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#190025 06-19-2015 01:06 AM
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kjp37 Offline OP
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Hi im 19 and had a total glossectomy a little over 2 weeks ago. I had trach which came out a few days after the surgery and now im home. At the moment I have to use feeding tube i can have sips of water but i usually cough a bit. How long does it take before i can move on to soft foods? Im already fed up using the feeding tube


2/3/15 Biopsy confirmed SCC on anterior tongue
2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy
22/7/15 2 x Cisplatin and 30 x radiotherapy
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Welcome to OCF! Im very sorry you have the need to use our site. Im sure your situation is not easy at all.

Learning how to eat again will take alot of hard work. Since you just recently had the surgery, this probably will be a long road. You will need to get some professionals involved if they arent already. A speech pathologist and dietitian should be able to help you with this. It can be a dangerous situation, eating if you cant swallow properly. Believe it or not, the muscles used to swallow can quickly forget how to function when not used all the time. This can cause aspiration pneumonia which is a serious problem. You do not want to have food go into your lungs instead of your stomach.

Doctors will make sure you are able to sustain yourself without using the tube for a month or more prior to removal. You must do this without using the tube for anything. I completely understand depending on a feeding tube is not easy. But its better to hang onto it and not need it than to have it removed and end up getting another one a couple weeks later.

Recovery can be a frustrating time for most patients. They can never get better quick enough. All patients are different too and will respond in their own unique way to procedures, medicines and therapies. This cant be rushed, in time with hard work you can get there. Try thinking of the feeding tube as a tool to help you for a temporary time.

Best wishes with yoru recovery.


Christine
SCC 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 smile
Joined: Mar 2011
Posts: 1,024
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Hello. You have certainly had a tough time. This surgery is not easy.
I hope that you are being followed by a Speech Language Therapist. My husband has also had a total Glossectomy. It was the SLT who helped him with swallowing issues and learning to swallow. She was the one who introduced him first to liquids and then to soft purees.. The fact that you are coughing with swallowing fluids indicates that your swallow is not quite right and that you are aspirating liquid into the lungs - hence the cough. It will take time , be patient. Kris stopped using his feeding tube about 8 weeks after surgery. Remember too that everyone is different. If I was you, I would chase down that appointment with the speech therapist at your hospital.
Take care, Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Hi KJP37,
So sorry you need this forum but know that is has amazing supportive people who have shared many, if not all, of your experiences. I was just recently diagnosed myself so I am still adjusting, and have come to realize, will continue adjusting for a long time. Be patient with your body---it has gone through and is going through a lot. I love your determination! With support from your care team and patience that determination will help!
Best of luck and hopefully you will keep us posted!


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
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kjp37 Offline OP
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Thank you all for your replies, Im going to see speech and language therapist twice a week and I just had my second session. Its hard work but im fairly motivated. They are recommending i try sips of water to try and use some more muscles. I cant swallow my saliva and as i was spitting today i noticed a small fly which was quite strange


2/3/15 Biopsy confirmed SCC on anterior tongue
2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy
22/7/15 2 x Cisplatin and 30 x radiotherapy
Joined: Jan 2013
Posts: 1,291
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Welcome to OCF. You have arrived at the best place to contact others who have gone through the same thing as you.No better than tossing questions to those who really know and care.

Your recovery and progress is measured in months; it is going to take time to heal and improve until you arrive at the new "normal". You will be making constant adjustments as you explore and find new ways to do what you just did but now it will be a conscious effort and take time to learn.

Hang in there and visit often,
don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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kjp37 Offline OP
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Another question. I've been reading that radiation will mess up my mouth and throat and fizzy drinks will be a pain. Will i be able to have coke or something like that after radiation. Apparently when i was coming around after surgery i was asking for some coke. Also either my mouth is getting dryer or im able to swallow my saliva a little


2/3/15 Biopsy confirmed SCC on anterior tongue
2/6/15 Total glossectomy + Bilateral neck disection + resection of a lot of muscle on left side of mouth to mandable + partial pharyngectomy
22/7/15 2 x Cisplatin and 30 x radiotherapy
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Will you be having rads?

Everyone who goes thru radiation will have a slightly different perspective. Theres a lucky few who have very few side effects and complaints but the majority of patients will not be able to drink soda. This can be temporary or for a very small percentage of patients, permanent. The same goes for spicy foods. I usually advise all patients going into rads to eat all their favorites now. I know you are still recovering and unable to eat. Heres alot more info to read about treatments from the main OCF pages...

Main OCF pages about treatments



PS... Ive sent you a private message (PM) with an important link. Please review the link and add a signature. Look next to the My Stuff tab near the middle of the top of your page. You should see a tiny flashing envelope, click on it to get your messages. A signature greatly helps our members get to know you and offer their assistance. Thank you smile


Christine
SCC 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 smile
Joined: Dec 2010
Posts: 5,260
Likes: 3
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HI there... I'm sorry you had to go through this you are so young. As everyone here is saying... patience. You will heal. It just takes a bit of time... now physical healing takes approx 6-8 weeks. But by then they will likely have started you onto rads. It does often make fizzy drinks painful (frankly I'm 4 years out and I still don't drink pop (mostly because my mouth now has a built in chemical shit alarm and pop tastes positively HEINOUS.) So do sugary fruit juices - particularly sugary ones. I drink a lot of green tea, and water with lemon. If I want a bit of fizz I throw in lemon juice/lemonade with plain fizzy water which tastes okay (I can control the fizz by adding more regular water so it doesn't burn so badly) but normally I'll do the water and lemon thing.
As someone says everyone responds differently. I don't do spicy, super acidic, or fake foods (processed) but everything else is good.

Once you get the sip working it will be easier to eat. I used to put a bit in my mouth and swallow my food with water. I still do with some of the more difficult stuff (bulky things)

Rads will not be fun. But you're young and strong and you will get through it.

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
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After surgery and rads, I had a greatly diminished ability to detect sweetness. Pop tasted only like really harsh carbonation & just sticky, and even other things like ice cream were unpleasant. It is back to nearly normal as before for me now, about a year post radiation. But I drink much less pop now than when I was a younger man - they are just empty calories with next to no nutritional benefit. Calories that I could put to better use eating something I enjoy more. I used to really looooove ice cream, but now I find I'll eat a few spoons worth of it and then the new part my tongue is frozen and then the ice cream doesn't taste as great.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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