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#55051 06-10-2004 05:08 PM
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minniea Offline OP
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This week I have had remarkable improvement in my saliva and overall eating. Wondering if anyone experienced such changes at approx. one year out from treatment? I have been eating well for a few months now, but eating with lots of effort. Now, I am finding myself eating without thinking about it, enjoying it. I even ate a small bag of chips last night, I was amazed.
Not complaining..................just wondering!


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#55052 06-10-2004 06:43 PM
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Good job, Minnie!!! What kind of chips?

I was eating well until my neck dissection last week... Now I'm waiting for my sore throat to go down...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#55053 06-10-2004 06:45 PM
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Minnie, at six months I was so satisfied with how things had worked out that I just stopped thinking about it. Then at one year, I suddenly realized that I was in even better shape. I think what you are experiencing is pretty normal. We get caught up in getting back to real life and the focus shifts from how we are feeling to other things. And for the record, I am eating pretzels -- with only upper teeth, which is a neat trick (grin).

#55054 06-10-2004 07:18 PM
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Minnie,

I didn't have any surgery and the saliva doesn't flow too well but I can eat about everything. I eat potato chips and they turn to a little wad of dry stuff that resembles mashed potatoes. A little water and it goes down fine! I quit taking Salagen and don't notice much difference. I had my 8 month checkup this past Tuesday.

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
#55055 06-10-2004 07:51 PM
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Hi Minnie,
As I recall it was about a year out when I could eat things like Cheetos and bagels with minimal amounts of water. Of course salty foods cause me problems down the road. I am very fortunate to have had IMRT, at almost 15 months post Tx I have a pretty fair saliva recovery and it continues to improve. I pretty much eat anything I want now.


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)
#55056 06-11-2004 01:38 AM
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Hey Minnie,

Just to show how different we all are, I can't handle kettle style potato chips. They are just too hard for me. Weird, huh? Other chips are ok, just those kettle type ones hurt as I try to manipulate them around my mouth. One of my favorite restaurants, Panera Bread, gives this type of chip with their sandwiches. I realized this week I didn't want to give up my chips to whomever I was having lunch with and asked for extra pickles. Perfect! laugh

Sincerely,
Lisa


Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
#55057 06-11-2004 05:25 AM
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minniea Offline OP
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Eric..........it was just plain Lay's potato chips. I have always loved chips and dip, would eat them every night after I got all the kids in bed. Food has always been a comfort for me and I looked forward to a night snack after a long day. I just tried some chips with pimento dip, my 20 year old daughter, Megan, bought if for me this morning when she heard I had eaten the chips, lol. It tasted incredible! I will be giving my favorite, french onion dip, a try tonight. I think I may even try an egg salad sandwich this weekend.
Lisa, I have a friend here in the "cheer world" that had stage one tongue a little over 2 years ago and she is doing fantastic. She only had surgery, but no replacment of what they took from the tongue. No radiation. Her tongue is a little numb and she will bite it every so often and it will bleed, but other then that she is doing awesome. Took her a bit to get her speech back to normal but you can't tell now. She's only a couple years older then me.
Joanna, I hope when I finally get the rest of this implant stuff done that I can eat as well as you are!
Take care everyone,
Minnie
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#55058 06-11-2004 11:53 AM
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Well done, Minnie.

You have such a positive attitude. My mouth is too dry for plain potato chips but dip with them is a good idea.

And going for a sandwich!! Enjoy.

From Helen, with love cool


RHTonsil SCC Stage IV tx completed May 03
#55059 06-11-2004 03:37 PM
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Hey Minnie,
Such good "eating" news. Dan is just starting to eat more after getting his PEG removed this week. It's such a long, slow process but I see improvement already. I look forward to him eating as good as you are!!
Take care and God Bless,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
#55060 06-11-2004 04:11 PM
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minniea Offline OP
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Helen, even though the chips are dry, if I chew just a little slower then normal it works really well. Another trick I use with meat is to smother it in cheese. I soak a ribeye in italian dressing for a few hours, my husband cooks it on the grill, then I put some colby and montery jack on top. It adds delicious flavor and makes the meat more moist. I've been eating tortilla chips for a few months now, smothered in montery jack cheese. It amazed me how easily I could eat them with the cheese. The only thing I haven't figured out a trick for yet is plain old crackers. I used to eat a package of premium saltine crackers a day, I love them and they always kept my stomach feeling good. The only way I can eat them now is by dipping them in soup but I sure do miss the full flavor of them.
Here is a casserole dish I found I could eat better then most things when I started eating after radiation.
1 bag of frozen mixed veggies (broccoli, carrots and cauliflower)
1/2 cup of sour cream
1 can of cream of mushroom soup
1 small can of Durkee French onions
1 8 ounce bag of shredded swiss cheese
Mix the veggies, soup, sour cream, 1/2 the can of french onion, 1/2 the cheese in a casserole dish.
Cover and heat at 350 for 30 minutes. Take out and add the leftover french onions to the top and then cover whole thing with remaining cheese. Put back in oven for ten minutes without cover. This casserole is moist, easy to chew and delicious.................all my kids (especially my youngest, Sam, who is 10) beg me to make it a number of times a week.........imagine kids wanting those three veggies, lol.
Everyone have a super weekend. We're having a Hawaiian Lua tomorrow for our daughter that just turned 12 on Monday..........they're calling for some severe thunderstorms so we are praying it won't be a Tropical Storm party!


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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