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Old 08-30-2009, 10:50 PM   #241
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Keep going, ratface!

about your jaw - can you chew gum? that might help even if you are drinking/half-drinking most of your food.

If no gum allowed:

I used to work with a guy who chewed rubberbands as a nervous habit - For medical reasons, I'd let you do it without shrieking and running from the room. (For medical reasons only, ok? )

good luck,
mew
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Old 08-30-2009, 11:40 PM   #242
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...the game plan from this point forward is to finish the chemo and radiation. I'm halfway there. 4 weeks down.
Yay! Halfway there sounds encouraging, at least from where I'm sitting. I hope the second half of treatment goes swiftly and you can put all this behind you.
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Old 08-30-2009, 11:46 PM   #243
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I wish I knew the perfect doctor for you, but I don't. I assume you would want someone in the area where you live. Perhaps investigating surgeons in your area will give you conviction...adding strength to your resolve.

A heartfelt hug from TX to you....
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Old 08-30-2009, 11:51 PM   #244
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Ratty, don't cross the need-a-surgeon bridge until you come to it--with God's grace you might not need to even come near that bridge.

I'm glad you're finding things to eat and keeping that jaw working out, too.
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Old 08-31-2009, 08:20 AM   #245
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The neck disection is fairly common practice with head and neck cancer. There are also variations of it as to how much is disected and disturbed. My ENT said it was routinely done on everyone years ago before beginning the radiation and chemo. He also said they used to pull all of your teeth. My ENT has been the only one taking a wait and see attitude which I commend comming from the surgeon. The RAD Oncologist and Chemo Oncologist keep bringing it up as a posibilty down the line. I have a lot of time on my hands and it's a good oppurtunity to research alternatives and drive myself insane. One of the most recurrent themes I keep hearing from cancer patients is to take a very active role in your own treatment options as there is so much variation in practice and you only really get one shot at it. Since My cancer is already in the Lymphatic system and we know it's traveling in the "stream", just not how far down stream it's gotten? The theory here is that my neck has two sides and only one side to date is under control of the beast. We simply remove all the water from one fork in the stream and use the other side. It is not uncommon to get 30-50 nodes removed from your neck and have them all come back negative. I've committed myself to the initial treatment at this facility but will travel anywhere in the country for a good surgeon if need be. I want someone who has done a few of these, it involves cutting nerves and removing the jugular vein on that side.

Actually MD Anderson in Texas is the world renowned Head and Neck Facility in the world. Sloan Kettering is also top notch. One day you clean out the gutters and the next you plan on having your tongue removed.
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Old 08-31-2009, 08:52 AM   #246
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God Bless you man. I don't have any advice other than to say just follow your doc's plan. Take one step at a time. I know you want to plan and look at every possible turn you may have to take, but don't let it drive you nuts.

Hang in there and think good thoughts.
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Old 08-31-2009, 11:21 AM   #247
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Sending another {{{HUG}}}
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Old 09-04-2009, 07:27 AM   #248
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And week number five comes to an end. Swallowing has become very painful but really no other complaints. The neck radiation burns are also beginning to be bothersome. Because of the holiday weekend I get to skip radiation on Monday and then my third round of cisplatin a week from today. Doctors all seem very pleased with the progress to date. Everyone have a great and safe holiday.
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Old 09-04-2009, 07:50 AM   #249
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Ratface, thanks for keeping us in the loop on your progress. Five weeks of treatments behind you and the doctors are pleased with your progress. That must sound pretty good to you.

All the best.
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Old 09-04-2009, 08:09 AM   #250
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Ratface, Keep up the good work! Sounds like you are doing all the right things. All the prayers and support from your friends on this board can't hurt either. Soon all this will be behind you!

Your courage and perseverance is inspiring!

Hang in there!
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Old 09-04-2009, 09:36 AM   #251
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And week number five comes to an end. Swallowing has become very painful but really no other complaints. The neck radiation burns are also beginning to be bothersome. Because of the holiday weekend I get to skip radiation on Monday and then my third round of cisplatin a week from today. Doctors all seem very pleased with the progress to date. Everyone have a great and safe holiday.
That is wonderful news!! Five weeks of this behind you already, and good progress too. Enjoy your holiday weekend.
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Old 09-04-2009, 12:50 PM   #252
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Keep going ratty, only 3 weeks of treatment to go, all the very best from da' bayou's
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Old 09-04-2009, 12:58 PM   #253
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Hang in there ratty! We're all pulling for you!
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Old 09-04-2009, 03:57 PM   #254
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You say swallowing is painful for you. I don't know how to help in that respect, but I do have a suggestion if you have mouth abrasions. Ask your doctor about Chlorhexidine. My dentist gives me a bottle of this on occasion...the strength is .12%. It works miracles for me.

I hope you have a great weekend too....
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Old 09-04-2009, 05:25 PM   #255
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Glad the doc is happy with your progress. I'm sorry about the swallowing problem. Hopefully that will ease up soon.
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Old 09-04-2009, 05:29 PM   #256
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Ratty, I hope after the long weekend and the Monday radiation holiday the swallowing problem eases up a little. Is your son coming home from school for the weekend? Bet you miss him!
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Old 09-04-2009, 07:24 PM   #257
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Ratface, it sounds like you are going through so much, we all feel for you here.

I have no idea what your stomach will tolerate - but if it's just about swallowing - then I know most foods do go into a blender! My brother in law had his jaw wired shut and my sister would blend everything. He was so frustrated with soup that she resorted to throwing a pizza in the blender (w/ some liquid) and he was so happy!

Also, there are tons of healthy energy boosting smoothies you could try - even just whatever combo of frozen berries you like (raspberries, blue, black, etc) a splash of juice (apple, orange, cranberry - whatever you have), yogurt and if you're ambitious about nutrition throw in a handful of spinach...and blend!

my little ones are also into jarred/canned pears (which are really soft) and those are good for getting the motion back in the lower regions too...
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Old 09-04-2009, 07:31 PM   #258
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Sending you lots of hugs and much love.....you are doing awesome
I hope you have a wonderful weekend and enjoy your family
Eat lots of ice-cream.....that should help with the swallowing!
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Old 09-04-2009, 07:40 PM   #259
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Ratface ,
Have you been taking ensure ? It will help with your nutrition . You are doing a great job .
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Old 09-04-2009, 09:49 PM   #260
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I have been drinking ensure. I also have been eating los of ice cream and shakes but I think that is over. The cold is now very painful. Today I was able to get a bowl of soup down that was in the blender first but only by following it with sips of water. I think its time to acceapt the fact that I must start using this feeding tube that is embedded in my stomach. I'll tyry pushing some ensure through it tomorrow. Perhaps the 3 days off from the radiation will help also. Canned pears sounds really good though as well as canned peaches. Anything citrius would send me screaming. Appreciate all the encouragement.
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