| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Well, the last couple of days I've managed to do some superior eating! Yesterday: a poached egg, banana, French Onion soup, baked squash with butter and maple syrup, today: dinner at my sister's of avocado soup and spinach/feta quiche with a little morsel of apple pie for dessert. And yes, I could taste all of it, especially the maple syrup. Still eating very small portions, but my stomach is being much more cooperative.
The challenge continues to be my sore tongue and I'm starting to get a little bit alarmed about a spot on the right side that really stings, especially by the end of the day. I have an appointment with my wonderful Nurse Practitioner on Tuesday and I'll have him take a look and in the meantime, I'm going to stop imagining the worst. I mean, there's no way this little spot is a new tumor, right? Its just a really stubborn bit of mucositis, right??
Ugh.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Mrgaret,
You're doing great! And you just reminded me that I have a spinach quiche in the freezer, so I just went and put it out to defrost.
I had a scare about 10 days ago that turned out to be just that, a scare. I had a blister appear on my tongue that bled when it broke. I was terrified! I was on my way to Gainesville that day for a CT scan (chest, not mouth) so I walked in to Dr Bill's office totally unexpected. He checked it out and said it didn't look like cancer, it didn't feel like cancer, and he was sure it wasn't cancer. I gave him a huge hug and cried like a baby. He was right, of course. it has since healed.
Just thought you might like to hear about it. Certainly get it checked out, and I know you'll worry, but I hope this helps you to not be too scared.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The only thing I have had at a restaurant is a baked sweet potato and it was delicious. My daughter got me to order it and said she would eat it if I didn't like it. I'm gald she ordered a steak. LOL That potato was as good as a steak that day. I had the Frech onion soup too. Mighty tasty for sure all but the cheese in it. That I couldn't handle at all.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Joined: May 2008 Posts: 551 | Jim,
I specifically asked for no cheese in the French Onion since I knew I wouldn't be able to handle it. I did have some roasted sweet potato wedges the other day and they tasted great, but hurt my tongue. This balancing act sure is exhausting!
Lani,
Thank you for sharing that with me. I'm a little bit on pins and needles until Tuesday, but I have a list of house projects to keep my mind occupied until then
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL I aure know what you are saying.. You have about the same meals as I do. I love the poached eggs tho. I make them and put them over white soft bread and over just done pancakes with butter on them. I didn't know the onion soup had cheese in in or I would have declined it too. I was gagging on it before I could get it out of my mouth. LOL I wonder what the people thought that were at the tables near us.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
When going out to eat, I have a few tips. If there isnt a soup that you can handle on the menu, ask for a kids menu. Alot of times there is mac and cheese on their menu. Sometimes you have to explain a bit more than "I have difficulty eating" to get a kids menu. Once the waitress hears that she usually is willing to help. I also sometimes just get a side dish of mashed potatoes or applesauce. I always also order chocolate milk. If something is unexpectadly spicier than I thought, it will soothe the burning tongue.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I ate off the kids menu for months on a take out basis because regular portions were just to big for my appetite.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Margaret,
It is great to hear you are eating so well.
That gives me hope that in a couple weeks I can get off this (bad word here) PEG tube.
Actually I think I am starting to see a very slight improvement (now beginning week four).
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Margaret,Don,
I am one year out and still have a "hot" spot on my tongue but it keeps getting a little better all the time. I too thought something was wrong but I guess it just got burnt more during the rads. I still have dry mouth issues but that too seems to be getting better incrementally. I use a biotene oral gel at night and have been sleeping 5 to 6 hours before waking with my tongue stuck to the top of my mouth. Well actually that hasn't happened lately! Hang in there it does get better. I also had a PEG tube and it did get infected but it served it's purpose also. I could play cards and eat at the same time!
Good Luck,
Bruce
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Bruce,
I am amazed that you got your tube out just three weeks after ending RT.
Here I am a month out with very little taste or appetite. Without the PEG I am sure I would be skin and bones!
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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