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#147831 - 04/06/12 12:00 AM Re: Odds of needing a PEG during treatment [Re: vet tech]
BuffaloFan Offline
Contributing Member (25+ posts)

Registered: 04/05/12
Posts: 30
Loc: Rochester NY USA
I have a PEG tube and rarely use it. I had no choice due to issues with my teeth (non cancer related). I found I can eat noodles with some sauce, pudding, Ice Cream and yogurt. I have not gone through a full week of radiation or Chemo yet so it may change.
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

#147841 - 04/06/12 03:14 AM Re: Odds of needing a PEG during treatment [Re: BuffaloFan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9427
Loc: PA
Push yourself to eat everything now. Your sense of taste will eventually change and something that you once loved will taste very different. Make sure you eat alot too. Zero pounds lost is the doctors goal for patients. Most of us tried but still lost a considerable amount of weight. So if you are a thin or average sized person try your best to pack on some pounds. Hot chocolate with half and half and marshmallow creme along side a piece of cheesecake should do the trick smile
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#147844 - 04/06/12 04:02 AM Re: Odds of needing a PEG during treatment [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Sadly it will change Ben if those of us who do well with the treatment - by week 3 nothing is palatable and it gets harder going down. Good luck with things.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

#148777 - 04/26/12 04:40 PM Re: Odds of needing a PEG during treatment [Re: Cheryld]
EllEll Offline

Registered: 07/20/10
Posts: 10
Loc: Oklahoma
I did 6 weeks of radiation and chemo. I did not have a feeding tube put in. My doctors said if I lost 10% of my body weight, they would put one in. That would have been about 12.5 pounds. I lost 9 pounds. I was determined to keep my weight up. I drank Ensure, Carnation Instant Breakfast (which I still drink for breakfast),protein drinks etc. My husband made many trips to the grocery store trying to find things I would eat. He made lots of shakes and malts, adding fruit to them for nutrition. He would make meals for me and I would sit at the table trying to eat at least some of it. Sometimes it would take me awhile to get it down, but I did. I am glad I didn't have to have the feeding tube - just one more thing to deal with. I did everything the doctors told me to - using salt & soda rinses, head & neck exercises, another rinse for sores and dry mouth etc. Some of my taste came back about 6 weeks after radiation. I'm now two years out and can taste most things although some of it doesn't have as strong of flavor as before. Hang in there, it gets better.
SCC on right tongue T2N1M0 Non-smoker, non-drinker age 55 female. Partial glossectomy April 2009,July 2009, Jan. 2011, lymph nodes removed, radiation & chemo 2009

#148794 - 04/27/12 01:33 PM Re: Odds of needing a PEG during treatment [Re: EllEll]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hey you sound exactly like me. Ellell - smile it does take a while - And despite the trauma of the time - I am very happy i didn't have to use the peg!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

#149422 - 05/11/12 06:02 PM Re: Odds of needing a PEG during treatment [Re: Cheryld]
phrannie Offline
Contributing Member (25+ posts)

Registered: 05/07/12
Posts: 31
Loc: Montana
I got the PEG before I started treatments for no other reason than I weighed 93 lbs...I had no weight to play with so both the radiologist and the Oncologist were all for it. I also thought I probably would be miserable enough without even a minor surgery if I waited. I'm now at the end of week three of rads, still swallowing fine, eating still tastes fine. I've "practiced" with my tube, just to get a feel for it, but I don't need it yet. If it ends up I never need it, great.....if it ends up that I do need it, it's already there for the using.

I had horrible cramps (just about as bad as labor pains) for 3 days after placement....having it put in wasn't as easy peasy as I was told it would be...

Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.

#153675 - 08/26/12 12:54 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
JT2 Offline
Contributing Member (25+ posts)

Registered: 05/19/07
Posts: 39
Loc: White Rock, BC, Canada
This is a late post, and a lengthy one too, but thought I'd add my comments in hopes it might add further insight into your dilemma.

When I was first diagnosed and the treatment plan decided, I set 2 goals; one: to make sure I received all 3 chemo treatments (having heard that many patients cannot handle te severity of cisplatin, and the thought of only getting 2 of 3 treatments scared me!), and two: not to get a feeding tube!

I don't know why I was so adamant - perhaps it was fear - but I was determined. It went really well for me right up to the last 5 radiation sessions, and with those and the 3rd chemo session right around the next corner, I was sure I was going to make it without having one installed.

And then I somehow lost 8 pounds in just a couple of days. It was the Thursday before labour day, and I was scheduled to book into the hospital on Monday night for chemo session #3 commencing Tuesday, just 4 days away. My RO and I had made a deal and shook hands on it a few weeks earlier whereby if my weight fell below a certain level, then I would have a feeding tube installed.

Now all of a sudden, I was 8 pounds under the minimum weight, and I remember so clearly her words when she said that it was my choice, however on Monday - 3 days later - if I had NOT regained those 8 pounds and was still below the minimal weight level, then she would cancel chemo session #3 just as sure as God made little green apples!

I went home and stewed about it. Already reduced to drinking my own milkshake concoctions due to the pain swallowing, I knew there wasn't much chance of regaining the lost weight, and it boiled down to which of my 2 goals was more important to me?

Luckily, I made the right decision and had the tube installed the following day. They kept me in the hospital and made sure I was heavy and healthy enough for the final chemo treatment.

She knew how important that 3rd treatment was to my mental preparedness, and knew exactly what button to push to gain my compliance.

So how did it all turn out? What nobody prepared me for was the discovery that the pain didn't didn't stop, or ease-up for that matter, even though the radiation treatment was over! In fact, the pain continued to build for the next month or so before showing any sign of abating whatsoever, and had I known that was going to happen, there would not have been any argument from me.

I must have jinxed the process along the way because of all people to become 100% feeding tube dependent for life, why did it have to be the guy who protested it so vehemently in the first place?

The combination of chemoradiation and surgery resulted in my ending up with extreme xerostomia (dry mouth) due to zero saliva gland function, severe trismus (lockjaw) with only a 13mm range of motion between my upper & lower jaw, and reduced epiglotis functionality which meant I could not swallow anything other than fluids.

Yes I could swallow soups and other liquid nutrition, but it would still require me to have a feeding tube in order to maintain sufficient daily caloric intake. That's an awful lot of soup to eat every day - gallons of the stuff - and how long would it be before even the thought of another spoonful of soup would turn me off eating altogether?

In view of having no saliva to fight food related bacteria and almost zero access to perform routine oral hygiene, I decided it was one of those "all or nothing" situations, and with great reluctance decided I would rather retain my dentition as long as I could, and forego any further oral feeding in order to minimize the pace of dental decay. That meant I must rely solely on my feeding tube.

That was 7 years ago, and I haven't swallowed a single morsel of food orally in all that time. Things went really well for me and my tube until only recently, relatively speaking.

Shortly after having it routinely replaced in January of this year (usually every 9 - 12 months it is replaced), I started to suffer bloating and nausea mid-way through a feeding, and it became a horrific event to complete a meal that took 2 hours to feed and another 2 hours to recover from.

Finally I returned to the hospital to check it out, and discovered that the tube had moved from my stomach into my duodedum which was the cause of the debilitating nausea. They replaced that tube and everything was just fine for about a month. Then it happened all over again, and the tube was replaced for the second time in as many months. A few weeks of normalcy, and then wham, the tube is replaced again!

Believe it or not, I went to bed one night and woke up 2 days later in the emergency ward suffering a very severe blood infection on top of the fourth bout of pneumonia since December 2011. One full week in hospital, a couple days at home, and I'm back a few days after that for yet another tube change.

At this point we are all frustrated and pretty well fed up with feeding tube drama, and I inadvertently learned from the Angio-Tech who was assisting the Radiologist that there was an alternate type of feeding tube apparatus that I could select if I was so inclined.

It is manufactured by Kimberley-Clark, and comes in 2 basic styles: one a similar looking external tube and connector/valve arrangement to what I was used to, or the other, a low profile unit about the diameter of a half-dollar.

Where these two units differ is internally - how they were kept in place. Instead of a foot or more of coiled tubing in your stomach, these new styles are retained by a small balloon that is inflated on the other side of the abdominal wall and that is what keeps them in place.

No more gauze, stat-lock fixation devices, or Tegaderm bandages in my future with any luck! The bonus is being able to take a shower without wrapping myself in five or six layers of saran-wrap, or being able to go swimming without worrying about seepage or any feeding tube consequences.

I understand they have been available for a few years already, and why I didn't learn of it earlier is a mystery to me. And so, here I currently sit wasting away until I receive my first "Mic-Key" low profile device and have it installed, hopefully within the next week or so.

Until then, I'll try to cope with the volumous sweating, bloating and nausea that accompanies each meal and consumes about 12 of the 24 hours I am alloted every day.

I think it is much wiser to simply get the thing installed just in case you find it necessary, as most patients do.

Good luck and good health in the future!

Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...

#153678 - 08/26/12 01:20 PM Re: Odds of needing a PEG during treatment [Re: JT2]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA

As Christine pointed out, the OP decided to get a PEG back in February, so I'm going to just stroll down memory lane with you. A foot of tube inside sounds like you have a combo G/J tube or a J tube instead of a plain old PEG? either way, G tube, or J tube or G/J tube, the low profile versions are definitely the way to go. Personally, I prefer the AMT over the Mic-key since the AMT are better designed and have shaped the balloon more like an apple so there is less leakage and granulation tissue.
I was equally determined the first time around not to get a feeding tube. My RO and MO had the weight concerns but we could not agree on what the minimum weight was.( I was stubborn that my marathon fastest time weight of 126 lbs was fine but they kept using my 177 lbs at DX as the baseline so they drew the line at 140 after first trying for 157) I just said "we will see" and never shook on it. I created a firestorm here on OCF when I first joined by bragging about how I put lead weights into a vest and wore heavy combat boots both of which added about 14 pounds onto my weight.
But I never had dehydration and was eating and drinking after TX faster than anyone. I was the most contentious of the PEG war combatants until posters stopped patronizing and ridiculing the decision not to get one. I went overboard however in my defense and ended up as bad as the Pegophiles.
Today the discussion is fair and evenhanded. Oncology Management principles and most textbooks acknowledge that the doctors still are deeply divided on prophylactic PEG placement.
You really made me laugh (and I need smiles right now) with your post - especially the part about "jinxing". I'm right with you now, it's been three and half years of total feeding tube and it's never getting better. Sorry to hear about your placement issues. With the button or low profile, I now have my wife change my tube and that works a lot better than the doctors ever did. It's sad that you were not told of this option earlier. We've had lots of discussions here on the low profile tubes. I'm a firm believer in them for us tubies.
Keep the faith

Edited by Charm2017 (08/26/12 03:40 PM)
Edit Reason: tube type typos
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

#153682 - 08/26/12 03:33 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
Kelly211 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/02/09
Posts: 618
Loc: Michigan
I made it through two radiation treatments without the PEG. Unfortunately, after the second reoccurrence and treatment, I was no longer able to eat solid foods; the tumor hat eaten two key nerves that help swallowing and such. I have paralysis or partial paralysis on the right side from my soft palet, tongue, down to my esophagus. When I swallow, about 5% of what goes down finds its way into my lungs.
After that second round of treatments I was still eating fluids orally (no solids) until I came down with pneumonia. At that point I went in and asked for a PEG. I have been on one now for about 9 months.
I read about the Button that Charm got and immediately got with me doctor to see if I could get one of those. She said sure, ordered one and had it in place during a brief office visit about a week later. I have had that in place now about 6 months and love it. I have a model made by Boston Scientific that has an ovate shaped balloon in the stomach. I have had no problems with it and can now enjoy the summer with thin shirts that do not bulge, hot tubs with the wife, and brief swims in the lake with my son.
My doctor said the Kimberly Clark design is bit dated and likes the newer model by Boston Scientific. Ask your doctor for his/her view on the different options available.
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR

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