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#80247 09-10-2008 10:05 AM
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After a few days of phone calls back and forth with my doctors I am finally scheduled to get my feeding tube removed on Monday morning! It was put in by a radiologist so I have to go to the OR to have it removed. Not sure why, but whatever. I'm hoping it's just an in and out deal and they just pull it and let me get on with my day. I have to be there two hours before my appointment and I can't eat anything after midnight the night before (which is going to kill me! I usually wake up STARVING in the morning). Well, I'm going to be patiently waiting for Monday and hopefully the anticipation doesn't kill me in the mean time!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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That is great. It's over in a flash and nothing but a sting. Doctor said he enjoyed this part as it meant you were on the "upswing" which is true.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Getting my peg pulled out made me feel like it was one more step to things returning to normal (or a new normal). It was an important part to my speedy recovery that I gained valuable nutrition and hydration, but I hated sleeping on my back all the time and dealing with it while taking a shower. Great job!


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
TomK #80256 09-10-2008 12:22 PM
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Congrats Steph. That was the first thing that helped me feel like I was winning !

Now over a year later, my second bellybutton is staring to fade.....


Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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How much of a sting it makes is dependent on the PEG itself -- My first PEG had a balloon on the end and stung when it was pulled out (No prohibition of eating before hand, BTW) -- My current PEG has no obstruction on the end and just slides out (it's been out twice for cleaning of blockage) and slides back in.

First PEG was put in by Gastro Doc, second PEG by Radiologist.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #80274 09-10-2008 06:23 PM
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Thanks for all the comments!

Pete- I'm positive my peg has a balloon on the inside or else it would have fallen out a long time ago (my dogs like to jump, and it gets caught on everything). So I'm sure I'll be feeling the sting of removal but after all the other things I've had pulled out of my neck and done to my body in the past 4 months I'm sure this will be a breeze! I don't think I would be able to handle a peg tube that you can take out and put right back in, bleh. AND, I'm not sure what's up with the whole not being able to eat beforehand thing. It's going to be the death of me. It figures, I survive cancer and treatment, only to die of starvation waiting to have my feeding tube pulled.

Tom- like you I hate sleeping on my back, I sleep on my side for the most part, but I do occasionally like to sleep on my stomach. I'm looking forward to being able to not worry about rolling over on it!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Steph
Congrats on getting rid of the PEG tube!!!!


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
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Congratulations Stephanie!! What a milestone! I am so happy for you.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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I believe it was in Haley's blog that she wrote they just cut her tube, pushed the ball into her stomach and let nature take care of it.

I like that idea. Anyone else heard of this option? Or is this only a UK procedure?

My MO said today getting rid of my peg was next on the agenda and I would rather poop it than pull it smile


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #80302 09-11-2008 09:15 AM
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the ballon is inflated with a small amount of saline,which they remove before taking the peg out.In the uk i think its a bit like the elastoplast pull.grit your teeth and out she comes.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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