Feeding tube question and other stuff (nutrition)

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Feeding tube question and other stuff (nutrition)

by Njmae on Wed Sep 14, 2016 09:02 PM

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Stage 4a BOT lingual tonsil HPV. I am in the process of getting everything lined up to start chemo (Cisplatin) and radiation on Monday. Had hearing test (normal for my age) and will have swallow/speech consult next week. I had a port put in this morning as I have had lymph nodes removed under my arms due to two previous breast cancers. Oncologist didn't want to risk lymphedema. So none of the doctors recommended a feeding tube. But from reading this forum, it seems like most of you had a feeding tube for this stage and treatment regimen. I understand the theory of eating normally as much as possible but I am perplexed that my doctors actually discouraged the tube. I have no symptoms currently, even though the tumor is about 3 cm. Normal jaw and tongue function. If you recognize me from previous posts, I just took myself to an ENT because of a 3-year enlarged lymph node of about 1 1/2 cm., unchanged. Bingo, Stage 4a. Can I actually do this without a feeding tube? Have any of you? I could afford to lose ten pounds, not much more. I have ordered whey and hemp protein to beef up my drinks once I have trouble with regular food. I bought a Vitamix. I am opposed to Ensure due to sugar and corn product ingredients. I also have a question about magnesium levels. I have read that chemo depletes them. Has this been your experience? I notice that my blood work requisition asks for magnesium. Thanks for any input. Seems like there are many different paths. I am terrified.

RE: Feeding tube question and other stuff (nutrition)

by atcbugsy on Wed Sep 14, 2016 11:08 PM

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Njmae,

My biggest regret is not getting the feeding tube.  By treatment 28/33, my mucous was so thick I couldn't swallow pills.  They would just sit in my throat and 30 minutes later I would spit them out.  I was severely dehydrated.  I was about 165 going in and about 140 coming out.  Before I got the tube it took me about an hour to drink a little bottle of Ensure.

My advice, get the tube.  If you don't use it, WOOHOO!  But you'll have it if you need it.  You can still exercise your swallow muscles even when you're on the tube.  It's not and either or scenario.  You can do both.

Try not to be terrified.  Knowledge is power and you're in the right place.  Your treatment team is also a great source of information.  A question you might ask your doctor is, if you do need a feeding tube, how quickly can it be installed and would there be any disruption to your treatments?  

Best of luck with whatever you decide.

Bugsy

RE: Feeding tube question and other stuff (nutrition)

by patgp17 on Wed Sep 14, 2016 11:44 PM

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My husband's physicians told him to get a feeding tube, which he did. They suggested to do it before the chemo and radiation. If it is not needed then great. Best decision. It does not take long for your body to become depleted of necessary minerals and vitamins when you are unable to eat and drink fluids properly. My husband took magnesium and potassium during treatment and he still takes it. His magnesium and potassium levels remained normal during treatment.

RE: Feeding tube question and other stuff (nutrition)

by Loves2Fly on Sat Sep 17, 2016 06:59 PM

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My husband got the PEG tube before he began treatment and we are very glad he did. His Doc said you don't have to use it, but if you need it, it is there. He fought using it, but he definitely needed it. With the PEG, he lost 66 lbs (215 to 149, at 6' tall). It also allowed him to use a nutrition formula which gave him what he needed without the sugars, etc. Since the formulas aren't really tasted, they don't put the extras like sugar and flavorings in them. Our insurance paid for all of it also - much cheaper than buying ensure or such. He does burp them, so taste is a small issue, but by using drinkable yogurt thinned with milk, he can burp peach, strawberry, raspberry, etc.

Chemo - especially the metals based like cisplatin - can do a real number on the kidneys, so you will have bloodwork done to monitor their function. Here is where hydration is critical. You need to hydrate to flush the kidneys. A PEG tube can be a really big help with that. You can get fluids in quickly and easily as needed.

Wishing you all the best as you go through this.

RE: Feeding tube question and other stuff (nutrition)

by ScttFrancis on Sun Sep 18, 2016 04:35 AM

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If I had to do it all over again I would start out with the tube. They told me to try to get by without it but I lost so much weight (60,lbs in a month) that it almost cost me my life. Once you get behind that much it is really difficult to catch up!

RE: Feeding tube question and other stuff (nutrition)

by Njmae on Sun Sep 18, 2016 01:11 PM

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Well, everyone here seems to say get the feeding tube at the get-go. But the fact is that I did not and none of the doctors pushed it at all. So the experiment begins. I start tomorrow with radiation and Cisplatin. Whatever happens, will. My neighbor did not get the tube and he is doing okay. So I am hoping for the best, hoping I can get enough nutrition in me to keep this show on the road.

RE: Feeding tube question and other stuff (nutrition)

by Sdurnell on Mon Sep 19, 2016 06:45 AM

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You will likely do just fine without a tube.  Your doctors have sized your case up and compared it to others and decided you are better off trying it without one.  That's what happened in my case too.

And if things change along the way, as they did for me, you can always rethink getting a tube.  I had mine put in about halfway through radiation, and it was quite easy, and didn't interfere with my treatment at all.  

Best of luck to you either way.

Susan

RE: Feeding tube question and other stuff (nutrition)

by Atoms on Wed Sep 21, 2016 09:03 PM

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Radiation often creates "mucositis," painful sores in the mouth. Often these make it impossible to eat. I used a feeding tube and can state that it is a lifesaver. Helps put weight back on, gives one good nutrition and hydration. Easy to install, easy to remove. Better to have than not.

RE: Feeding tube question and other stuff (nutrition)

by radiationtonsil on Thu Sep 22, 2016 09:45 AM

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I am near Chicago. 64 years old – male. SCC 116 HPV+ diagnosis January 2016.

I had 12 weeks of unbelievable pain/bleeding from 33 radiation treatments on my throat and tonsils.

Could not speak nor swallow liquids or solids … I still have and use my PEG today.

A lifelong friend gave me some Simpson oil when he heard of my cancer.

I was completely skeptical of the benefits of Simpson oil.

I smoked pot when I was a teen through my 20’s. I did not believe it would work.

The relief from pain was unbelievable … and it loosens your throat (so you can swallow) and increases appetite. It really is a miracle.

In Illinois it seems easy to get because it is more or less legal in Michigan and Colorado.

It is cheap … $20 – $30 a gram. A gram lasts me about a month.  Some people use more.

If you ask around the older patients of cancer support groups, someone should be able to help you out. Good luck to all of us.

RE: Feeding tube question and other stuff (nutrition)

by stayinalive60 on Wed Sep 28, 2016 08:42 PM

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I know I am an outlyer here, but I went without the tube and am very glad I did.  (Me: 61, Stage IV SCC tonsil) My doctors were mixed; some recommended it but the lead radiation doc encouraged me to start without it.  I followed his advice.  Sure, there was a period where I was more comfortable with liquids - shakes, soups, etc., but I could always get them down and was able to consume plenty of calories.  Of course I lost some weight, but everyone does.  Without the tube, I just felt more "normal," and the positive attitute has helped my recovery.  Now I am 16 months out with no signs of recurrance, normal appetitie, and other than a little dryness in my thoat, not other side effects.  I know am lucky and blessed, but you may be too!

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