| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | How many OZs were you guys able to put in your PEG at a time. I am miserable if I put more than 2 ozs at a time. I tried 4 ozs tonight and I feel terrible. It may not all be just that. It could be that I still gag when I talk at all, because of the uvula thing. It is miserable. UGH
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2007 Posts: 104 | Angelia do you have a feeding pump to deliver your feeds into your PEG? It can be set at different speeds and one usually starts at about 2 oz. per hour and increased each day until you reach your tolerance level. Feeds are usually tolerated better with this slow continuous delivery.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | No pump, just syringes. Should I ask about a pump? How do you get a pump? I know they are looking at getting me a suction maching for all the mucous, but never mentioned a pump.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
A mid way point between the slow pump and fast syringe is a gravity feed bag. I have been using the gravity feed bag since February with no problems. I occasionally use a syringe when out and am trying to acclimate myself to that as it much faster than the gravity feed bag, which is much faster than the pump. An 8 ounce can of Jevity 1.5 takes from 30 to 40 minutes in my gravity feed bag depending upon how new my Y extender tube is. My insurance pays not only for Jevity and the syringes but also for the gravity feed bags and the Y extender tubes So after much digression, here is my personalized answer to your question: I have always been putting 8 ounces into my PEG tube Charm 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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I guess I could ask for a gravity feed bag. I have just been letting it for through the syringe using gravity and it doesn't take 5 minutes.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Nov 2005 Posts: 7 Member | Member Joined: Nov 2005 Posts: 7 | I put 2 cans of formula and 2 cans of water for a total of 1000 ml in a Kangaroo bag. It despenes in about 30 to 40 minutes. It all depends on what you can toleerate. My thinking was that I could drink a liter of German beer in 30 minutes so I should be able to handle the formula. I sometimes can't and my GERD acts up. BTW I use 2 cans of TwoCal HN for morning and noon, and 1 can of TwoCal plus 1 can of Jevity 1Cal with fiber for evening. The former is rather dense and slow and the latter can run a lot faster. You can adjust the speed with your tube clamp or the roll clamp on the bagg set up. A pump drives me crazy it is so slow.
DG squaomous cell carcinoma in neck tongue and palate 4/98; T4N2CMO bi.lat. neck disect. 7/98; Max dose Rad 8/98 to 9/98. H&N Cancer free. G-tube placed same time as disection. Changed to button after 2 years.DynaWrite Severe trismus and unable to speak clearly. Use an iPad .
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | [quote=walknlite] I have just been letting it for through the syringe using gravity and it doesn't take 5 minutes. [/quote]
Everybody is different, this is the method I used all the way thru and I was doing 4 cans of "formula" plus 8 oz of water or Gatorade for each "meal" 3 times a day.
So I guess to properly answer your question, whatever is comfortable for you, and if one way doesn't work well, that ask your docs about another alternative. The goal is still calories, calories, calories and the more Protein the better !
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks everyone. You have all been very helpful.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Angelia,
I was a big guy and I could do only a can of jevity. I had to have a "2 am: feeding every night so I could get enough in each day. I also needed Morphine at 2 am so it was dual purpose. Just give your self multiple 2oz feedings, whatever keeps you comphie!
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Steve Oh yeah, I remember those 2 am pain pill drills. Then I would also post on OCF making it a triple threat Charm 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
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