#40323 09-15-2006 06:20 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Yes, if she can feed herself she should do so. She'll know to stop if she's feling nauseated or is about to sneeze or cough (which can give you an interesting and messy lesson in fluid dynamics if you do that with a full syringe of food). When I had my first PEG put in, the nurse at the hosptial that showed me how to use it was great. She said "think of it like a bath toy you're playing with and it makes it not seem so horrible". I don't know, maybe that advice seems wierd to other people but it made me much less tense about using the syringes to feed myself when I eventually had to (which wasn't until several weeks later)...
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#40324 09-16-2006 09:45 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | PEGS can be fun, and amuse the occasional onlooker. I had mine inserted a couple weeks prior to starting treatment and from day one was pouring in as much as I could stand. I am not positive, but I think it was removed about a month or so post treatment.
I modified the input process a bit. I got some large 60cc syringes. I removed the piston/plunger, attached an adaptor to the PEG to handle the two different sizes, inserted the tip of the syringe into the adaptor and then free poured my Ensure into the syringe. When finished "eating" I flushed it with as much water as I could then handle to clean it.
As stated above, she will need to be acutely aware of the potential lessen in fluid dynamics should a need to hurl, a cough or even the hicups should occur. It only takes one time to realize the amount of force the abdomenal muscles can exert on the fluid in ones stomach.
Please tell her to eat, eat, eat and when she is full eat come more now while she is feeling reasonably well. She will not regret it in the least.
Bill
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#40325 09-19-2006 10:51 PM | Joined: Sep 2006 Posts: 6 Member | Member Joined: Sep 2006 Posts: 6 | My family has put me on a 3000 minimum calorie in take. I try to do most of it by mouth while I can. I use in Jevity 1.5 fiber in the tube also water. I have to keep the tummy stretched. But while I can eat every so slowly and yes painfully I try to get the good stuff down. Alot of chewing (mushing) with the front teeth. I have atleast 5 Nutrition drinks a day and the rest comes eggs, mashed potatoes with lots of butter and sour cream. and these chocolate covered cherries that are definatly to "live" for. The cherries are slightly tart and sting but I am willing to over look the burning. So to go on with my nasty list. Milk shakes and smoothies clam chowder and lobster bisque, baked haddock w/lots of butter saute squash w/lots of butter. I am having fun discovering what wicked things I can eat. Of course I am probably opening the door for heart disease now. Oh well. The doctor is pleased that I am holding solid at 120 lbs. I just had my 2nd chemo treatment yesterday and all went well. So extremely fortunate no vomiting and no nausea. I believe I will start my radiation in 3 to 4 weeks. I meet with him tomorrow and find out his plans for me. Please advise me on any deliciously wicked foods and treatment tips. Thank you for here. Penny | | |
#40326 09-20-2006 07:35 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Penny, for deliously wicked I would go with ice cream added to the blender with your smoothies, baked crab imperial (or lobster up your way)melted cheese on everything, loaded baked potatoes, and that soft moist chocolate mouse cake that has about 1000 calories per slice from the good bakery -don't forget to put ice cream on top of that.
Lots of Boston chowder, soft moist cookies of any kind, and chocolate truffles. I think you can get bags of Lindt at the grocery stores now. Harry and David have nothing low calorie so they're good. Have a box of those chocolate covered cheeries for me - do you put them in the freezer to get them cold?
Also you can take the Jevity and add chocolate syrup, ice cream and ice to make it a shake that you can drink. Jack still continues to do that even though his PEG tube is now out. Blended Dinty Moore beef stew, chicken or beef pot pies, and pasta with alfredo sauce. There's a frozen one from Barillo? that has about 600 calories per serving that you heat up on the stove.
Make sure that you have good anti nasuea drugs on hand in case you have problems down the road. You don't want to have to start calling for that when you're not feeling well.
Sounds like you're off to a great start. Regards 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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#40327 09-20-2006 03:39 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 | Gee Whiz Penny and JoAnne- I just finished dinner and you've got me starving again! Good for you Penny and good for your "bossy" family [bossy sisters?] Keep it up. 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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