#43253 05-02-2004 04:27 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 | I still had to eat my sushi but I learned that the rice turns to glue if you don't keep the water and tea coming. When I was young, my mother made glue from rice and water for all of our school projects and every time I eat sushi, I think about that.
As a manly man, when I used to get up in the morning I always let out my morning expurgation (spit) but I tried to do it very quietly so as not to disturb the snoozing wife and gross her out. It just doesn't work now and I think I miss it!
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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#43254 05-02-2004 06:24 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Helen,
there's nothing to be scared of - it'll be a minor inconvenience for only a little while!
We all have different experiences anyway -yours may be indeed more like Karens and we had almost the same identical treatment.
I don't think I said that "there could be worse to come", but from the jist of most of the posts here (and the reality of it) it can always get worse before it gets better. Fearing it will not change the outcome. I did enough research prior to treatment to know pretty much what to expect. It was a double edged sword. It helped me to prepare ahead of time but conversely I wasn't exactly looking forward to the immediate either.
Take it one day at a time.
PS Some people LOVE Ensure and Boost -just not me!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#43255 05-02-2004 06:42 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Hey, Helen, you know if you don`t handle this next detour appropriately, there will be no new broomstick for you, let alone, a new jet propelled one..........and you know how unstable we become without a good flying broom, mine must need an overhaul, I may be unstable, but, get on it lady, and we`ll trip to the moon together.................WW of the North | | |
#43256 05-02-2004 07:13 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi All
Thanks.. don't know until next Friday what the big plan is.. only know it be good to know what they are planning... two holiday weekends here in the UK have messed up the Monday head and neck clinic so have been switched to another consultant.. but they are all good so no problem.. my current broomstick is powered by red wine.. so yep Dee will be good to be on the back of yours..
WW of the East...
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#43257 05-03-2004 02:22 AM | Joined: Feb 2004 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 43 | Hi Everyone, I have ten more rads and one chemo left. It's had it's ups and downs 2 cases of thrush and constant constipation. But I'm coming along. I'm one of those who like Boost Plus !!I add Instant Breakfast to it with soy milk and Yogurt. I try other things but I just can't get them down.It's a strange feeling for a professional chef to have no desire for food. I keep reading about food to see if I can connect but no luck..I'm not looking forward to chemo this week,every 2 hours sick with throwing up stomach acid. Any suggestions from anyone?? Thanks a million, Tom Roussell
SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.
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#43258 05-03-2004 08:51 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 | Hi Tom,
Join the club, I was sick enough that I knew deep down that hundreds were going through this without getting sick...based on statistics, that is. Drink lots of fluid to dilute the acid. Water down, water up...
Good luck and just remember, only one more chemo treatment and you have made it!
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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#43259 05-04-2004 07:10 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | The only thing I really enjoyed during that time was Starbucks rasberry frappachino's made with half and half and whip cream on top! Delicious, fattening and I didn't have to feel guilty bacause I lost 45 pounds and they wanted me to gain weight!! It has been 20 months since treatment and have gained most that weight back so I have to stay away from those treats! I know, not too healthy but it got me through radiation! :-) - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#43260 05-04-2004 07:38 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Hello,
During my treatments and for a while afterwards I could swallow nothing and depended totally on my PEG tube. As I gradually began eating, and even now I still live mainly on matzo ball and chicken soup from the deli, Boost Plus and wonderful chocolate milk shakes that I make at home with Homemade Vanilla Blue Bell Ice Cream from the little creamery in Brenham, Texas. Apparently Blue Bell is sold in 18 states. The other day Dreyer's Grand was on sale so I bought some and the shake did not taste nearly as good as with Blue Bell. The ones I make at home even taste better than Baskin Robbins and Hagen Daaz at the store. Go figure. So many things that I used to love, like cokes, just have no appeal anymore. However certain desserts, like creme broulee from a nice restaurant taste as good as ever!
Now I can eat oatmeal and Rice Krispies with a banana, but it took a while to get to that point.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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