| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Stephanie, I have found some really nice organic juices at Whole Foods, if you're into that sort of thing. I do try to get some real food down my PEG - just because. The hay in the barn comment is sort of a joke - I have pet rabbits that eat timothy hay, so there's always a certain amount of hay on the floor. Not to mention, a slight 'barn' smell 
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Stephanie
you might also be able to tolerate white grape juice (not red). In addition to the flavored soy milk (I like mocca) you could also try almond based drinks (Almond Breeze). At this point I prefer them to milk.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | 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 | Stephanie,
How many Cals are you getting a day. They told me 2000 but I wish I had tried to get 3000 per day so if you can do more, I would go for it.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I eat anything I can make soupy in my Blender. Some of it burns like hell, but I get it down, Even hot chili a night ago and man was it spicy. I wish it would put some weight on my bones. LOL I get my thick shake every day like the Dr said also.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
How many calories are you downing a day?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Stephanie:
I just wanted to say thank you on so many levels. Your words, your encouragement and your strength. I also wanted to tell you how proud I am with you for being such a trooper as well as everyone else who has gone through this. You are and inspiration and well I have great respect for you. Keep it up you will reach the top and then we will "do the dance"
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I finally managed to find pear and peach juices but man, they were a pain to find!
David-
I get a little over 2000 in my PEG with the formula and then whatever else I eat or drink during the day. I don't know that I have enough room in my belly for 3000 calories!I'm hoping in the next few days to be completely off the PEG and drinking my formula and some soup.
Jim-
I'm impressed that you can eat spicy foods. I'm watering down juice like crazy - but I still have a couple mouth sores.
Dianne-
No Problem, I'm here to help. Gotta keep my mind occupied!
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: 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 saw one of the agonizing "take outs" on one of the Olympians last night and it said that Michael Phelps, the swimmer, eats 10,000 calories a day!! He eats more at one breakfast than I eat in 3 days!!
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 | David,
I'm like Stephanie, no room for 3000 calories.
Post surgery and thru RT week-three, they got me so fattened up (added over 6 pounds) that getting the mask buckled down was reminiscent of Guantanamo Water-board torture! I had got so fat they had to leave a buckle unlatched!
I had to go buy some bigger clothes!
Once I moved to the PEG they backed off to 1750 for a week and now this week upped it to 2000.
At 1750, I managed to lose a couple pounds and now I can squeeze in the mask again.
I guess I haven't yet hit that point where I need a lot of extra calories. For one thing, I am not exercising anymore (no jogging, hiking or gym).
I'm a couch potato!
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 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I saw that about Phelps! CRAZY! I couldn't even imagine!
Don-
My mask started to get really tight toward the end of treatment, combine that with a sore neck, that last week was brutal getting buckled down!
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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