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#35815 04-21-2002 12:55 PM
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Eli Offline
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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.

#35816 04-22-2002 12:56 AM
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Eli Offline
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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

#35817 04-22-2002 04:11 AM
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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 4 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.
#35818 04-22-2002 04:23 AM
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Posts: 188
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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


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#35819 04-25-2002 12:01 AM
Joined: Apr 2002
Posts: 52
marliz Offline OP
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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


Marlene
#35820 04-25-2002 03:46 PM
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Posts: 73
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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.


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
marliz #86695 12-26-2008 01:51 PM
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Hi All,
I recently had a peg tube put in (Dec 15th)and was wondering if anyone had any suggestions of how to support it. Right now, I am still having to use 4X4's and tape because I ended up with an infection. How do you keep it from dangling besides looping it and taping it? My mom suggest a tube top, but I am still in treatment in Chicago. Being winter it would be near impossible to find a tube top in Chicago.
Thanks, Becky


9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue.
9/26 Laser Surgery
10/9 First appt. at CTCA in Chicago
11/24 RO Tomo TX (5x wk)for 7 wks
11/26 Port Insertion w/access
12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks
12/15 - Peg Tube Insertion


Becky C #86697 12-26-2008 03:24 PM
Joined: Nov 2005
Posts: 1,128
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What I did with my first PEG, and will do with the one I'm getting tomorrow, is use a neck lanyard that came with a USB storage device (aka dongle, thumbdrive, etc.). It has a clip so the PEG is easily removed and reattached. Even a string would work without the pain of tape.

My second PEG pointed down and was a problem in this regard.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #86698 12-26-2008 04:09 PM
Joined: Jul 2007
Posts: 939
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Becky,

We had wonderful luck with a nice 4 (6 inch even better if you can find it) wide ace bandage...the soft ones with the velcro closure..[b]not[/b] the rubbery self stick ones. They are washable and you will need two or three to have a clean change. Just wrap it around the torso a couple of times and close with the velcro making sure the loop tape is not exposed to the skin.

Bill could not tolerate any kind of tape for more than a day...really made his skin sore and rashy. He could just reach under the ace and bring the tube out when it was feeding time and then tuck it back in afterwards. It stayed in place even during sleep and didn't show thru his shirts.

Hope this helps...Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
debandbill #86699 12-26-2008 04:50 PM
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Radiation nursing staff gave us a long length of stretchy netting that could be cut to width needed and put on over head (like a tube top). It also stood up to washing.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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