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Shelby07 #169470 08-17-2013 05:50 PM
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I had it put in on a Wednesday and I was sore for a couple of days but it really wasn't too bad at all. I was using it by the next day.

The nutritionist prescribed Osmolite 1.5. By itself it was a little rough on my stomach at first but I started adding water to thin it out and that helped. The key was adjusting the drip on the gravity bag. Too fast and I tossed my cookies. Slow is better. Some folks used a pump that allowed them to feed while sleeping. Also, sitting upright during and for about 30 minutes after feeding helped as well. It also was great to get extra hydration. Hang a bag of water and bingo!

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Shelby07 #169472 08-17-2013 07:16 PM
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Kris has had a PEG placed on 2 separate occasions now. A simple day stay surgery. He had minimal pain and declined any pain meds . Really this is not a biggie.
We just used a syringe and pushed the nutrition and fluids in. No problems.
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!
Shelby07 #169474 08-17-2013 10:39 PM
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After my PEG surgery was a little rough on me, for about a week it was very painful until I saw the surgeon and he realized it was cinched to tight, he loosened and I felt immediate relief and stood up straight for the first time in a week. Then it took about another week to heal from it being to tight and pulling my stomach muscles. After that is was no biggie, I got to where I didn't even notice the thing anymore unless I was looking at it. The lesson here is if it hurts very bad then you probably need to have it looked at because something might be off. BE sure to keep it clean and follow your instructions for cleaning daily.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
Shelby07 #169497 08-18-2013 09:05 AM
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Has anyone considered the nasal tube????


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.
Shelby07 #169508 08-18-2013 10:08 AM
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Being a nurse I have dealt with both and placed many nasogatric tubes, both the regular NG and the dubhoff. The PEG was by far the better choice for me. With the NG tube it is held in place with tape, you have a much greater chance of it slipping out of place and if it does it can slip to the point the end of the tube is in the lungs instead of the stomach meaning everything you put in that tube goes into the lungs, checking placement before each feeding can help eliminate this but the risk is still there and it is next to impossible to check placement of a dubhoff without a X-ray. With the PEG once it is in place it rarely moves unless it is pulled with some force and if that happens in most cases it is just going to pop all the way out. The NG tube is also more obstructive IMO, you will have a tube hanging out of your nose and being that I still wanted to go to work and get out and do things it wasn't for me. With the NG you also have a tube running down the back of your throat which I have been told can be somewhat annoying. After the initial soreness wore off from the PEG it was hardly noticed and it was easily hidden under a shirt and tucked into my bra.
IMO the NG tube is something for a short interval of time if nutrition or suction is needed fairly quick. The NG tube was not even offered to me, it wasn't a thought at all. I have never heard of it offered as a solution for nutrition other than a few short weeks.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
Shelby07 #169512 08-18-2013 11:02 AM
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To clarify further, and I put some perspective on the NG (tube running from the nose to the stomach) vs PEG tube. I have not heard of the NG tube being something that is planned, The doctor knowing that eating is going to be an issue down the road saying well we will wait until you have that issue then put a NG tube in. I think it is used after treatment is underway and tried without the PEG and it becomes such an issue nutrition has to be given another way and perhaps that person is to debilitated to undergo the PEG surgery. The PEG is a planned procedure, not a quick fix for a problem that was hopefully going to be avoided. I think that speaks to the preferred method.
But the NG tube is something that is sometimes needed and can for sure be a life saver. smile A positive about the NG tube is no surgery is needed. But I would definitely rather have a small outpatient surgery for the PEG than someone running a tube in my nose, down my throat, and into my stomach while I watched, I do not like that idea at all.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
Shelby07 #169517 08-18-2013 12:29 PM
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The expected time for use, is also a consideration, if not already mentioned. A NG tube is usually paced for use less than 6 weeks, anything more a PEG is preferred, but surgery is also a consideration if healthy enough, but they can also place a PEG non-surgically by fluorence radiologically.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Shelby07 #169527 08-18-2013 03:55 PM
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I had the nasal tube put in post Tx in less than a minte; used it for 2 weeks, took showers with it; the tape issue is easily fortified with a safety pin pinned to a shirt; no infection worries, no cleaning around the wound because well there's no surgery or wound to worry about and I was allowed to pull it out and discard it at home myself. My biggest complement is I never had any post Tx or post nasal tube swallowing issues.


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.
Shelby07 #169537 08-18-2013 08:42 PM
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My team recommended not getting a PEG before treatment. They felt that its better for swallowing purposes to try to stick through treatment and take all nutrition by mouth. I am also young and without any other medical issues which may have influenced their decision. I lost a lot of weight through treatment, but haven't really had any swallowing issues.

Last edited by AndrewL; 08-18-2013 08:43 PM.

Andrew
age 25

early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+

2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
Shelby07 #169582 08-20-2013 08:39 AM
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I have tpo disagree about the Peg. I didn't have one either but it didn't take long before I was forced into one . Without it I would have died moons ago. Now I live only one the Peg and depend on it for meds and feedings of Jevity. Now I am left without a lower jawbone, no teeth not much of a tongue but still put my 8 hrs of work in in my yard and around my house. I had tongue cancer as well as in my bone. No teeth, and a lower jaw that looks like a shrunken piece of ice cream in 90 degree sunshine. From 200 lbs down to close to 100 lbs. Keep the positive outlook and you will make it thru this stuff. I am starting my 7th year as of August 7th.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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