Should I get PEG tube?

Peg Tube

Michelle, you will hear so many pros and cons about this one.  Here's my input.

I had a feeding tube and still lost 35 pounds and can't imagine what I would lost without it.  I didn't have 35 pounds to lose.  I met with a nutrionist and she outlined a plan (Calories, protein, fiber - very important) to use with my tube.  I had to have my tube replaced one time as the balloon that is inflated and actually holds it in your stomach became leaky, wouldn't hold water to keep it in, so it had to be replaced, which was really not a big deal.

You can hydrate, get nourishment and take your meds through the tube.   It will get really hard to swallow pills as you progress, or at least it did for me.

with the Peg, I had a little discomfort but nothing I couldn't manage with.   If you decide to get one I'll let you know what i did for the discomfort that really helped.   The challenge is at night keeping it close to your body but not tight to your stomach.   Basically the same challenge in the day time in that I didn't want it flopping around (it stick out from you stomach 8 inches or so) so I felt better having it "protected" and not just hanging loose. 

I was nauseaous and threw up every day of treatment.  My issue was a horrible gag reflex so brushing my teeth, using my floride tray, even talking would cause me issues.  The Zofran didn't help as mine was due to the gag reflex and my mouth/throat were so inflamed/swollen nothing really helped.   You have a differnt chemo than me (i had Erbitux) but my issue was radiation and you are slowly but surely plowing through them.   You still need to sip on water every day even with a feeding tube or you can actually forget how to swallow and that is a very bad thing.  Always sipping on water helps.

 If you do decide to get the tube, you might want to check on a pump to control the flow into your stomach.  there are 2 ways to feed, 1) gravity and you put the food in the bag and flows with gravity, 2) a pump that controls the flow.   The gravity method for me was way too fast and i felt nauseaous all the time so I had to switch.  Going slower (feeding slower) helped but I still had issues due to the gag reflex but I could take the food at a much slower pace which really helped.

Good luck with this.  It really helped me and I'm not sure what I would have done without it.  That being said, I was ready to get it out when i could and i had it removed 3 weeks after treatment.     They want to make sure you can gain or at least stay stabalized with weight before they remove it.

 

Alll the best,

Keith

 

PEG

Hi Michelle:

Good for you making it half way through your treatment.  Hang in there.  I know it doesn't seem like it, but in a few months it will be a distant memory.

For me the feeding tube was invaluable.  It is the only thing that kept me from becoming a skeleton.  Its my understanding that the more weight you lose the weaker you will get thereby making it harder to bounce back from the treatment.  You still have three more weeks and you can lose a lot of weight in that time.

My tube hurt for a few days and I was freaked out about putting anything in it the first week.  After that it became my best friend.  I used it to put all my meds in and it really kept me hydrated.  Water was never a problem once I had the tube in.  My experience with the tube was a good one.  I also found that I wasn't eating normally for a long time after treatment.  A few months.  I would have weeks where I was really nauseas and it was a life saver not having to worry about eating.

I inject my food directly into the tube with a syringe.  Not sure if that will work for you since your already feeling queezy.  I am six months post treatment and only this month am ready to have the tube removed.  I was panicked about losing too much weight.  I only lost 9lbs.

P.S.  If you have a good blender you can put a lot more than ensure in there.  

Good luck.

Shirley

To PEG or not to PEG

Different people feel different about getting a PEG, I went through both of my treatments without a PEG, I lost right at 90lbs that I have never been able to put back on. After I lost the ability to swallow I got a PEG and man I wish I would have gotten a PEG during treatment. I had a few problems getting use to it, just like getting married, now me and Mrs. PEG are doing well and plan to stay together for life.

 

Tim Hondo

Peg tube was the right choice

and as others have said, it was a life saver.  I had it installed before I started rads and kept it flushed.  I started using it for some of my calories in week 2 and by the end of week 3 I could barely stand to swallow water let alone any calories. 

I had nausea problems but as with others, mine was due to the thick mucus issues.  I'd start to cough and couldn't stop, I'd gag and wind up vomiting despite multiple anti-nausea meds. 

Getting it put in was fairly simple, it was a little tender for a couple of days and keeping the free end under control was a challenge until my oncologist's nurse gave me a package of 'spandage'.  it is essentially a continuous roll of knitted stretch/bandage that you cut to lenght and wear like a tee shirt.  Keeps the tube neat and in place, no issues with tape either.

One word of caution, if - when using it - you need to cough or sneeze, clamp the tube first or you'll get a shower of whatever you've been putting into it.

It is your choice to make but I'd get it.  My RO said that before feeding tubes, most head and neck patients died because they's starve to death! 

Kudos to the people who can keep swallowing through the discomfort of rads, but I'll be proud to say that I had one and now some two + years out, I'm doing just fine

Shell_7801 said:

Rad Onc said no

He talked me out of it.  Told me as long as I can get the Ensure down he is happy.  No PEG.  Said I would still be nauseaus and would not have any more energy so I said okay.

I want more energy but if PEG won't help with that then I'll continue to slowly sip Ensure and pray it stays down.  20 rad down, 13 to go and I'll feel better then.

 

He said after one month I'll be 80 percent back to myself and that I'm doing great as I have not sores in my mouth.  

Still waiting for marijuana card but have found that it does help me sleep and it helps with neausea too.

Peace out

M

 

My rad onc said no

to me at first.  He said the same things that your doctor did.  I spoke to his associate and he was SHOCKED that a PEG wasn't offered to me.  I could keep NOTHING down.  I got a PEG the next day and it GREATLY helped my energy level.  I was getting nourishment and that's what my body needed to have energy to continue treatment.

Peg tube

Hi Michelle,

 

I was very very surprised that you are part way through your treatment and considering a peg ? I am confused, here in Australia the staff told me all this before my treatment started. They said they would not be able to put a peg in during treatment, was not recommended as your energy levels are low and they just dont do it. Didnt you drs give you this option before treatment started ?

I still have my peg, its been 3 months since treatment. I have lost 29 kgs , which is 63.9 lbs to date and still seems to be dropping. 

It was a godsend the peg, but now Im trying to use it as little as possible, would like it out now. Have started eating but have my good and bad days, today was a bad day. Fo some weird reason I couldnt swallow food propely , just wouldnt go down. I had my pet scan today and get told my results next tuesday.

I have just never head of anybody getting a peg midway through treatment, as it takes a while to adjust and having treatment on top , really puts a strain on your body.

But if you are having touble getting food down and your drs seem ok with adding a peg now, I would highly recommend it. 

 

Robyn

Robyn64 said:

Peg tube

Hi Michelle,

 

I was very very surprised that you are part way through your treatment and considering a peg ? I am confused, here in Australia the staff told me all this before my treatment started. They said they would not be able to put a peg in during treatment, was not recommended as your energy levels are low and they just dont do it. Didnt you drs give you this option before treatment started ?

I still have my peg, its been 3 months since treatment. I have lost 29 kgs , which is 63.9 lbs to date and still seems to be dropping. 

It was a godsend the peg, but now Im trying to use it as little as possible, would like it out now. Have started eating but have my good and bad days, today was a bad day. Fo some weird reason I couldnt swallow food propely , just wouldnt go down. I had my pet scan today and get told my results next tuesday.

I have just never head of anybody getting a peg midway through treatment, as it takes a while to adjust and having treatment on top , really puts a strain on your body.

But if you are having touble getting food down and your drs seem ok with adding a peg now, I would highly recommend it. 

 

Robyn

Agreed

Hi Robyn:

I totally agree with everything you said.  I however have heard of many people getting the PEG midway because they get so weak and malnourished they have no choice.  It just makes sense that if possible you get it before treatment begins when your system is not yet compromised.   

It frustrates me to think that when the body is already under attack from radiation and chemo that proper nourishment isn't the highest priority for patients.  Food is our bodies fuel and it is so much harder for the body to fight disease and recover when it hasn't got proper nutrition.  I have my PEG tube six months post treament.  I'm getting it out in a few weeks.  Like you, I had a few months of off and on ability to eat.   I am so thankful to have had the PEG.

I bet her RO would have a tube if he were going through this treatment.  I don't understand the down side to getting one.  You can always elect to swallow as much as you would like, but wouldn't lose so much weight in the process.

P.S.  How are you doing?  At six months i'm doing pretty well.  Back to work part time.  I'm only down 5 pounds now from my original weight.  I still can't taste food and really look forward to getting that back.  Some dry mouth and mucous but nothing I can't manage.  That first PET scan is scarey, but nice to get out of the way.  My second one is scheduled for March and i'm not looking forward to the nail biting stress of waiting for results.

Shirley

donfoo said:

JAMA published report - No PEG is better

Hi Michelle,

You need to know your doctor is on the correct side of science and best practices when it comes to long term restoration of oral intake after OC treatments. Finally, I found a real study prepared by MDA, most agree one of the best cancer facilities in the world.

The report clearly shows the best return to full eating and swallowing is from those who continue to full intake orally and without using a PEG. Swallowing exercises are also included in the study so those without any PEG and did swallow exercises were the best class, followed by no PEG use and no excercises. Partial intake PEG was next. So swallowing water counts as partial. The worst outcomes were those who could not intake anything orally by end of treatment.

Personally, I find it very disappointing about the unbalanced representation of PEG vs noPEG. I totally get that if you just can not eat then get a PEG, don't starve. But doctors who just order one without any sign of intake issues are not doing the right thing based on science. It is just hard to see such unjustfied bias for those who seek knowledge.

Report

JAMA Otolaryngology–Head & Neck Surgery

• 
  
  Original Investigation November 01, 2013

  Eat and Exercise During Radiotherapy or Chemoradiotherapy for Pharyngeal Cancers: Use It or Lose It

  PDF
  
  
   
  
  Katherine A. Hutcheson, PhD; Mihir K. Bhayani, MD; Beth M. Beadle, MD, PhD; Kathryn A. Gold, MD; Eileen H. Shinn, PhD; Stephen Y. Lai, MD, PhD; Jan Lewin, PhD
  
  TOPICS: radiation therapy, diet, exercise, gastrostomy, deglutition, radiochemotherapy, swallowing therapy, pharyngeal cancer

  JAMA Otolaryngol Head Neck Surg. 2013; 139(11):1127-1134. doi: 10.1001/jamaoto.2013.4715

  
  

Thanks Don

Thank you for posting the articles Don.  I was getting a little concerned because my RO has never talked about a PEG with me.  I go to local cancer center and have completed 23 of 30 radiation treatments (no chemo).  I do see the nurse praticiner,  my RO, a physical therapist and dietitian weekly.  I have swallowing and neck exercises.   Still swallowing liquids and soft food with the magic mouthwash first.  I am looking forward to the day when I enjoy eating and drinking again.  It was good to read the articles you found, it is so easy to second guess our treatment.   

~Sonja

I lost 120 lbs (8 and a half

I lost 120 lbs (8 and a half stone) through my cancer journey. And that was WITH a PEG! (Mind you, I was an enormous 22 stone before my diagnosis!)

Without the PEG I would be dead now. And that's not being melodramatic.

My mouth was so painful, I had Grade 4 mucositis with necrosis, I couldn't even open my mouth, let alone take in water.

It's not just about nutrition either, what about your pain relief? And the antisickness medication? You have to think about how you'll get that in.

Most people (my nurse advised me) do not get mucositis that badly, I was unlucky. But it's still a battle for many people.

I had some considerable pain in the two days after the PEG was fitted, however, it was essential.

In terms of nausea, have you been given Ondansetron? It comes in an orodispersible format - it will dissolve on your tongue, OR if you mouth is too sore for that, it can be dissolved in a small amount of water and squirted in through the PEG.

Liquid Domperidone is another antinausea medication. Both were equally as effective, I found. It helped me keep all my precious Ensure down.

I do hope you start to feel better soon. You will though, I promise, you will feel better after all this x x x

say yes to a peg pre-treatment

My husband had a peg in place before treatment started.  With the goal of continuing oral nutrition as much as possible, we felt it was an insurance policy.  Placed during an outpatient surgery visit, had we waited after treatment started we were told it would mean a hospital visit of several days.

Jim never used his peg and consumed 3500 calories at a minimum every day.  No weight was lost until about 6 weeks post-treatment.  At that point, despite maintaining the high calorie count and increasing some days, Jim lost 60 pounds.  The radiologist told us it was from the continuing effects of the radiation.

I was the one who insisted on the peg: even though we never used it, I continue to believe it helped us to know we had a backup plan for nutrition and hydration as the radiation continued to do its work.