#97834 06-21-2009 08:49 PM | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | I haven't seen mention of "Fibersource HN" as a tube food. Is anyone else here using that? John's RO rx-d a whole bunch of it, but it seems to be lower calorie than some of the things I see mentioned here. It has 300cal per 250ml can and he can't very many down in a day b/c of nausea (sometimes worse, sometimes not so bad) even with the antinausea meds (Zofran, Reglan, Ativan). Is the high calorie Carnation useful in the tube, or only used for oral intake?
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I use Nutren 2.0 in my PEG tube. It's made by Nestle, like VHC, but has 500 calories per 250 ml can and is covered by Medicare. Apparently Medicare considers VHC to not be a tube food.
Nutren is also supposed to be drinkable, but when I previously used it I had to add Nestles Nesquick to it for flavor (Addl 60 calories, so that brought it up to VHC.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | We used ensure, calogen, and scandishake through the tube, and loads of water.
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 |
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jul 2009 Posts: 16 Member | Member Joined: Jul 2009 Posts: 16 | We've been using Jevity 1 cal which was prescribed by the VA. 237 cal per 8 oz can, 10 per day (totally on the tube) which has been perfectly balanced nutrition. When we were on vacation I shipped 80 cans on the plane but we started to run out so we bought some Ensure plus but the sugar content is so high that he started having reactions (whole nother issue)! I had asked our nutritionist about using the Carnation VHC but she said it was very thick consistency and may be difficult to put thru the tube. I had also read (on another board) about an additive you can buy at GNC called 'Maxx Muscle' I think...they said you mix it with 2 glasses of milk and it's 900 cal and 50 gm of fat...not sure of the rest of the components.
Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved
| | | | Joined: Jul 2008 Posts: 21 Member | Member Joined: Jul 2008 Posts: 21 | My husband was very very thin before all of his treatments and lost 20 lbs that he has not been able to put back on yet. His tube feedings are 7 cans of Jevity 1.2 per day, but they are changing him to Jevity 1.5. He is adding cream cheese, sweetened condensed milk and peanut butter blended with his Jevity both for bulk as well as for added calories and fat. The nutrisionist I spoke to this week said to add some Olive oil also. She did say that the cream cheese probably was not enough calories for the bulk, but Chris said he likes it.
CG-Husb-Diag 03/08 T4N2cM0 Floor of Mouth SCC: 5/21-Mod Rad neck dissecton, remove mandible,floor of mouth, suprahyoid muscile, part of tongue. Bilateral +nodes. Reconstruct w/fibular (failed). 5/25-Pec flap: 6/15-infection from fistual: 7/31-Rads-6 wks. Chronic infections. HBO starts 1-26-09
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Karen, that sounds like it might actually be tasty. Thats a great idea to add the cream cheese and peanut butter. It covers the taste and is smooth but at the same time will thicken it up. Great idea!!!!
Peanut butter is high calories. I add about 1/2 cup to my milkshakes. Im out of treatment about 22 months and still havent gained weight no matter what I eat. It seems to take forever to get back on yoru feet from this awful disease. ChristineSCC 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 | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Karen, the GNC was 1850 calories and it is called Weight Gainer
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | There is also a Muscle Milk made buy cytosport. It is 300 calories per serving but is mainly for muscle gain. This you just mix 2 scopps of with cold water.
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have one more for you. This one is calledQuick Gainer from Cort-Avert. There are 690 calories in a serving and 50 grams of High- Biological vsalue Premium protien per serving. It's an anti-cvatabolic mass complex. That should about cover it. geez, I actually made it without my normal typos.
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
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | Thanks for all the input! The main problem is the persistent nausea/GERD despite the meds for that (which help but still). Thank goodness he has the PEG, though, b/c otherwise nothing would be getting in!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | mgmichael,
Have you mentioned the nausea to the docs? I had to try a couple of things before mine was under control, but what a difference when we got it right! There are lots of drugs out there for nausea, the trick is to find the one, or combination, that actually works.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | They gave him Compazine to start, then Zofran, then added Reglan and Ativan. He hasn't vomited, just never feels very settled in the belly!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | That's exactly what I had, no vomiting, but a really sour, icky belly which made it really hard to eat. Zofran and the others did absolutely nothing for me. I ended up with a combination of Emend and Aloxi, which worked beautifully.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2009 Posts: 75 | HI;
My dad had the same problem. He had terrible nausea and although he had a PEG he still could not keep any food down. We tried all the medication that others mentioned and even had a GI test to make sure nothing was wrong with the PEG. Nothing was wrong and the nausea passed. He did end up in the hospital several times with dehydration. So, force the water, even if he cannot tolerated the food.
Good luck, Boston
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | Joined: Jun 2009 Posts: 24 Member | Member Joined: Jun 2009 Posts: 24 | I started with Fibersource HN, but being diabetic, it really caused my blood glucose levels to go through the roof. I now use Glucerna 1.2, and my BGL has been normal since I made the switch. The PEG has been a big help in my recovery. I also had the nausea (and subsequent dehydration) at first, but it diminished within the first few weeks post-tx. Hang in there... it gets better.
Dana, Male, Age 52, DX 11/08 SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | Joined: Jun 2009 Posts: 24 Member | Member Joined: Jun 2009 Posts: 24 | Oh, forgot to mention that the Glucerna 1.2 is 285 calories per 8 oz (237 mL)can.
Dana, Male, Age 52, DX 11/08 SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I was definitely Linda Blair's dad!!! I threw up so much that I had what I'll call a gag reflex for many months post Tx meaning everytime I ate or drank something I immediately had this urge to toss cookies. I think my bout with nausea was by far the worst part of my Tx followed closely by Mr Nausea's friend and companion, Mr Constipation.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | That doesn't sound fun at all.. even for Linda Blair's dad!!! Does the CIB VHC work well through a PEG? My Mom's getting her PEG tomorrow. I copied down the things mentioned above to use with a PEG too. Thanks, everybody - that will come in handy :o)
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I guess it depends on the size of tube because I have heard some say they used it and some say they were told not to use it because it was to thick but you can always cut the VHC with some milk to make it thinner.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Watering down the feeding formulas will make them easier to tolerate. Slow down the feed rate and it will help too. ChristineSCC 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 | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I've had good luck with Carnation's Nutren 2.0 (500 cal/can) and it's acceptable to Medicare and insurance. Basically same as VHC, by same company, but accepted as a PEG food. It's also drinkable, but tastes better supplemented with Nesquick (which brings it to 560 Cal/can, same as VHC).
Four cans by PEG give me 2,000 calories.
The higher the number after the name, the thicker it will be, so PEG size can make a difference.
BTW, the number following the food name is the roughly the number of calories per ml of the drink, so a 1.5 drink is 1.5 x 250 = 375; 2.0 x 250 = 500, etc. If VHC had a number, it would be 2.24.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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