#14878 02-07-2004 01:29 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hello, Great to be back on the board. The company I worked for downsized and I got the lay off, so I had to set up a home email address. Dan is in week 4 of chemo/rad and is pretty darn sick. Can't eat or talk due to swelling and sores in his throat. We feed BoostPlus into the PEG now. He has trouble taking the required doses of BoostPlus and water due to reflux and bowel problems. Any suggestions?
Dan Bogan - glad to hear that you are eating again and feeling better!!! Have you had your tests yet? Also, I have gotton some meds for me to get thru this - Lexapro and Xanax - any suggestions from your wife on getting thru seeing Dan suffer so and being so homebound? Also, very fearful that the chemo/rad will not get all the cancer since it was wrapped around the carotid and in the jugular at base of skull. I know God has the big PLAN and has the control and we are of course praying for strength, courage and complete healing. But I have such a hard time not thinking of down the road and the "what ifs"...any thoughts would be appreciated!!
Take care! Deb
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#14879 02-07-2004 02:41 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Debbie, Glad to hear that you both are still hanging in there and putting up the good fight. I also had trouble getting my body to accept the tube feedings. I had gas pains and diarhea for the first few weeks. My doctor gave me Zantac once a day and I also used over the counter Immodium to help my bowels. After about 3-4 weeks my body adjusted and I did fine with it. I also found it easier if I didn't do a feeding very first thing in the morning and if I did the feedings slowly. Something else that may or may not have made a difference is when I switched the brand of feeding I used. I was using Jevity but switched to the Wal-Green brand and it was so much better. Take care and give Dan a big hug.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#14880 02-07-2004 03:53 PM | Joined: Sep 2003 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2003 Posts: 31 | Hi Deb,
I was also going to suggest slowing the feeding down until he is used to it. In the beginning my father was "ashamed" to use the tube, so he would rush the liquid in, resulting in indigestion. However, after he got used to the concept and realized he had to slow down the feedings. It would take about an hour, using the gravity bag, for 2 cans of food to be completed. He always asks "Is it done yet" or "Is it actually going done"??? about 10 times during each feeding. So impatient! I guess I know where I get it from!
Well good luck, I'm sure Dan's body will get used to it!
Diana
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#14881 02-07-2004 03:54 PM | Joined: Sep 2003 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2003 Posts: 31 | Opps, I meant down, not done!
Diana
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#14882 02-07-2004 06:07 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Debbie, I cannot put my hands on the document I prepared regarding PEGs for patients my docs refer to me, but when I do, I will send it to you. In a nutshell, there are a few things that will help. One, already mentioned, is to run the food in very slowly. Another important one is to sit up, as though sitting at a table, and remain upright for some time after eating. And you must know by now that anything injected into the PEG must be room temperature or better to avoid discomfort. Finally, many small meals during the day and evening will usually go down more easily. Any OTC meds that the doctors okay can be crushed, mixed with distilled water, and injected into the tube to alleviate his discomfort. Take heart -- Dan is now most probably more than half way through! | | |
#14883 02-07-2004 06:40 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Folks, Since I wasn't a tube feeder, I am no help here. Except to let Diana and others know about the little icon with the pencil and paper which is the "Edit" button. If you want to make changes to a post once you complete it, you (the author) can make changes anytime by pressing that pencil icon. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#14884 03-17-2004 02:30 PM | Joined: Mar 2004 Posts: 10 Member | Member Joined: Mar 2004 Posts: 10 | It's a shame that most of our doctors don't give many instructions for feeding through the tube. My cousin who is an RN gave me some great tips. Take the plunger out and let gravity do the work. And slow is best. Also, Medicare will pay for diet supplemnets. We are on Deliver 2.0....470 calories per can....Big Mack. | | |
#14885 03-18-2004 03:32 PM | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2004 Posts: 104 | Debbie, My dad found that he felt better if he added baby food cereal to the boost, but he didn't have a peg. Does anyone know if it would be ok to add the baby food cereal to the boost for peg feedings?
My best wishes for you and Dan. Deb
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes. DX10/23/03 IMRT 12/29/03.30 rad,3 boost. Brachytherapy 3/8-3/11/04. Recurrence Nov07 Stage IV. 4 Surgeries No rads, no chemo I have oral lichens planus, thrush,leukoplakia 2/20/08 6/2/08 biopsies "inflammation"
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#14886 03-18-2004 05:41 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Dear Dell1064,
Be careful of what you put in the tube. You always want to flush the tube with water after each use. This will keep the tube clear and it won't be blocked up. Baby food mixed with Boost sounds Ok to me.Just remember to water flush when done.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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