#47393 10-25-2006 11:29 AM | Joined: Aug 2006 Posts: 77 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2006 Posts: 77 | Hi,
I've been using the tube for about a week or so. I had been going OK. Yesterday, during feed a bag feeding, I started to get really hot & sewaty and then I got VERY nauseated. I happended to be going to the docs, so she gave me some purepac to pour down the tube.
Since then, the same thing has happended with every feeding but 1. I've tried doing only 1 can at a time, changing formulas, switching back to the syringe, etc.
Any ideas? I'm really stuggling to get calories in bacuase I dread this so much.
Teamshrink
Age 46; SCC BOT T3N1M0l dx 9/06
Cisplatin x3; radiation x42
Completed tx 10/31; Selective neck dissection 12/06
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#47394 10-25-2006 01:57 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | It took me a long time to get used to mine. I found several things that made me get sick right away. If the liquids were too cold, if I wasn't sitting upright when feeding, or if afterwards I laid down too soon, if I set the drip too fast that would trigger it for sure, and an a syringe bolus of liquid was completely out of the question. I also found that certain brands of nourishment could start things in the queasy direction, I finally settled on Ensure in various forms as the one that never caused a problem. All these things became clear to me through trial and error. The hospital gave me no preparation of potential issues when I had the PEG put in, or much in the manner of instructions on its use. I found out on my own about infections around it and more...
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#47395 10-25-2006 04:28 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | TS, we also had to experiment during the 1st few weeks of the peg feedings. !st thing we found was that John's stomach wanted very warm, not cold stuff. He poured a little at a time into his tube [no bag]and then followed with h2o. He did this slowly so he did not insult his stomach.He could not tolerate Boost, Ensure, or Equate brands [they made him nauseous] so you may have to experiment. He could not tolerate "flavors", so we stuck with vanilla. [we only use 2CALHN] Trial and error and feeding slowly got us in the groove. Amy
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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#47396 10-26-2006 08:35 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You might also want to give Carnation Instant Breakfast VHC a try. It is similar to Ensure, etc except it has 560 cals in the same 8 ozs. I found it very late in my treatment but it really helped as I didn't have to swallow near as many cans to get the recommended daily calories. I still drink 3 cans a day and eat 1 or 2 solid food meals. My nutritionist at Moffitt approves my use as well.
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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