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Author |
Topic: Feeding Tube |
marliz
Member
Member # 86
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I was diagnosed with stage 3 tongue base cancer Feb. 13 and
am a total wreck. My surgeon has said from the beginning no
chemo just some radiation. The radiologist said he would lose
sleep if I did not get radiation but would not lose any if
I did not get chemo. The oncologist is pushing for it and
I have declined. I would like to know if anyone has got through
radiation without a feeding tube.
Posts:
15 | From: Butler PA. | Registered: Apr
2002 |
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Packer
66
Platinum Member (100+ posts)
Member # 96
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My husband got through 6 wks of twice daily radiation without
a feeding tube, although, I think it depends on how much weight
you can afford to lose........Of course, since then he has
had radical resection and has a feeding tube since August.
It`s actually no big deal, and it`s only temporary. The main
thing is to keep you as strong and healthy as possible.
Posts:
147 | From: Maine | Registered: Apr 2002
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Brian
Hill
Administrator
Member # 4
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I definitely side with the radiation oncologist. There is
no finite way to be sure a few errant, malignant cells aren't
still in the area or somewhere in the lymph tissues between
the primary tumor and the neck nodes or those on the floor
of the mouth. Irradiating this area will insure that any there,
are taken care of. I also agree with him about the chemo.
For people who have had more advanced cancers, sometimes it
is used at the end as a "body wash" to clean up any micro
metastasis that may be further away from the site of the original
primary tumor. I declined the chemo at the end of my surgery
and radiation, I just didn't have the strength to go through
it. I do not regret that decision now almost 4 years later.
PET scans of my whole body indicate that I am still cancer
free in areas that would have bloomed by now if there were
cancer there. It looks like OCF should put up a message board
regarding feeding tubes. In the big picture of all that is
going to be done to you, it is no big deal. It is painless,
and if you want to get the optimum nutrition for a rapid recovery
and healing, necessary. Once the severe mucositis and the
rest kicks in around your mouth and in your throat from the
radiation, swallowing anything is going to be tough. Take
the easy way out and never look back.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
364 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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vb
Contributing Member (25+ posts)
Member # 91
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My mother had a tube when she was in for neck resection, but
before radiation. There was about a month between neck surgery
and beginning of radiation and the tumor on her tongue grew
rather quickly. She tried to keep eating normally, but it
was difficult and the doctor told her to use the tube because
she was tiring herself out trying to eat by mouth. After she
began the radiation and chemo he told her she needed to concentrate
on getting through the radiation and chemo not on trying to
eat by mouth which became quite trying for her with all the
side effects. The tube turned out to be a very good thing
indeed. She has had to have more surgery and luckily she never
had the tube removed after radiation even though initially
it was a major goal for her.
Posts:
36 | From: Syracuse, NY | Registered: Apr
2002 |
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brenda
Member
Member # 61
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My husband Darren has stage 3 base of the tongue cancer. He
is now going into his 8th week of radiation treatments. He
also has done chemo within this 8 week period. He had a feeding
tube put in a week before his treatments and has been very
thankful that he did. It is very important that you keep up
your nutrition through your treatments.
Posts:
2 | From: Halifax, Nova Scotia, Canada |
Registered: Mar 2002 |
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Donna
Platinum Member (100+ posts)
Member # 33
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With the feeding tube in and in place, I stil lost almost
70lbs. during treatment. (chemo and radiation) I really don't
know what I would have done without the feeding tube in. It
not only helped me with my nutritional needs but it also helped
keep me hydrated and out of the hospital. There is no way
I could have swallowed the water necessary to keep me hydrated,
my mouth was just too sore. The feeding tube is easy to use,
easy to hide underneath clothing, and it does not smell. (My
biggest fear.) Of all the things that can happened because
of a cancer diagnoses, the feeding tube is the easiest thing
to endure--comparatively speaking, it really is a "walk in
the park." My feeding tube was in place for well over a year
with little problem, and it stayed with me until I felt confident
that I was getting enough nourishment without the feeding
tube.
Posts:
128 | From: Plymouth, Minnesota | Registered:
Mar 2002 |
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Eli
Member
Member # 117
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Hi, This is my first time on the board and so far its been
extremely helpful. My sister had radiation treatment for her
oral cancer of the tongue. At this moment she has major sores
in her throat and can barely eat. They are recommending a
feedng tube, she is losing tons of weight and I fear for her
lack of nutrition. From what I see on this board it seems
that a feeding tube would be very helpful. They say her sores
aren't healing because her eating of normal food is irritating
the throat over and over again. Can somebody please tell me
all about the feeding tube, is it painful, does it help? About
sores in the throat area and if they ever get better. Its
really painful to see her go through this. Thank you in advance.
You are all an inspiration and I wish speedy recoveries and
good health for everyone.
Posts:
19 | From: Massachusetts | Registered: Apr
2002 |
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Ilene
Supporting Member (50+ posts)
Member # 116
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I'll start by saying that the tube is probably a good idea.
For myself I was totally resistant to the idea because one
of my fears was that the cancer was so advanced that I would
permanently need the tube (it wasn't and I didn't). In my
case inserting the tube was the worst of the procedure. Because
of previous stomach surgery and how extraordinarly burnt my
throat was from radiation they had to do surgery to put the
tube in. It was a big incision and I was in a lot of pain
for a couple of days. After I started recovering from the
surgery the tube was relatively problem free. I was always
in some discomfort at the tube site and others have told me
that they have also experienced that. However, the pain was
mild and certainly tolerable as opposed to not being able
to swallow at all. For me the difficulties were more psychological
than physical. I did still lose a lot of weight before, during,
and after the tube. The tube does not smell and you can still
shower without having to wrap it or cover the site. It's kind
of a pain to travel with all the equipment, syringes, bags,
pump, food, etc. but I did some sort overnight trips. We did
decide to cancel a couple of plane trips right after 9/11
mostly because I was still so weak but I also didn't want
to have to deal with explaining all of my paraphernalia to
security.
Posts:
50 | From: Duluth, Minnesota | Registered:
Apr 2002 |
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Eli! The feeding tube is no big deal. If you have read my
post about this in another section of this forum, you will
know I was irrationally afraid of this, and embarrassed when
it proved to be a piece of cake. I had an IV started, and
when I woke up had a tube. Does NOT hurt. Was a little sore
for just a day. Tell your sister that I was the world's greatest
doubter, but I have been converted. She needs one.
Posts:
161 | From: Pacific Northwest | Registered:
Mar 2002 |
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Brian
Hill
Administrator
Member # 4
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Eli.... The mucositis will be there from at least the third
week of radiation, till perhaps 6-8 weeks after it stops.
In most patients it becomes so severe that they cannot eat
properly, their mouths are just too sore. This was definitely
my case when I went through treatment. The only things that
helped at all were a topical anesthetic in solution that I
could swish my mouth with to numb things for awhile, and rinsing
many times a day with bicarb of soda and salt in warm water.
They do go away, but a person can become under nourished if
they do not eat properly during this period. The tube is a
sure bet. There is more about these sores and other complications
in the mouth from treatment on the web site in the dental
section, "Dental and oral complications from treatment".
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
364 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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Eli
Member
Member # 117
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Hi Brian and everyone, thank you for responding.
The thing is my sister had radiation 2 years ago, started
to get better and she now has the worst sores down her throat
than any of her other sores before this. Its been 3 months
and no relief, losing tons of weight and can barely eat. Drugs
and even steroids aren't helping at all. I am hoping that
with the feeding tube, if she decides to get one, she can
give her throat a break to heal because eating must be irritating
it even more.
Posts:
19 | From: Massachusetts | Registered: Apr
2002 |
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Eli
Member
Member # 117
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Any suggestions on what the best place to put the feeding
tube is? I heard you can choose where to place it on your
body? Is this true? Any and all tips will be helpful. Thank
you
Posts:
19 | From: Massachusetts | Registered: Apr
2002 |
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Brian
Hill
Administrator
Member # 4
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You will not have a choice. The best place is the shortest
distance between the outside wall of your chest, just below
the rib cage and the stomach. The shortness of the tube make
it hygienic, keeps the procedure to put it in simple and to
the point, avoids other structures, nerves, and blood vessels,
and can be hidden under your shirt when not actually in use.
Be thankful that it is not 7 years ago when feeding tubes
were larger and routinely placed through the nose. You would
have this three inches of tube hanging out of your nose for
months............ The technique has come along way since
those days. Just let them do what they are going to do.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
364 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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Donna
Platinum Member (100+ posts)
Member # 33
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Hi Eli.........Brian is right, just let them do what they
are going to do. Your sister may be uncomfortable the day
of the surgery and possibly a little sore for a day after
that. By the second--third day, she'll be just fine. Hopefully
she'll begin to feel better once she has some nourshiment
and liquids going into her system. I had my feeding tube well
over a year with little problem, and I am so glad that I listened
to the Doctors when they suggested I have one put in. Even
with the feeding tube I had trouble keeping my self hydrated
and nourished. I just never felt like eating; I never really
felt hungry. But with the tube I could put myself on a schedule
and just feed because I had to not because I wanted to. It
just made everything so much simplier, and I'm sure I healed
quicker because of the nourshiment I was able to get with
the feeding tube in place. Good luck to both you and your
sister. SIncerely, Donna
Posts:
128 | From: Plymouth, Minnesota | Registered:
Mar 2002 |
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marliz
Member
Member # 86
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Thank you all for your advice on the feeding tube, I am not
worried about it if they say I need one. I thought I was going
to have my first RAD yesterday, but got 3 x-rays and met some
of the people who will be doing the RAD. Today will be the
first, and I am very fearful but I"ll have to be strong and
hope for the best. I had the radical neck surgery 3/6/02,
have the scar and numbness and still find this hard to believe.
Can anyone relate? I am very thankful for this forum as I
pretty much feel alone. I have a husband and family, but I
don't think they can believe it either. Wish me luck. Thanks,
Marlene
Posts:
15 | From: Butler PA. | Registered: Apr
2002 |
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Ilene
Supporting Member (50+ posts)
Member # 116
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Marliz (and others) - you asked if anyone could relate. I
certainly can and I'm sure there are many others who do also.
That is what makes this site so wonderful. There are others
out there who have gone through or are going through similar
experiences. I now have 2 scars - 2 neck dissections 14 years
apart. Both times I was very self conscious about the scar
right after the surgery and found various ways to cover it
up. Now I'm not so concerned about them. My numbness did get
better although I still have some numbness on my face along
my jaw line and one side of my neck. Good luck with the radiation.
Posts:
50 | From: Duluth, Minnesota | Registered:
Apr 2002 |
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