledge that will be helpful to any new team. They also have all the necessary records, scans, etc. Any doctor worth his salt isn't going to be offended by a patient asking for a second opinion or a change of venue. It happens often enough, and does not necessary mean a personal affront or lack of faith in the current team. The contact number at MDACC is 800-392-1611. They have several doctors who generally are the first screeners of new patients. From those docs you would get assigned to the appropriate treatment team. Since she is having all this done in the same state, that should mean few insurance hassles, but be prepared for some BS from the company that you will have to deal with. The MDACC web site can be entered through the resources page on the main OCF nav bar, and there is more information on their site that you may wish to review before you make the initial call.

Thanks Brian!
Tami

Hi
My Mom had her swallow test last week and she did great. Much to her surprise, the doctor said that she had 100% of her swallowing ability. This is the first piece of good news we have gotten since this cancer nite mare has begun. So her doctor recommend that she begin to eat soft foods. She did try eating some soft noodles and it hurt her throat so much. It has even caused her to start bleeding again. She has been coughing up small amounts of blood since this attempt. Could the tissue lining her throat still be this raw 2 months after IMRT/chemo? She is very discouraged.
Tami

Tami,
It sure can. I hacked up blood and stuff for quite a while during the early post tx. She may have to resort to the "pink magic". This is also the time the thrush commonly kicks in and that will cause throat pain as well. I was hitting the bottom at 2 months post Tx. It should start getting better from here. Early on you will notice progress in 3 week increments - i.e., verrry slow. Patience!