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I finished radiation and chemo 16 days ago. i have been eating and drinking fluids however i have not gained any of the 11 lbs that i lost during the treatment. i have a PEG tube in that i do not use because it never agreed with my system hence, i am very anxious to get it out. The PEG makes me very nauseaus, my stomach has not been the same since i had the PEG put it. My question is should i wait until my first scan which, is 6 weeks from now to have the PEG removed or is it ok to remove it now without scan results in hand? also does the removal hurts?


diagnosed 12/20/2006 with undifferentiated large cell salivary gland cancer
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Hi, coquito, those are kinda tough questions for several reasons. #1. Do you want to gain back the 11 lbs? #2. How to you feel at present? #3. Does everyone on your medical team feel that you are getting adequate hydration and nutrition? #4. Do you have any more treatment proposed? #5.If you tried to use the PEG, what about it did not work for you?. #6. For most people, the removal of the peg does hurt for a very short time [a few seconds or minutes] and then it is over. You need to realy explore the options with your Oncologist. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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At present i feel ok, except the constant stomach upset. The peg has always upsetted my stomach. I wasn't able to tolerate the feedings well. It made me nauseaus, i felt bloated and just not right no matter how i administered the feedings. i only used the peg tube during the entire treatment about 15 times because of it. Dont take me wrong when i used it, it was a lifesaver but it was hard. as far as gaining the weight. Yes i want to gain the 15 lbs. but the peg tube is not helping by giving me stomach discomfort that does not allow me to eat my food. but for the most part i eat three meals a day by mouth. as far as my medical team they feel that i should wait a bit but due to all the discomfort that it is ok to remove it now. i am just afraid of removing it prematurely. Jam thanks for your imput.


diagnosed 12/20/2006 with undifferentiated large cell salivary gland cancer
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coquito,

Your body is still under attack and it will take a lot of extra calories to help your body heal itself much less add weight. Also remember to generally add 1 pound of weight under NORMAL conditions you must increase your daily caloric intake by appx 500 calories. My "people" had me consuming 3000+ calories a day when I came out of my dark tunnel around week 3 post Tx and I still didn't add any weight for the first 2 months or so. I am just now, 7 months out, beginning to feel my belt needs some adjusting and usually only after lunch. In the am I'm still back to a tighter loop.


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.
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No need to sugar coat the PEG removal. It is quite painful but only for 2 or 3 minutes in my case. I had asked one of my nurses early on how the PEG was removed and she told me that they simply grab hold of it and yank it out. I thought she was pulling my leg but was never quite sure. It came time for it to come out and guess what? She had not been pulling my leg.

The nurse told me to lie back on the table and hold onto the sides of the table real tight. I did that and WOW! She then said be still and stay on my back and the pain will fade in a couple of minutes. I saw stars for a couple of minutes then sure enough, the pain gradually faded and was all gone after 5 or 6 minutes.

I have often wondered, when PEG's were invented and one was first installed, who had the great idea of simply grabbing it and yanking it out? Wonder who had it done to them first?

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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I had also heard the horror stories of PEG tube removal and was apprehensive when the time came. However, my gastroenterologist removed mine in the hospital under a local anesthetic and it didn't hurt at all. I asked him about the "yanking" method and he said he thought that was barbaric and needless pain for someone who has just endured cancer tx!


Dx 2/12/2004 T2N2M0 SCC of right tonsil.Tx 4/13/-6/03/2004. Surgery, IMRT/Bilateral w/boost 35x, Carboplatin + Taxol 6x.
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I waited almost two months post-radiation before I had my PEG taken out.

My gastro offered me the choice of setting up an appointment to have it removed under anethesia or just do the yank method right there in the office -- I chose the yank and it only hurt for a few seconds, hardly bled and healed quite nicely, plus I didn't have to have someone drive me to the office.

Coquito, you might try pushing or pulling or twisting a little on the tube itself to see if you can make it more comfortable -- I was in the last few weeks of using mine when I realized that the tube could slide in or out of the 'donut' surrounding it and I could adjust it for easier flow (I never experienced discomfort, so I can't speak to that) -- The inner end of the tube has a wide spot so it can't pull out of the donut.


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.
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Hi Coquito,

Jack had the PEG tube yanked out and didn't have any pain, more a moment of pressure. That was 2 1/2 months post treatment. I think Amy laid it out pretty clearly for you and I would answer those questions before you get it removed. It really could be too tight but if you are not using it because you are able to eat and drink AND it's bothering you then I would talk to your doctor about having it removed.

They don't need to wait until the scan but you do need to show that your weight has stablized before the doctor agrees to remove it. You can increase your intake by mouth to regain the weight as long as you are swallowing okay. Are you keeping track of what you are eating and aiming for between 2500 and 3000 per day? The PEG tube was a lifesaver for Jack but he was using it and it doesn't sound like that's the case for you.

Good luck,
JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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I am having a hard time eating that many calories a day. can somebody give me an idea of what they eat throughout the day. i can only eat about 1500 cals a day. i am only 5'4 and 114 lbs. i know that i need to eat more than that but i don't know what to eat. after all everything tastes like cardboard.


diagnosed 12/20/2006 with undifferentiated large cell salivary gland cancer
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Hi, Coquito- At 5'4", I'm not surprised you are having trouble with adding calories by volumn- anyway. Here are some suggestions that won't increase the amount you have to eat, but will increase calories. Add whipping cream or powdered milk or whole milk to any cream soup or shake you make. Make a sauce using a good cheese and cream or whole milk to puree with veggies [spinach, broccoli, cauliflower. Angel hair pasta [easy to swallow] coated in rich cream sauces have lots of calories- Welches Concord grape juice adds 100 calories to your diet. Tell us what foods you are eating now- maybe we can send you some ideas to augment them. AThe most important thing is to not not lose weight! You can gain it back slowly- that's O.K. Amy in the Ozarks.


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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