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Charm:

What is VitaMix and where do you purchase it? Does it come prepared, or do you have to mix it?
Thanks,
Julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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JulieAnn: sorry for any confusion. VitaMix is the number one rated Blender by Consumer Reports. It is also the one recommended by the Gtube listserv and the Yahoo Blended diet group. With the Vitamix, you can puree real food like vegetables, tofu, even whole apples (skin seeds core etc) into a mixture smooth enough to put down your feeding tube. We always ate a very healthy diet and since the canned formulae like Jevity or even Ensure Plus are just cornmaltodextrin and corn syrup solids, they are really the bare minimum to sustain life. since I will have a PEG for life now, I want to eat healthy. I wish there was a bottled or canned formulae that was healthy but no such luck
Here is a link to the post I did on how to order a Vitamix blender for over a hundred dollar discount if you have a doctor's note of medical necessity. Vitamix medical discount


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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Thank you, Charm:

When I looked it up before I asked you, all I saw was the blenders, so decided to ask you. I, too, cannot stand the pre-mixed sugary canned stuff, but they did serve a purpose for a while. Even after two years, I still have trouble swallowing food, so I'll probably do like you. Thanks for the link. I also have been told by two doctors that I am allergic to soy (which most pre-mixes have), and then again by another two doctors who say I am not allergic to soy. I guess I'll shoot for one more and then it'll be three against two LOL. I have no idea which lab they use to get two different diagnosis.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Regarding the original topic of this post....

My first peg tube lasted 1.5 years. Second one lasted 1.5 months. It was somehow dislodged and replaced during my extended hospital stay. Now my third peg tube is failing, it has sprung a couple leaks along the side. Age of the third peg tube is only 3 months. I will try to repair it with liquid bandage or if that fails then crazy glue. Anything to avoid another surgery, or at least prolong it.


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
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The team at HUP told us that replacing Clark's PEG was an outpatient procedure in Interventional Radiology � CT guided placement. We haven't done this yet as his tube has held up fine after 2 years. The only issue was that the cap fell off and now he has a "Y" extender attached. Works fine for now. He did not want a surgical procedure for a replacement either.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Christine

What a pain. I just got back from Georgetown Hospital where I had to get my third PEG tube. The second one only lasted nine months then started leaking badly. You may want to also try tightly wrapping black electrical tape around the tube section that is leaking. That worked for me from Saturday until today.
They have now scheduled me for regular replacement of my PEG every six months as that is what they are finding is needed for long term PEGs. The "surgery" was very brief and I did get an even bigger PEG - a 16FR this time.
You really don't need this hassle.
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: Mar 2008
Posts: 3,082
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Yep, I use and will still use the Y extender as a "cap" since the PEG tube does not have an anti-reflux valve like the "button"
Two years is an amazingly long time for a PEG to last. I am on automatic six month replacement now.
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: Nov 2005
Posts: 1,128
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Charm, I have the Mic-Key button in 20Fr, but the problem is that while the tube is big, the fittings on both ends, esp the disconnect fitting, are much smaller. It is a constant battle with my crushed meds and the small orifices that block even with powder. After a while, the anti-backflow valve stops working, so you have to put your finger over the hole and put the plug in to keep it from leaking.

My Mic-Key has to be replaced every three months, because of expected balloon failure, but the replacement is easily done in Doc's office. Worse, the dang fitting tubes for it quickly get work-hardened and are hard to block with the clamp. Replacement tubes are expensive, apparently not covered by Medicare and no better (The makers recommend weekly replacement -- Not for me at $15-30 per tube!). I am making do instead with some Y-fittings on the tube from the standard kind of PEG, which the nurses keep replacements in the office. The only big advantage with the Mic-Key is that there is less movement of the tube at the stoma, so less granulation occurs that needs to be debrided (Cauterized with silver nitrate sticks).

At some point, I expect to go back to a regular PEG, installed with an endoscope, but I will modify it to have a right-angle fitting very near the stoma. One of the Mic-Key tubes has that and it is much less disturbing to the stoma even if I keep it on for days.


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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I was able to hold out til 1/30 then had it replaced. It was easy, done as out-patient in the radiology lab. I barely felt it, so it was definitely an easy procedure. I have the same one again 20fr G tube.


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
Joined: Mar 2008
Posts: 3,082
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Pete

Thanks for the info which verified the opinion of the most recent interventional radiologist. When I explained that I wanted to cut my Jevity in half and go with Vitamix meals, he alerted me to the exact same valve problem. He pointed out how the valve clogs and is even smaller than the first 12FR tube I hated. He thought that it would complicate all the pills and powders I currently syringe. So I agreed to not get the button.
Instead he put in a regular 16 FR PEG tube also made by Mic-Key which has a balloon on it to hold it in, along with a circular rubber protector. I am experiencing granulation but my ENT just gave me a script for silver nitrate sticks which I will drop off at the pharmacy. I like the closure on the new PEG and it does not clog like my old ones.
Read the Roger Ebert article in Esquire that Brian posted on the OCF news site as well as in the coping/anger forum - very moving.
Charm

Last edited by Charm2017; 02-25-2010 07:34 AM. Reason: TYPO

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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