#61866 09-29-2007 06:37 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Mom was given the ng tube when in the hospital for surgery. While she was there she did fairly well with her feedings, she had some gastric issues but they seemed to pass. Since she has been home she has been getting sick to her stomach halfway through her feedings. I have adjusted the volume to try to have it go slower but it still seems to make no difference. Is it possible that she can't handle the nutren? She had it the entire time she was in the hospital. I worry that maybe I am missing something here. The visiting nurse doesn't come back till Thursday next week. We meet with the surgeon, ro and mo, Mon., Tues, and Wed. Other than that issue she is doing fantastic! Will update on her more later. Any help about her feeding would be greatly appreciated.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61867 09-29-2007 10:24 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Donna, I had the same issues when I went home after my first surgery. I started being sick to my stomach with the tube feedings. I chalked it up to me being more active being home than I was in the hospital. I started trying some different types of foods and found that the Walgreen brand liquid food suited me best and it saved me money! I just started using my new PEG and had that sick to my stomach/headachy feeling tonight. I hate it! Take care, Minnie
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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#61868 09-30-2007 03:45 AM | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Hi Donna,
We are using Bill's PEG exclusively for feeding although the last few days his throat is way less sore, so he is drinking water and Gatorade by mouth. His script calls for 6 cans of 1.5 Nutren with fiber a day...a hard amount to get in him as he can only tolerate 1 can at a time. The first feeding (gravity) in the morning is his roughest...he gets a "flush" and slight nausea and has to sit still for at least 1/2 hour to get over it. We learned that he needed to shower and get dressed for his AM rad treatment before each feeding to allow time to just sit afterward. Each feeding during the day gets easier but it still is not perfect. I make sure that he gets at least 10 ounces of water with each feeding...seems to help all the way around and provides hydration...almost two quarts a day if we make all the feedings.
We have not tried anything else...this is what home health (insurance) provided us and we have stuck to it. I would a)give it a little time..b)add plenty of water before and after the can...and c)make sure she is still for a little time after feedings.
None of the nutritionists at the MO/RO had an answer for the "yuckies" after the Nutren...acted as if they had never heard of such...go figure. So, we have just toughed it out.
1 More treatment day left and we are done! Yea!
Good luck, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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#61869 09-30-2007 04:20 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 | The sitting still for a while after thing is really important, especially when the PEG is new and her stomach isn't used to it yet. If necessary, you may need to do half a can, in a slow drip form, at a time, let her rest, then give some more. That's what I had to do when my stomach was at it's queasiest! The other thing is to experiemnt with how she is sitting when she gets fed. Either stitting too upright or leaning too far back during and after tube feedaing can make it harder for the stuff to get through the stomach.
Nelie
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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#61870 09-30-2007 01:53 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Thanks!
Today's feeding went miserably. The machine continued to beep, she was hungry and couldn't get the nutren in...turns out that her dobhob is broken. I am vrey fortunate to have a friend across the street who is a medic in the army. He came over to aide me in trying to figure out what was happening, we tried flushing the line through and came upon the clog. He was so patient and continued to work the line. Finally we heard a pop. Mom said she could taste something, started to gag a little--saline. Called the ENT on call, fortunate for us, he met mom on Friday and said to give her her meds by mouth. I hope that they remove the trach and tube tomorrow. She is so hungry. No food tonight, not even that delicious nutren. I hate the smell of it, it reminds me of baby formula....my older daughter got sick and spit up--projectile in my mouth!! 17.5 yrs later and still gag at the memory.
I'll share all the info above with mom, it helps so much to know it's not just us.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61871 10-01-2007 01:50 AM | Joined: Jun 2007 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 26 | Donna, I hope for your mom's sake and your's too that the tube comes out soon. Sounds like she is having an awful time. My mom could not tolerate Nutren. She did best when she first started on Jevity. My guess is that, based on everything we tried, the Nutren might not have enough water in it as part of the formula, or else the fiber may be filling her up too much. My mom has had her tube for 4 months now and tolerates the feedings well, although still vomits every once in awhile if she has a lot of mucous and starts a coughing fit right after eating. Overall it was a lot of trial and error, but maybe the Jevity would help??? We also use Carnation VHC to cut back on the volume required for some feedings. My mom takes in a lot now - 2 cans of Jevity twice a day and one can of carnation twice a day (a total of over 2,000 calories).
I hope this helps. Send me a message if there is anything else I can do to help. We have been through the clogs, the vomiting, you name it!
I hope your mom is doing well. Sounds like, given all that has happened she is really doing a great job, as are you.
Amy
Caretaker to my best friend, my mom. Age 60 - never smoked or drank. St IVA oropharynx. 37 radiation tx, 8 carboplatin tx. Diag 5/31/07-TX completed 8/16/07-good PET 10/10/07. Passed away 3/28/08 due to weakened blood vessels from tx. Now watching over her triplet grandsons born on 5/19/08.
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#61872 10-01-2007 02:39 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hi Amy, Thanks so much for your help. Feeling a bit lost at the moment, she is so hungry and the appt with her surgeon isn't until 1pm. I know she could handle something to eat by mouth, but can't allow her to do it.
Where are you in NJ?
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61873 10-01-2007 04:23 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Donna--will be thinking of you and mom at appointment--hope all goes well for you both,
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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#61874 10-01-2007 04:25 AM | Joined: May 2007 Posts: 231 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2007 Posts: 231 | I also use the Nutren 1.5 with fiber. What I do is dilute it with water and then run it through the tube. I mix a can of Nutren with 300 cc's of water and then run clean water through my tube when I am done to clean the tube out.
Billy
Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
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#61875 10-01-2007 09:09 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 |
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61876 10-01-2007 09:19 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Went to surgeons office, tube removed!!!! I am so relieved. I think mom is even more so as I have pretty much pulled the tubing each time I was trying to take care of her. Mom is hungry, going to try to find her something to eat
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61877 10-02-2007 09:12 AM | Joined: Jun 2007 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 26 | Donna, That is amazing news. I am so happy for your mom, and you too. I am looking forward to the day that we don't have to feed my mom through a tube. I feel awful... I work at a culinary school and all I can feed my mom is Jevity and Carnation VHC!
Amy
Caretaker to my best friend, my mom. Age 60 - never smoked or drank. St IVA oropharynx. 37 radiation tx, 8 carboplatin tx. Diag 5/31/07-TX completed 8/16/07-good PET 10/10/07. Passed away 3/28/08 due to weakened blood vessels from tx. Now watching over her triplet grandsons born on 5/19/08.
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#61878 10-02-2007 09:23 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Great news Donna hope the feeding goes well
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#61879 10-02-2007 10:42 AM | Joined: Aug 2007 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 51 | Are there any LONG term tube users out there I mean for years that can give me any advidce on maintaince. It appears my tube is going to be forever and I am only 58 at this time. My swallow function seems to be frozed from treatment. Only water will go down if I hold my breath and swallow hard.
Jim W. DX and treated May 1997 stage 4 tonsil cancer 40 radiation 2X daily at the same time 8 weeks IV chemo cocktail 5 types on 5 days off 2 days refuesed neck resection. 10 years clear now swallow function ceased May 07 after pneumonia.
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#61880 10-02-2007 01:15 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hi Jim, I don't have an answer for you, I don't know much-who am I kidding?-I don't know anything really about tubes. Maybe you should re-post this under a new topic, subject -- long term tube users? May I ask, what kind of treatment did you receive? Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61881 10-02-2007 02:47 PM | Joined: Aug 2007 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 51 |
Jim W. DX and treated May 1997 stage 4 tonsil cancer 40 radiation 2X daily at the same time 8 weeks IV chemo cocktail 5 types on 5 days off 2 days refuesed neck resection. 10 years clear now swallow function ceased May 07 after pneumonia.
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