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Don, I would do the Carnation VHC, so you are getting 560 calories per tiny can instead of the 300 or so calories that Boost gives you. And then stay committed to documenting calories and fluids for a while till you are back on track to insure you are getting enough for a full recovery... don't want to lose weight or get dehydrated as those do not help with recovery. With committment you can do it, the PEG only helped get it in there, and hopefully your appetite will improve as your taste buds wake up a bit and begin liking what they taste. I wish you all the best with the transition. It is scary a bit when we rely on something but moving forward is always best if we can do it and I know you can - keep the faith.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Stephanie,
I had a couple sample cans of the the Carnation Instant Breakfast Plus -(Vanilla/Vanilla Swirl). So today, I tried one and it isn't bad. I need to look into the VHC - the CCC doesn't seem to get any VHC samples.

A few weeks ago, I had tried a vanilla drink, but it was a no-go. A week or two can really make a big difference in taste.

I haven't been using my PEG much, (just nibbling and drinking ensure, juice and stuff), consequently I have not been keeping up the calories like I should.

Without an appetite is so easy to get busy and let the nutrition issue slip.

I had gained so much extra weight for TX, that I can't believe I have now lost all of it and about eight pounds more!

A couple weeks ago my ENT told me I should get back to going to the gym, and that should help my appetite. Instead it has just caused my PEG hole to bleed and now it hurts like hell!

Back to couch-potato for two more days, then this PEG is out!


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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Don,

Let your taste take a back seat to your nourishment. Get the VHC and just start pouring that stuff down. Six cans a day will get you plenty of nourishment. I drank the VHC for well over a year post Tx. I got to the point where I mixed in 8 ozs of whole milk and drank it with nearly every meal. It really helped because I didn't like eating during that phase of my recovery. Don't forget the water either.


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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Don-

Definitely keep up the nutrition and once you start eating more food by mouth (things other than VHC and stuff) you will start to notice a big increase in your energy and how you are feeling overall - at least I did. And then you will be hungry all the time. I drink an instant breakfast every morning (I won't touch boost or ensure with a 10 foot pole), sometimes I add a scoop of protein powder, but not always because my weight has finally decided to stop rapidly dropping (it was related to my dysautonomia). I drink milk at every meal for some extra calories and just try to get as much protein in as I can. I gained about seven pounds during treatment and now I'm about 10 pounds down from that (since the beginning of August), but I have plenty of energy and I'm eating like a horse, so my doctors are letting it go for now. Good luck with the PEG removal!!!!


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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EGGNOG!! It's Eggnog Season!


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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Don,

I am so glad to hear your getting your !@#$% PEG tube removed! That is just great, great news. I haven't used mine for about 10 days now and will get it taken out on Nov. 20, provided my scans come back clean.

Like you, my taste buds are pretty dead so I'm finding that texture is more important than taste. Foods that are wet, like cucumbers with dip, are working well for me and once I really started eating, and thinking about food as energy and not fixating on what I've lost, the whole process got much easier. Today for lunch I had a chopped salad - very healthy, not unpleasant but basically no taste. Its a struggle to let go of the "pleasure" part of eating, but I figure it should be all uphill from here and I'm learning to be OK with that.


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
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EGGNOG!! It's Eggnog Season!

All I can say to that one is a matter of taste EWWWWWWWWW!! lol


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
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Eggnog season?!?!?! It's definitely GUMBO season!


Margaret - glad to see you are doing well! When are you going to get those scan results??


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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smile

Scans are on the 17th, follow-up with docs on the 20th.


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
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It's so easy to get "peg dependent". I did, it was easier to pour
nutrition into my peg and there was no hunger pangs, just full all the time. I could have eaten sooner, it just gets easier, hard to explain.
Its def a PULL when they pull it out and mine took way longer than
one day to heal. I can't look at blood and gore-so I didn't look but just touched or my husband helped me change bandage. But I
would not drink a soft drink of any kind afterward. Other than that
it was not hard atol except for thinking of the pain of the pull, which was over in a second-then a big smile!!!
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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