| | Joined: Jul 2011 Posts: 48 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2011 Posts: 48 | how do you get off the peg tube. not ready yet as i still have no appitite and food still taste bad. havent eaten much meat yet. have tried chicken with mayo kind of dry. maybe dark meat like thighs. only one meal a day about 450 cals and thats with a gluserna 200 cals. anyone with experiance please let me know. as usual i'm probably rushing things. starting my 6th week post rad on monday.
dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
| | | | | 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 | When you can go for one month without using the tube then you are ok to get rid of it. At this point you may have some ups and downs so its a good idea to hold onto it. If your daily calories are only 650 then you need to do something about that immediately!!! You can end up being hospitalized for malnutrition and dehydration if you arent careful. Shoot for 2500 calories per day and 48 oz of water. Your body has been thru heck and needs to rebuild itself. Also push the protein, its to help heal you.
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: Jul 2011 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2011 Posts: 48 | Sorry about that christine thats 650 cal is only what I'm eating along whith the gevity 1.5 at night. pat
dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
| | | | | 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 | You scared me!!!! I thought that was all you were taking in. How many cans of jevity? How many calories does a can of jevity have?
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: 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 | Maybe try lessening the amount of jevity, and being a bit active - going for a walk etc... That may boost your appetite - a bit. Try adding soups or softish Bland food. You can live without meat - and maintain a high protein - there are lean of protein supplements. I've been a veg head for 8 years. Good luck!,
Last edited by ChristineB; 09-17-2011 09:08 AM.
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: Jul 2011 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2011 Posts: 48 | I have complications besides oral cancer I also have md and diabetes so I can't walk that much. I ride a stationary bike two miles a day so far. thanks for the info cheryld Pat
dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Hey Patrick - you're not rushing things but I strongly encourage you to be assessed and treated by a speech therapist ASAP - NOW is the time to work to strengthen your oral and swallowing muscles and a speech therapist can help you with the right exercises and plan to move forward towards getting rid of the tube. In particular, since you're dealing with MD as well, it might be a little more challenging you for you to re-gain the strength and coordination for you to swallow safely and often enough to get all your calories. A speech therapist and dietician can help you reach your goal!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
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