| 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 | I suggest using the tube for supplementing your husbands water intake. Flush it a couple times per day with water. If he is able to eat and take in 2500+ calories per day encourage him to continue to do so. It isnt necessary to depend on a feeding tube if someone is able to eat and drink. That will promote dependance when it is unnecessary. No reason for that! Good for you for standing up and being a great advocate for your husband!
Best wishes! 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: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | NO surprising. Mine pushed me to. She kept saying try it make sure the formula is okay (it may take a few tries to get one you can tolerate) I guess she didn't want me to get to the point where I NEEDED one and couldn't find a formula I could have. Both times I used it I vomited violently, so I stopped. And suffered by mouth. Which was a good thing. I had the peg out two weeks after rads finished.
take care.
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: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | That's true I think she wanted my husband to see if he would be able to tolerate the formula in case he came to that point where he would need the peg for calories but really she should have said it that way it was like she wanted him to take formula more than doing the intake on his own I got really frustrated on that subject .. He into week four so I'm hoping for him that he will continue to swallow by mouth if he needs the peg then it's their and yes I have been putting water trough the peg , keeping it flushed everyday since he had but one day and that's when he first got it we left the hospital with out talking to the the dr that placed the peg cause we had been their so long from a delay they had and the dr was still in the operating room .. The nurse said it may be awhile before he will discuss the care for the peg they we're so busy she didn't have time to tell us but seem very nice so I came home and got my info from here very thankful for this site and all the caring people on here that takes their time out to reply to the post!!!
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: Jan 2014 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2014 Posts: 31 | My mom is mid week 5 without a peg. She's gained a pound since the start of radiation. She's worked hard at getting her calories and water down. The radiation nurse was ready to give her a medal. However, the interim RO (regular doc is on vacation this wee) said, "I don't understand why you don't have a peg, you won't be able to finish this treatment without a peg. Let me call for a consult on the peg."
We declined. There was a reason the RO and MO decided not to place the peg unless she started to go into a weight free-fall. One pound gained in 5 weeks of radiation is not a weight free-fall.
Caregiver to mom Chris, symptoms started 12/18/13. Biopsy 1/18/14, Diagnosed t2n2 2/3 2014. 3x Carboplatin and Taxotere finished 4/21/14. Chemo/Rads 8 erbitux 36 rads began 5/12/2014. End 6/20/2014. Pnuemonia 6/23/2014. 1 month in hospital 3 in rehab. PEt NED 11/8/2014, T3 recurrence DX 3/4/2015. Hemiglossectomy/mandiblectomy 4/27/2015. 30 rads end 07/24/2015. 4 years NED.
| | | | 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 | Re the PEG.....there is a NON SURGICAL option to the PEG and that is the nasal tube. It takes a minute to slide the tube up thru your nose and into your stomach. It's rigid at first because it has a thin metal stip in the tube. Once in place they take an X Ray to make sure it's where they want it to be and then they slide the metal strip out. It's meant for short term uses which is exactly what we need. I refused the PEG but 1 week post Tx I was in serious trouble. I couldn't swallow without sever pain and then I would gag and toss those cookies. I was going down hill fast but they talked me into the nasal tube and wow I used it for 2 weeks and was allowed by my doc to pull it out at home myself. It made a HUGE difference in my recovery. No pain, no discomfort ever. Even took showers with it. I can't understand why this isn't pushed way ahead of that PEG???
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | BWB your mom is doing great by the sounds of it. I lost weight.. about 12 lbs. Then after treatment I lost 21 - (I had it to lose) mostly because I revamped the way I ate cutting out all crap and processed foods. I have gained back about 5 lbs as I was told I was too thin by a casting agent (VERY UNUSUAL) Initially all food tasted crappy but now natural foods taste fine and I am still not the sweet-aholic I used to be (my sweet taste is VERY DULL) which is a blessing for my teeth, weight, and health.
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
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