Feeding tube or no tube?

In my case the tube was put in before treatments started, and I got a med port as well. Even with the tube I went from 235 to 141 lbs, partially due to an intolerance for the medical formula. I will never be able to tolerate vanilla flavoring again in my life. I am 3 months post treatment and beginning to work on rehabbing my swallow, I have been pretty lucky and was able to retain at least a weak swallow through out treatment, however I went probably 8 weeks with only water being swallowed. My older sister was diagnosed about a month after I was and she continued to swallow through out, and she is way ahead in recovery than I am, she just had both her med and PEG tube removed yesterday. I will need mine for some time still, however I am primarily using it for medications, working with a soft modified diet. My vote is yes on both tubes, even if you dont use them, it will prevent having a surgical proceedure or nasal cannula during treatment, when you will have the least tolerance. Best wishes either way.....Keep us posted ...

Jim

D Lewis said:

Got the tube.

Both my Oncologist and Radiation docs said that they didn't think I would need the PEG. Fortunately, I had educated myself by reading here.  About three weeks into the treatment it became pretty clear that, even though I was sipping and swallowing water just fine, it was too much of an effort to force down all the nutrition I needed.  I demanded a PEG. They got me one. I used the pump, because it was easy and relaxing, and I was able to use it almost continuously on slow flow mode. Stopped losing weight, stayed hydrated, and I was pretty much able to completely take care of myself. I didn't have to involve others in my feeding regimen. A few weeks after treatment ended they popped it out for me.

Deb

Having the tube put in was very empowering, during a time when I didn't feel as though I had much control over what was going on. It wasn't about whether or not I thought I could make it through without one, forcing down thick, tasteless concoctions that other folks had to whip up for me, worsening an already painful mouth and throat, fretting about my weight every day... I could probably have made it through.

Feeding became one of the most important things I could still do for myself.  I was so proud when my weight turned around, and every time I went back in to the doctor, I had regained a pound or two.  I was hydrated, I had energy (of a sort), I knew how many calories I had taken in, and at the same time, I could still demonstrate that I was swallowing liquids.

Deb

boardwalkgirl said:

Well I went in to my meeting

Well I went in to my meeting with my radiation oncologist saying I was not gettting a feeding tube, but he was pretty insistent that I have if placed before treatment started. His reasoning was not to postpone treatment while I was getting it placed later and because the surgeon would have to scope down my throat to know where to place it,and my throat could be swollen and very sore by then so I caved and gave in. I had weight to lose but I am glad I had it. I ate something by mouth every day but 1 the whole way thru and usually ate 3 times a day, not a lot but something so I wouldn't lose my ability to swallow. But I did use my feeding tube probably starting a couple weeks in, never over 5 cans a day as I was still eating. I did lose 40 lbs, 20 during treatment and 20 more since. I had the tube removed probably 6-7 weeks after I finished treatment. My vote would be to get it, but I won't lie, It hurt like H___ for about a week after I had it placed, piece of cake to have it removed. Good luck which ever way you go.

I wonder if your weight before has anything to do with the Doctor ordering a Peg or not ? I was very over weight and my Doctors never mentioned a tube. I lost 60 pounds during tx and have lost about 10 more since . I lost it so fast tho , I lost a lot of lean muscle and am very boney in the neck and shoulder area. Now my PCG is worried about me losing anymore weight and I am just trying to maintain but continue to lose slowly.

   Peggy

peggylulu said:

Weight

I wonder if your weight before has anything to do with the Doctor ordering a Peg or not ? I was very over weight and my Doctors never mentioned a tube. I lost 60 pounds during tx and have lost about 10 more since . I lost it so fast tho , I lost a lot of lean muscle and am very boney in the neck and shoulder area. Now my PCG is worried about me losing anymore weight and I am just trying to maintain but continue to lose slowly.

   Peggy

Hi Peggy.

I went through a very similar experience and lost over 100 lbs before my doc referred me to an Endocrinologist. It turns out that the 60 radiation treatments to my throat fried my thyroid. I am now on Synthroid, gained back 30 lbs and my weight has been stable (fluctuates plus or minus 2 pounds) for more than 18 months. Ask you radiation oncologist or family doc about this possibilty.

Army_Guy

No evidence from talking to professionals that feeding tube is beneficial unless weight loss and dehydration is significant. Pros and cons but potential for long term swallowing difficulties from having a tube need to be weighed by your medical team against maintaining calories and hydration.It's a balance and everyone is different in terms of what they can tolerate.

Keep him swallowing if you can and keep the pain manageble. My husband is 4 months post radiation, on a normal diet, has gained back most of his weight, and the last PET was NED. This will pass- it's not easy- but it will pass.

Best wishes 

For us feeding tube was a no brainer.  The procedure is quite simple and knowing that he is getting the nutrition needed  makes life just that much easier. It  definitely worked for us. Also it is very simple to do the actual feeding. hope this helped a little.

Gundi - your husbands situation sounds much like mine - by about the same time I was down to no food just drink.   My food nazi wife made me protein fortified smoothies plus i drank 1 to 2 Ensures a day.  It was miserable, solid food was horrible - my stomach told me not to send anything solid down there.  

2 of 3 docs told me to get a feeding tube, one insisted - he told me he was "driving the treatment bus"  maybe says I but I own the bus - my decision was that I set a trigger point weight and that once I dropped below that weight I'd get a feeding tube.    I crossed that trigger point during my last week of treatment and never got the feeding tube.

I lost 17 pounds during treatment - I started at 220 - I weigh 208 today 21 months after my last treatment.    I lived on liquids alone for months.   Turns out that no feeding tube was a good decision for me.   Am I happy with my decision - I sure am and so are all 3 of my docs.   I rebounded quickly.   Hang in there

Gundi said:

feeding tube or not update

I started the recent feeding tube thread a few days ago, so thought I should give an update.  We saw the RO today and he admits that most people with laryngeal cancer do end up with a feeding tube, but he thinks my hubby can make it without since he is losing only a pound or two a week.  He still eats eggs, pancakes, the jar of peaches someone mentioned, smoothies, soups, etc. plus 3 bottles of Boost a day.  The cancer never gave hubby a sore throat, that is until week 4 of treatment, so I suspect he is one of the lucky few with a pretty tough throat.  Right now it is getting quite painful to swallow, so hubby asked and received a major painkiller prescription.  The doc said there will definitely be a feeding tube if he loses too much weight.  He has 10 rads left.

Many thanks to all who responded to my "Feeding tube or no tube" question.  There were lots of great suggestions and a pretty lively discussion.  As the medical professionals have told us about a milliion times, when it comes to cancer "everyone is different."

Hi Gundi,

If you still are making it orally, then you are single digits to end of radiation so skip the PEG. I was gung-ho for the PEG early but now just as opposed to getting one until I am heading the the skin and bones lot. I am certain I have sufficient knowledge and techniques to survive without one. Opinions and experiences on this aspect of the cancer "experience" are all over the map. Hope for the best, you are almost to the finish line. don

JoeTEMT said:

Feeding Tube

I had a feeding tube put in before my surgery for cancer because mouth would be to swollen and hard  to eat anything!  My surgeon recommended it! Was not a problem getting it in is a small,surgical procedure!  I am so so glad it was put in!  I had cans of Glucerna put in a large plastic bag with an attached tube.  It just friction fits  into the feeding tube!  I ran it through the night never felt anything and when I woke I was finished with the pump for the day!  This way I was not attached to anything during the day and could go wherever! The food cans and bags were delivered to the house and insurance paid for everything! When I was told I could start eating soft foods I eventually weaned of  the tube and when I was able to maintain my weight eating by mouth the tube was stopped! I had a trach put in and that also had to be taken out and heal before I could eat or drink.  I was so glad I had it! I had radiation also and the mouth was sore inside also lost my taste buds which are now back! I was so glad the tube was there! Ask away if you ave any more questions! I was operated at Sloan Ettering n New York on July 13, 2012 and as my last PET and CT scan was cancer free!

My onc strongly recommended putting in the PEG before Radiation and chemo started. He said if you need it during treatment, it's better to have it in beforehand. If you wait until you really need it, you will probably be in the hospital for dehydration, you will be feeling lousy, and it won't be a great time to have an additional surgery. So I put in both a PEG and a port so I don't need to get stuck any more.

I had the procedure yesterday and had a very painful night. It felt as if I had been stabbed in the gut because I guess I was stabbed in the gut. I'm feeling better now because I am learning how to avoid the painful positions. You would be surprised how much you use your stomach muscles! 

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a.gregory.wright@gmail.com said:

I just put in a PEG and PORT before therapy

My onc strongly recommended putting in the PEG before Radiation and chemo started. He said if you need it during treatment, it's better to have it in beforehand. If you wait until you really need it, you will probably be in the hospital for dehydration, you will be feeling lousy, and it won't be a great time to have an additional surgery. So I put in both a PEG and a port so I don't need to get stuck any more.

I had the procedure yesterday and had a very painful night. It felt as if I had been stabbed in the gut because I guess I was stabbed in the gut. I'm feeling better now because I am learning how to avoid the painful positions. You would be surprised how much you use your stomach muscles! 

 

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for 3 days after they put my PEG in.....the cramps were like labor pains.....from there on out, tho....it was a part of my body....one I had to tuck into my pants.

p