#80930 09-22-2008 06:23 PM | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I am now 5 weeks out from treatment and for the last two weeks I've been trying to transition from tube feeds to eating by mouth. At first my throat was sore, tight and scratchy but its really eased up in the last week. I still have very thick, sticky saliva, but Robitussen and salt water rinses seem to work well for clearing it out. I can't taste much and eating some foods is a little like eating library paste (I think! I've never actually eaten library paste).
The challenge at this point? My tongue is still incredibly raw. Its actually getting worse! I slather the viscous lidocaine on it which lasts for about 3 minutes and its right back to hurting again. The sore tongue coupled with a queasy stomach after about 6 bites of food is making this exercise really difficult and I'm starting to get a little discouraged.
I'm not sure if I'm looking for advice here, or sympathy, or what. I guess mostly I needed to rant to folks who will understand. Thanks all for listening.
- 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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | You can do it!!!!! I have faith in you!! It just takes time and patience. Hang in there. You can't really make your body heal any faster than it wants too, so you just have to stick it out! The important thing is that you are trying, so don't give up! Eating does get easier over time, your tongue gets used to it and starts to build back up some strength and control. Hang in there!!!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | See, that's what's so frustrating! I'm not having trouble moving the food or swallowing, its that my tongue is on fire. It burns! I have a pretty high pain threshold, but this really hurts.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | My tongue was on fire for a few weeks as well from the mucositis. I couldn't even drink water because it made my tongue feel like it was on fire. I pretty much didn't take anything through my mouth during that time. Then over a period of a couple of days it noticeably got better, so hang in there. It will get better!!!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I will be a much happier camper when I can eat at least fairly normally again.
I'll be ecstatic when the PEG comes out!
Thanks for the support, Stephanie. I really appreciate it.
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 | Margaret, You definitely have my sympathy, but hang in there and try very hard to be patient. It will get better. Have you tried Phenergan or it's generic for the nausea? I had to take it with every food attempt for quite a while. The tenderness/burning rawness of my tongue lasted about 3 months I think, but that's me. I had other issues going on at the same time so maybe you can't go by me. It did improve during that time, though, and I can't really say when it was gone. I just didn't have much choice but to keep on keepin' on. I didn't fair well with the tube - 5 tubes in 5 months, replaced due to infection, one fell out, one my body sucked in and tried to digest, and clogs from meds that didn't mix well with any liquids I tried to dissolve them in. Just keep trying different things, sticking to soft and bland for now. Of course there's ice cream, but for a while that burned too much for me (too cold). Chocolate pudding with milk went down pretty well, though. I know we're all pretty tired of Ensure, but that or Instant Breakfast in a shake with ice cream would help with your nutrition. You can throw a banana in the blender for that shake, too. Try using a straw for liquids. I found it easier to swallow and the liquid doesn't touch as much of your tongue. I also spent some time living on mashed potatoes with milk & butter. I called it my comfort food. I still have mashed potatoes and applesauce with almost every meal. (Idahoan Instants are good, and it's just 4 minutes in the microwave.) The soreness left a long time ago, but other issues with swallowing came up and I need them, along with lots of butter, in order to get other foods like veggies (overcooked to soft) and meats (cut up very small) down. If you still have your teeth (I don't) and you don't have swallowing problems creep up on you (mine started over a year after treatment stopped but they don't happen to everyone) then you should be eating a lot better with a lot more variety in time for Thanksgiving.  Good luck, 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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Ya know, I'd forgotten what library paste tasted like until you mentioned it!
The burning mostly went away for me after a few months as the surface cells changed.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 |
Margaret:
At 5 wks out its still early for being able to eat successfully. A few easy things that you could try would be canned peaches, creamy yogurt, cream soup, or pudding. Texture also plays a part in what is easy to eat at this point.
I know how frustrating it can be to eat and struggle. Use the magic mouthwash and keep trying. Another thing that worked for me was to drink yoo-hoo or chocolate milk when eating. It will soothe your mouth and takes away the burning.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 |
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 |
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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