| | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | David's right eat!!!  flouride really bothered me - still does - it should be a thin bead of flouride - when things were bad my dentist told me to use it as I could and on weekends once my mouth was okay again I started up - if you can do it for as long as you can then do. Rads too will definately cause gum issues - they used to say you can't feel rads - it's true you can't but I could feel my scar tissue tightnng and my throat too. Ergh! No pain just tightness in the beginning. Onward and upward! Slowly you are getting there!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 | While eating like crazy try to pay attention to your daily intake of calories. You MUST get a minimum of 2500 calories per day. I know it sounds like its alot but your body is fighting cancer and going thru treatments further taxes your body. It is burning up calories at an incredible rate. If you can take in 3000 or even 3500 calories it wont cause you to gain weight right now. The more the better!!!!! As far as water, a minimum of 48 oz every single day is necessary, more if you can do it. If your nutritionist told you anything less then 2500 calories and 48 oz of water daily then they are NOT experienced with oral cancer patients and if I were you, I would ask them exactly how many OC patients they have treated.
Keep doing the cans of formula daily so when the time comes you need that tube you are proficient. Also the tube is a good way to get extra water intake by flushing it a few times per day. Just think if you flush it 3 times a day w/ 3 syringes of water thats already 27 oz of water you got in. Drink 3 water bottles and that is another 48 oz. in addition to the water in your food so you would be doing excellent with hydration. Keep swallowing even if it hurts.
Good luck!!!!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Honestly, listen to us!!! Kevin eats now because he has too. Nothing tastes the same and he really misses the things he loved. If you don't do it for the calories, do it as a farewell for awhile. Have fun and enjoy your favorites!! Kevin went down 56 pounds...
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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