Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#91713 03-13-2009 08:23 AM
Joined: Mar 2009
Posts: 32
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2009
Posts: 32
Had this darned thing about two weeks and my stomach sure does not like it much. Everyday I have the feeling of being full, or bloated, and not hungry but still try to eat a "usual" meal. The feeling in general is that nothing is moving. Tried Mylanta and GAS-X, to no avail. Any suggestions??


John Retired US Government (DoD)
Age: 61
SCC/BOT discovered neck mass 11/08
Removed neck mass 09/01/09
Final Diagnosis after scoping on 02/08/09
Chemotherapy and Radiation: Paclitaxel and Carboplatin, 8 weeks of chemo (1X weekly) and daily radiation both sides of neck). First treatment 03/02/09
johninnm #91718 03-13-2009 11:28 AM
Joined: Jan 2009
Posts: 216
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Jan 2009
Posts: 216
What is your "usual" meal? H had some problems at first too, asked for a mild laxative which turned into a disaster and left him dehydrated. We're using Benefiber mixed in with Ensure and also pushing water or Pedialyte. Don't know if that will help you but H has had his Peg in for a little over a month and we're just now doing better. Also switched to a gravity feed bag rather than bolus feedings. When he takes it in slower, he does better (doesn't get that bloated feeling)and gets more in.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #91755 03-13-2009 05:46 PM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Dulcolax worked fine for me. Take it in the evening but be careful where you are the next afternoon. LOL . Family Dollar has the exact same stool softner in the same looking box but you get 3 times as many for 1/4th the price.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
CherylR #91760 03-13-2009 06:07 PM
Joined: Aug 2008
Posts: 113
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Aug 2008
Posts: 113
We switched from Bolus to Gravity. Bolus made him feel too full. Since Jim sleeps most of his day away and was eating less, I decided to increase the colories per can to 500 calories instead of 375 per can. The can of 500 calories was way too strong for him, so we went back to the 375. He is only taking 1500 calories a day. He refuses to take anymore and that really bothers me. He is skin and bones and he breaks my heart. -- Claudia


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
Claudia Nelson #91767 03-13-2009 08:15 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
A couple PEG tips:

If there are digestion problems, try watering it down. Add about 1/2 can water to dilute the formula.

The pump machine worked great for me. I did overnight feedings to help get my nutrition. It made it so much easier to 'eat' while I was sleeping (of course propped on 2 extra pillows). Run the machine very slow to make it even easier to tolerate. I would load it with 4 cans and some water, set it for the night and go to sleep. Then during the day I would only need 1 or 2 cans and water.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #91816 03-15-2009 05:57 PM
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
What type of liquid food is he using? Does it have the prebiotics and fiber?

I was not comfortable with my feedings until after I came home from surgery even though the PEG was installed prior to that when I started chemo. I find now that when I eat regular food a small amount will sometimes make me feel very full. I also find that some foods make my stomach uncomfortable. I am still using the PEG for most of my nutrition while I learn to eat.

I hope that it improves.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
johninnm #91831 03-15-2009 09:59 PM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
I am a newbie with the PEG but a grizzled veteran of the radiation/chemo pain killer constipation blues and cheap OTC generic suppositories worked better than any laxative even the prescription ones both then and now Gravity also works for me rather than bolus.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #91833 03-15-2009 10:14 PM
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
I only used a syringe (50 ml) which took several loadings. 50 ml at a time is just a tad less than 2 ounces.
I never tried this laying down and this may be part of the problem too, you should sit or (stand).

M






Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
johninnm #91889 03-16-2009 04:34 PM
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
John,

My case was similar to yours and my first and only symptom was a oval or egg shaped mass on the right side of my neck, just below my right ear. I am now going on 3 years clean and am sure you will take the same path.

You mention your PEG and also refer to things "not moving". If you are referring to constipation, "I can hear you brother"! I am a well worn veteran of that ride while I was in Tx. It was brought about by the pain meds and I followed the instructions of my Tx staff with stool softener and a vegetable type laxative as needed. That's the best advice I can pass along (no pun intended) to you in that arena.

Bill Dozier


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.
William Dozier #91898 03-16-2009 05:19 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6

Where else can you chat about constipation? What a topic!!! Its a shame how many things affect OC patients. A tip that works for the "big C" is pineapple juice. Its a natural laxative.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #91915 03-16-2009 07:02 PM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Pineapple juice would be good if your mouth and tongue can handle it. My just doesn't agree with me drinking most fruit juices. By the way, I know another guy that was constpated all week. When I finally got to. I lost 3 lbs in one sitting LOL It makes you feel that you might go to the great beyond.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #91930 03-16-2009 08:38 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Pineapple juice works the best when put down the PEG tube smile

Dont have to worry about it burning your mouth.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5