Newly diagnosed

You have asked a loaded question on this site when it comes to a feeding tube.  Many didn't and then again many did, many had no problems and then again many didn't.  The way our doctor explained to us was that if it wasn't needed it would be easy to remove but to put it in after radiation begins can cause problems.  We were glad that my husband decided to have the PEG tube inserted before treatment as the radiation closed off the back of his throat, something we didn't know until he had surgery.  He was able to eat again after surgery to remove his laryx but that didn't last long as he had to undergo a second round of radiation in basically the same place for a second primary.  At first the doctors weren't going to go with a feeding tube, but due to his weight (6'4" - 145 lbs) they decided it was best and once again they were right as soon he wasn't able to swallow.  Now with a PEG tube, my husband had no problems with the PEG tube, others do.  In fact, one of his lasted over 2 years before it had to be changed out and hospice did it while he sat in his recliner. 

So you will get many different opinions on a PEG tube.  All I can is listen closely to what your doctors say and then decide.   Also be sure to drink plenty of water to stay hydrated.  My husband had Cisplatin the first time, and he didn't and ended up having to have IV fluids several times.

Wishing you the best -- Sharon

keldog,

I had no choice in the matter really as I wanted the Tumor on the Base of my Tongue removed, so I had surgery and was not able to eat orally for sometime. I did not have any issues while having and using the PEG tube. Once my tongue healed up and the Trach was removed, I was told to start eating soft foods.

I did so until I started my Radiation treatments. Around week 3-4 I leaned on the PEG Tube more because of the sores and swallowing issues. So, I maintained my weight the best I could with the combination of Shakes/ Soups orally and the Nutrition cans via the PEG tube.

Once I completed the radiation and was able to maintain my weight eating orally, the PEG was removed, roughly 8 weeks afterwards from the final treatment. Even with the effort I put into eating, many days I just couldn't get myself to take in enough calories. So I did lose around 45 lbs over the whole experience.

My Best to You and Everyone Here

You sound pretty much like my twin.., other than I was STGIII, with the same side and single lump also.. My protocul was a little different as I had Nine weeks up front similar to you with Cisplatin, Taxotere and 5-FU via a pump through the old power port..

Then the seven weeks of rads, with weekly Carboplatin or concurrent..

They didn't really ask me one way or another of my opinion on the PEG.., it was discussed as an option if I needed it down the road.

I never did...

Some here will swear by it, others say it's not that big of a deal if needed once in the mix.., and others will tell you why wait, get it up front.., or you should do it when you're feeling good, versus later when you might be hurting for calories and down and out.

That's a decision you'll need to decide..

I weighted a few more pounds than you going in, but I only lost 42# overall during that sixteen week ordeal.

Was it tough, hell yes.., it's a battle..

But bottom line.., it's all calories and hydration.., nothing more, and certainly not for taste and enjoyment.., because more than likely, you won't have either about 2 -3 weeks into rads.

Again, welcome aboard and hang on for the ride...

BTW.., I was Dx January 2009..., I'm not considered in complete remission...

Best,
John

Hi Keldog,

    My husband sounded very much like your same situation. He finished treatment in Feb 2015 for stage IV, right sided tonsil CA, T1N2bM0, hpv16+. He had 33 days of radiation and 3 rounds of chemo - Carboplatin. His doctors felt that a PEG tube wasn't necessary to start and would be considered on an as needed basis. He never wound up needing one, but it wasn't easy. The last week of treatment and the two weeks after were difficult. He did go in for IV hydration every other day during that time as he wasn't able to drink enough to keep well hydrated. It was his choice to go in for the IV's, but he felt better when he was well hydrated. He lost a lot of weight and has only recently stabalized. He is 6ft 2in and started at around 235 lb. and now weighs 180 lb. He feels great, but his taste buds haven't yet recovered and his saliva is still gone. He hasn't gained back any weight because he says food doesn't taste the same and the dryness is anoying. We are hoping that over time some of this will improve. He has no regrets about not having a PEG tube and would do it that way again as it's one less thing to deal with.  What worked for my husband may not work for you, but that was our experience. Good luck with your decision and hang in there, treatment is tough, but doable.  

Welcome keldog, to the club nobody wants to join. 

As mentioned above, there have been many discussions regarding the PEG tube.....get one or not. 

I got one before treatment started, and that could have been because I was skinny in the beginning, tho maybe my Oncologist just has everybody get one.  I didn't question, I just did what was suggested.  I did manage to get through radiation without using it, but I had adjuvant chemo (after rads), and I wouldn't have made it without my tube during that time.  I think it's ok to wait....as long as a person doesn't get a mind set that "they will not get one no matter what."  This treatment is a weight losing proposition, and it's vital to recovery to take in calories and hydration....as much of each as possible.  If it takes a tube to do that, then a tube should be put in....

p

I'm 4 weeks out of radiation along with 5 treatments of Erbitux. I weighed 189lbs a few months before I got my DX. I was diagnosed with stage 4 right tonsil cancer the end of May. At the start of treatment I weighed 179lbs and the Dr recommended a peg. I just didn't want one. The Dr wasn't happy but rolled with my decision. His advice was pump up and eat as much as I could before treatment started in a few weeks. I did. He thought if I started to fail to thrive he was going to insist on me getting one mid treatment. They do not prefer this.  During treatment it did get rough. It's still  hard 4 weeks out but getting better daily. I drank 4 boost or ensure a day and what ever I could eat during the 35 treatments. I ate something every day. My weight only dropped to 170lbs at its lowest. But I'm what they call stubborn stupid. In my case I'm very glad about my decision to not get the peg. I'm very Blessed in life even in cancer.  God says He has power over all flesh. Cancer is flesh. I ran with that.  It was God who helped me make the peg decision. He gave me the strengh to force the food down and drink . This is what I had to do to maintain nutrition.  One key point also in my decison to not get a peg was I didn't want to become dependent on it or lose my ability to swallow. I hope the best for you. This board was of great value to me. This treatment is brutal, at times I didn't even feel human,  but life is good. This is what we have to do to get our health back.

It is highly recommended to get a second opinion. You also want to have your case reviewed by Tumor Board to get a wide range of review and input. See if you can be treated at a CCC, these are specialized facilities recognized for their treatment of cancer.

As to PEG, you did touch the third rail in this forum. Unless there is particular reason to get one early, try to do it without one. You can always get one if needed, it is not a big deal at all. Every day you can swallow and eat orally is that much better for less chance of encountering long term swallowing issues. 

There are plenty of cases here where PEG causes various issues. Then again, there are plenty of reports where it provided life giving nutrients. I was 178 going in and 148 coming out, a free diet plan but not one I'd recommend to anyone.

Read up as much as you can and ask questions as they come up.

Good luck

SASH said:

To Tube or not to Tube, That is the question

I opted for no tube for during treatment, which was probably a mistake.  After week 3 or 4, swallowing was very painful even with the use of Magic Mix(Mouthwash).  Ask your doctor about this.  I lost 95 pounds through treatment and this was pre-surgery.  I had to have the tube for nutrition after surgery and found it very easy to deal with.

My personal recommendation is get the tube and only use it when you really need it.  Get in as much via the mouth for as long as possible, and even if painful, keep swallowing.  You don't want to have to re-train your muscles how to swallow, which may happen if you solely rely on the tube.

Good luck on your journey.

I had horrible sores on my lips with the Cisplatin. Before tx started, I was given a gtube. Only good for hydration, Ensure and the like and maybe a strained broth. I think it is different from the PEG in that it's very thin and nothing large implanted under skin. Smaller than size of pencil. You can not grind food and put it thru like some people discuss with a PEG. You might consdier. I was thankful I had mine midway thru. My opinion is better to have it and never use it than to need it and have to have inserted when you are down and out.  Even with mine, I was down 60+ pounds. 

I also had a Hohn catheter instead of port that I had no difficulties with.

Good luck with making the best decisions for yourself.

Catzv said:

Feeding Tube

I'm almost two weeks after my final radiation treatment.  I had a JPeg inserted before my radiation started.  I'm very glad I did.  It's still difficult to eat, and the tube makes it easy and convenient to get the nourishment I need.  It would've been very difficult to get this inserted mid treatment.  I still drink liquids and have applesause so I do not lose my ability to swallow. 

Welcome to the H&N Group and sorry you need to be here. You have found the best group for support and help and answers. I do recomend reading the thread on top called the superthread as it has so many answers and information.

http://csn.cancer.org/node/261072  

You might also start a new thread just to interduce so everyone can respond to the nw thread and Welcome you.

Bill  Oct 2013

Like everyone Welcome to CSN H&N, sounds like your game plan is all together and you are off to a good start. As you get a little farther down the road and it gets hard to eat normal the PEG tube is a very good option. I lost my ability to eat completely about 3 years ago and have lived on the PEG tube all that time. Believe me it is truly a life savior and a blessing to me rather having to live with a tube up my nose for the rest on my life. I do some traveling now and then on my own and the only problem I have is people always looking when I open my shirt and start feeding myself. I made it through both of my treatments with no PEG tube, but knowing now how easy it is now I wish I would have gotten one put in then.

All the best my friend and get ready for Monday

Tim