| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I drove to a soft serve Ice cream this afternoon thinking I could handler some of that good stuff. LOL Oh yea. I brought a cup full home to try. I have had nothing in my mouth since last Oct but had to try because it looked so good. Hell. ZI put a little back in my mouth as far as I could. Geez, It ran out of my mouth, down my chin, down my shirt and burned my tongue like fire. Sure glad I had a towel close by. I guess the feeding tube has a purpose but not my mouth. Have a great day 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
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Well Jim, I guess ice cream is just for little boys and you have outgrown it. Hey, I know - put some of that good ole stuff in your feeding tube. Where there's a will, there's a way! I know your feeling though - I used to live off home grown tomatoes and decided to have a sliced tomato sandwich with lots of mayonaise to help it slide down. Well, first bite slid down just about to my esophagus and then decided to stop. After several seconds, that seemed like minutes, I managed to get most of it back up without choking. Oh well, at least I have wonderful memories. Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Julie, I wanted to taste how good t could have been and WOW was I in for a surprise. The taste was good but my mouth didn't like it. Therefore the tube would do no good as I get no taste thru that thing. I loved veggies and especially tomatoes. Damn I miss eating but am happy to be alive and simple. LOL luv ya gal.
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: 6 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: 6 | Sorry you couldnt eat ice cream Jim. I have found some places I can eat theirs where other places it burns my mouth. Chocolate is better for me than vanilla. Maybe try another place with a different kind. McDonalds hot fudge sundaes burn only a little so once in a great while I will try one but Cold Stone ice cream burns like fire. I can eat Rita's or Friendly's soft chocolate with hot fudge or caramel.
Ice cream or anything very cold in the tube might be a big shock to your stomach. Im extra cautious when putting anything other than meds or formula down my tube. But I have frequent stomach upsets and still take zofran on those bad days.
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: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | Hi Jim,
Sorry that you couldn't eat the frozen yogurt! What a bummer. One thing you could maybe try is to make a milkshake with a little ice cream and lots of milk. During/after treatment, I was eating ice cream every day and it was always easier for me to eat it when I mixed it with the milk, it burned less and wasn't as cold (which was my biggest problem).
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
| | | | | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2012 Posts: 50 | Sorry you couldn't eat ice cream. I can't eat anything but boost shakes. It's terrible to get up the confidence to try something and have it totally fail.
I keep trying and trying but nothing seems to work. It feels like my tongue is to big and too sore on the top to manipulate anything.
I hold on to hope. It's hard always to keep the faith when everyone around you can eat your favorites and you're stuck with nothing.
Tonight I shall try some chicken noodle soup. And once more try to keep the faith!
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Jim, love you brother you've gotta be the toughest dude I know
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Keep up the good fight and keep trying new stuff, it only helps make life more interesting!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Jim, sorry to hear about the great ice cream caper. I echo Eric's comment and I too am glad you're alive.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2009 Posts: 138 | Oh I love ice cream too. But the chemo I am on now for colon cancer has a side effect that makes anything the least bit cold burn your hands and mouth. And I guess it actually would make your throat close up. What a revolting side effect, huh? lol Have to drink everything room temperature.
BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
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