#11911 09-01-2007 05:10 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Way to go Billy!
You're making progress !
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | |
#11912 09-01-2007 07:13 PM | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | You need to do the throat exercises religiously. Times 2. My throat muscles are now, I believe, strong enough to handle any obstruction. It really is amazing how our bodies learn to compensate.
One huge asset when eating is water. Drink alot with meals, beware of the dry foods - and yes potatoes definitely is one of them, and most of all - take your time eating. Others will eat much much quicker than you will, just take your time.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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#11913 09-02-2007 04:32 AM | Joined: Dec 2006 Posts: 9 Member | | Member
Joined: Dec 2006 Posts: 9 | Billy,
Great news, you are well on your way. Your strength and endurance increases with your gradual return to normal eating habits. Take it slow, dine leisurely. Your going to have to work on relaxing while you eat all over again, no anxiety or what ifs. I sincerely doubt that you are over hydrating. Your internal systems are trying to return to 'normal' function. You are not your Uncle, you are Billy. As you see it takes time, you need to allow for that. Your wife is correct, strong faith will provide, needs will be met. Up until now you've done the providing and you will again, in time. It's hard to allow yourself to go from the giver to the taker, but right now it has to be. Soon you'll get back to being the giver that you are. You are progressing very well friend, keep 'er rolling.
Frank
SCC, dx July 2006,Stage II,front third of tongue, surgery Oct 16, 2006, radical neck dissection, 20 lymph nodes removed right side negative, tongue resection,IMRT Dec.2006-Jan.2007 45X,T2N0M0, no chemo. Roswell Park Cancer Institute Buffalo, NY.
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#11914 09-02-2007 03:30 PM | Joined: May 2007 Posts: 231 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: May 2007 Posts: 231 | I do need to do the throat exercises more than I do but I will tell you that I do them more than I used to. I was able to get 3/4 of a salisbury steak down tonight. It took me quite awhile but I got it. I also took some mashed potatos and layed the gravy to em. They went down pretty easy. I know all of this will take time and I know that all of this work will be worth it in the end. I just want to go back to work so bad that it drives me up the wall. I have never been a patient person and now the good Lord is teaching me patience. I really appreciate all of the support that I have here and I am so thankful for each and every one of you.
Billy
Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
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#11915 09-06-2007 04:49 PM | Joined: Jun 2007 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2007 Posts: 32 | Good news, Billy. Keep on keeping on. each day gets better. You have lots of great support here!!!
Donna; Age 50, dx w/ Stage 2, muco epidermoid carcinoma 4/07, maxiolectomy of the upper right palate 6/07, clear margins, no radiation or chemotherapy, close follow-ups.
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#11916 09-07-2007 11:03 AM | Joined: Dec 2006 Posts: 2 Member | | Member
Joined: Dec 2006 Posts: 2 | Hey Billy, Sounds like you are making great progress. Softly scrambled eggs are good and they taste pretty good plopped on top of soft, non-crusty buttered bread. Let's face it, artisan loaves are a ways off.  Pancakes with lots of butter and syrup were one of my mainstays that have yet to be mentioned--small bites are the key to success. Best wishes, Kathy
SCC Stage IV, base and rear of tongue. Ressected 2/3 of tongue 3/14/91, flap implant at UCLA Medical Center. 36 radiation treatments and all clear since then.
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#11917 09-07-2007 11:13 AM | Joined: May 2007 Posts: 231 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: May 2007 Posts: 231 | I think I have some swelling in my throat caused by the fluid buildup in my face and neck from lymphedema. I am a little apprehensive about eating much right now. I do try to eat something everyday so as to keep those muscles at least as strong as they are right now. Thanks for the help everyone.
Billy
Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
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#11918 09-07-2007 11:42 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Billy,
As a general rule, your weight divided by 2 is the minimum ounces of water to drink per day.
Did you see the cookbook on the website for foods to make for swallowing difficulties? I hope it is still there, anyway.
Wow, I looked and there are several. Here's the one I had in mind:
"Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing (Paperback)"
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#11919 09-13-2007 07:55 AM | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Billy,
I had second thoughts about eating because I had severe swelling under my neck and chin from dissection. I asked my doctor (demanded) to have a swallow test by a speech pathologist and come to find out, I didn't have a problem. It was all up in my head and emotions. It still took a while to swallow but just knowing my throat was ok made me feel a whole heck of a lot braver.
Have you had that test yet?
Take care
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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#11920 09-13-2007 08:07 AM | Joined: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Hi Billy-
If you're still looking for food ideas, I ate alot of canned peaches after treatment. They are slippery so they slide down well on their own. I still keep a can in the car for emergencies! Other canned fruits(pears, cocktails) didn't work as well. You could cut them into little pieces if you want.
Melissa
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
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