Just an update from Texas....3 rounds down, 27 left
Wednesday, the first day was hell. As a firefighter, I have spent ALOT of time in various masks, and enviroments, but experienced my first bout of claustophobia. They had to let me up, get a drink of water, and try it again. Found out my obtorator was blocking airway when lying flat, and trying to breath with mouth shut was almost too much. Got thru it day one.
Went to my dentist and we ground off alot to open airway when lying flat. Had staff at oncology make me a "blow hole" at nose and mouth, and I now take a ClonazPAM 0.5mg 1 hour before, and chase it with Lorazepam 0.5mg 15 minutes before treatment. The results were magical, and Friday I lost count of each exposure during treatment. (I think I dozed off). If anyone is struggling with getting locked down in the mask, try what I did, it made ALL the difference in the world! I start week 2 and treatments 4-8 this week. Now just waiting for the side effects to show up. Hope each one of us enjoys another weekend of God's grace! Keeping an open mind on how to make things better!

Wow, Devin - I'm so glad you were able to make things better and that you got the good results you did! And how great your dentist was able to help you to open an airway to make you more comfortable inside your mask. I've been away from this forum for a while having just recently come back again and I continue to marvel at how courageous people are and how they find ways to make things better. It just goes to show that - there is always something you can do about whatever situation you are in. I'm sure your post will be a source of encouragement for others going thru treatment. Hope the rest of your treatments continue to go as well. Keep giving us updates.

Devin,
I am really impressed with the way you are handling your treatments so far. I never had much of a problem with the mask, but other people do and unexpected things jump up and bite us, like your airway blockage. You set an example of how we have to deal with adversities of oc treatment by taking action. I suspect that through your background as a firefighter you have encountered situations that required improvision and endurance. I am also very pleased but not surprised that your fellow firefighters are rallying to you side with support. This support will mean more than you imagine in the weeks to come. I like what I read from your postings and I know that you are going to do fine. Take it day by day and keep us informed as you feel up to it.

Hello all! Just wanted to give an update and try and get some feedback. We are on rad #14 on Tues. 16 more to go!! My sister has become alittle depressed which she talked to the social worker about in private. I am not to sure what that outcome was. She has about 2 sores on the inside of her lower lip. About 3 sores on her tongue. The mucus is getting alittle thicker then normal when she eats certain things.
Today she woke up with her voice very raspy which got her nervous( she thinks the radiation is directed on her voice box now and not where it is suppose to be). She is worried that she will not have a voice now throughout the rest of her treatment. So needless to say today was a difficult day with her emotions. She was saying how she wants to quit the treatment and things like that. I didn't argue with her I just let her go and rest and hope tomorrow is a better day.
She has been good with keeping up with the things she should be like rinses, floride trays, creams, eating and walking. The dr's gave her a mouth rinse with alcohol in it that really bothered her so she is now doing the baking soda and water and rotating with the biotin.
I was wondering if anyone else lost their voice and what they did to help it. Also how long did it last?
Thanks for any help you guys can offer. You have all been a true blessing for me and have helped me through so much. I do not know how strong I could have been without your support. Hope everyone has a great holiday weekend.

Hi Susan - Seems like most people do get depressed during treatment. It's a pretty tough road to get through. My son was on depression meds and there were still days when he was really down. As a CG it is dfficult to know when to be gentle and when to be firm. Certainly, anything your sister is concerned about should be brought up with her doctor just to ease her mind, and yours too. My son resorted to an improvised form of sign language with me and "saved" his raspy voice for when people came to visit. But the voice did come back and he's fine, now. Re the mouth rinses, there are several different types. My son used the Magic Mouth Wash and several others and it seemed that they would work for a while and then not so well he would come back to one of the previous ones he had used that worked again! Everybody reacts differently so if something doesn't work, it pays to try something else.

What doctor would prescribe an alcohol based mouthwash for an oral cancer patient, much less someone in the throws of Tx? That's got to be one of the dumbest things I've read since I've been on this site!!!!

OK back to reality....first off I know you have read many times that each of us can react differently to this Tx so what she will encounter and deal with is a product of many many factors. I didn't loose my voice until the very late stages of Tx and I only lost it for about a week. I didn't get depressed ( maybe to stupid to ) so I can only add that some have taken feel good pills during and post Tx. IMO anything that helps one get thru this Tx should be tried sepecially if she has thoughts of guitting all together as that surely would mean death.

Keep her doing everything else and encourage her to maybe visit this site. Seeing that she is reacting just like most of us during Tx and therefore feeling normal goes a long way to balance our mental fears which can lead to depression.

Hey David. I remember u saying that you did the radiation without a peg. Do you have any suggestions on how she can eat or what she could try. It seems like that alcohol mouthwash she used for a day made her sores extremly bad in her mouth. Her lips and tongue are swollen and really red. She has sores everywhere in her mouth now. Anything she puts in her mouth hurts. Her eating has declined rapidly. She is seeing the dr tomorrow but are these side effects normal or alittle extreme? She really doesn't want to continue at this point with radiation and I am at a lose for words of encouragement. Only because I do not know if these side effect are normal. Any information would be so helpful. She is almost done. She has 13 treatments left. Oh and what do you think if the dr's give her a week off from radiation? They were contemplating doing that. It seems to me that on her off days is when the sores get worse. Again thanks!! Hope you have a good day.

This is about the point at which the sores in my mouth, and the morphine I was taking for them really knocked the wind out of me. I was ready to give up. What the is experiencing is normal. The alcohol mouthwash didn't help things, but the impact of that probably hasn't made things worse in the long run. I would opt for not stopping treatment. While it is done in extreme cases, in mine they opted to just up my pain meds, and of course I was already eating on a PEG, so nutrition was being taken care of without additional issues with putting food in my mouth. Chilled canned peaches.... that was all I could do. Two weeks will seem like an eternity to her, but most people getting high dose radiation have a hard path in the last two weeks. This is the point at which my wife became the strength that I did not have, and only her pushing me one day at a time, kept me in treatment.

Thanks so much for the reassurance Brian! I just went from being discourage on my last post to determined on this post..LOL! I believe they are not going to give her the last Erbitux. Starting tomorrow I am going to take over to main caregiver. My sisters husband who is now the main lets her get away with things as far as not doing rinses and not drinking her shake. I am going to try and get her into a routine for everything she has to do for the next 2.5 weeks. I was also wondering if there is like a protein powder that dissolves in water. Almost like benifiber does? She can handle water pretty well so maybe I can find something for her to take that way. Off th GNC I go tomorrow.. I will post what the Dr's say..

Susan, my husband's voice was quite raspy. Sounded like he didn't have one for a bit. Truthfully, it's so back to normal that I forgot about that until I just read your post. He also (like I'm betting a bunch of folks) got some nasty sores from the treatment. They also healed but that took awhile. The cans of carnation560 (he had a prescription version that insurance paid for) were invaluable. For awhile it was all he could get down.

You may want to speak to the social worker to be sure she has a good sense of how your sister is feeling. Sometimes,I get very valuable info from the families that really do help me treat the patient better.
Keep in mind though, that it is also so normal to be discouraged and want to stop when you feel so crappy. Just as long as she keeps going...
And,of course, do what you can for yourself. It's so hard to see and hear someone you love so down in the dumps.