| | Joined: Mar 2014 Posts: 1 Member | OP  Member
Joined: Mar 2014 Posts: 1 | Hi My name is Fran and I have a feeding tube for 4 1/2 years. The radiation caused also dry mouth and loss of hearing in right ear. I am looking to talk with someone with the same problem. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Hi Fran. Welcome to OCF!
There are many long term feeding tube users on the forum including myself. Radiation can cause many ongoing problems for patients. But there are many worse things than having to use a feeding tube.
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: May 2014 Posts: 2 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: May 2014 Posts: 2 | Hi Fran,
Although I do not have the feeding tube in now, I did have one for 6 months...I too have got hearing loss in my right ear with a constant ringing in it..I have dry mouth and stay away from foods/beverages that seem to make it worse..for example, chocolate, grapes (and wine), apples,and things with sugar. I have changed from Biotene mouth rinse to ACT Total Care Anticavity Fluoride Mouthwash for Dry Mouth which I bought in the U.S. at Walmart..which, by the way, I also bought the Biotene Toothpaste which is about 1/2 the price there than what I pay at Walmart in Ontario. Also, I always have a bottle of water with me. Take care, Sharon
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Fran, my husband had a feeding tube for two years as his esophagus was totally closed by strictures resulting from scarring. Recently an interventional radiologist opened it up for him using a new procedure. He is now drinking and eating soft food. The Cisplatin he had also caused a 10% loss in his hearing. Since he started swallowing, the dry mouth has been much improved.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | 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 | I've. It iced after three and a half years my saliva has almost completely returned... Yay... It takes a while... Hugs
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: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | Hi Fran , I had a NG tube for 9 weeks, I thought I managed sips of water throughout this time but my partner says I didn't?! My memory during treatment isn't that good as I slept a lot of the time, so I'm inclined to think Mike is right. Do have some vivid memories of sitting up during the night with a glass of water so perhaps I'm right after all, would like to think so anyway!
Now I'm able to eat most things providing they are moist need gravy or sauces and a constant water bottle to aid swallowing and dry mouth. Taste is not great can taste some vegetables and salmon or smoked fish, and marmite savoury foods . Have no sweet tastebuds I'm afraid. Been on pilocarpine for 5 months now I find they help me a lot with the dry mouth but do have side effects that you have to manage . I also chew sugar free gum most of the time or leave it under my tongue if my jaws aching which happens a lot .
Take care keep moving forward and come here as often as you can is the best advice I can offer.
Di
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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