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Joined: Jul 2007
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Don,
During treatment I forced myself to eat something orally every day, most of the time is was just drinking �ensure� or something so that may have helped. I am back up to 164 lbs and am comfortable at that weight. Still have issues like dry mouth and food taste and it does get frustrating but I can deal with it and am living everyday to the fullest. Just got back tonight from hunting grouse with my youngest son in Northern WI. Wood heat in the cabin made the air very dry, but still loved it!
Going through the 7 weeks of chemo and rads and the week after were terrible but I think I healed quicker than others. I would like to believe that being in good shape when I was diagnosed had something to do with it but I just think this cancer crap affects different people in different ways.
Anyhow, hang in there and keep me updated on how you are doing.


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.
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David is right about patience. We all recover at different rates but have one thing in common: that rate feels too slow. Celebrate that you have so much taste back so soon. I was able to eat everything early on, but taste is still very sketchy after almost a year. Unless it has a lot of garlic or lemon or anchovies, it's pretty bland. And it was tiresome always being last to finish. Hang in there as it does get better.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I am new to this web site and not sure if I am doing this right. I had surgery for a tumor under the base of my tongue on the left side on 7/29/08. I have had radiation and Erbitux treatmeants which ended on 10/21/08. Biggest problem is the thick, ropey mucus which never seems to go away. I have tried Robitusin , but it didn't help. I can swallow very easily, but very difficult to eat. I only use the peg tube every now and then for the protein drinks. Any suggestions to combat the mucus is appreciated.
Bob
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I didn't find anything that worked well for me but I will say it will usually resolve itself in a couple of weeks. I had to carry a small Styrofoam cup in my pocket and just spit in it all the time. Gross for sure but it worked for me.


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.
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My husband like you has had over half his tongue removed and is struggling with eating. He is 6 months post surgery. I would appreciate any food advise you have for us. He is eating mostly pureed food, wet scrambled eggs and now very overcooked mac and cheese. He is also extremely fatigued.

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He is probably tired because he is not getting the proper calories and/or nutrition. In absence of the semi solid foods get him some Carnation Instant Breakfast VHC which has 560 calories in a small 8oz can.


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.
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For the mucus I took Robitussin to thin it out and eventually it does go away as you heal from the radiation, it can take a few weeks. I seem to remember just waking up one day and realizing I didn't wake up to cough the stuff up one night. It just kind of quits all of a sudden but it does take some time. Instead of tissues or paper towels I coughed the stuff up into soft washcloths and just washed those.

As far as swallowing, I always had more trouble with the pudding consistency stuff because I had to use my tongue too much to move it around and it stuck to every part of my mouth. I did much better with slightly more solid food. Baked fish is also really easy to eat.


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****


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it was strange how the mucous thing just stopped . I used to fill bowls of it just to see how much was coming out. Then poof it was gone and then dry mouth showed up. A welcome change i do remember.


Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma
April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008
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I wish this mucous and dry mouth combo would leave this mouth and go hide somewhere. I had my surgery on Aug 2007 and it's still very bad. The mucous is so thick that I have to reach into my mouth and almost bulldoze it off.But then, I guess I am different. LOL wierd too.


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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Weird is good!


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.
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