#36983 11-10-2003 08:14 AM | Joined: Mar 2003 Posts: 5 Member | OP  Member
Joined: Mar 2003 Posts: 5 | Good afternoon all, Been a while since I was here. After a partial glossectomy 6 months ago, three weeks ago I had a 6 hours radical neck dissection where many nodes were taken and most of which came back cancerous (part of the vein is gone also). I will be having radiation on both sides of the neck very soon and three treatments of chemo (cisplatin) during the 1st, 4th and 6th week of treatment. I am now quite angry because the medical oncologist insists I have a feeding tube otherwise she says there will be no chemo .... I have a lot of weight to spare and figured I would just force myself to eat/drink during treatment no matter what because I did not want the tube. I am taken aback at her being so adament she says she always ends up with patients who are so malnourished after about 1 month of radio that she cannot even give them their chemo treatment since it is too hard on the kidneys. My father died of the same illness four years ago and he also had the tube. I don't know why I am bucking it after all this surgery and feeling like Young Frankenstein but there you go! Any help? Marie  | | |
#36984 11-10-2003 12:43 PM | Joined: Oct 2003 Posts: 25 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2003 Posts: 25 | Marie
I am in my third week of a similiar treatment that you will undergo and at this point it is almost impossible to eat and even if it were the desire is not there. The feeding tube is the only way to go - it is not a problem and it just becomes part of your body after about two weeks. I am still losing some weight with the tube so I can imagine what it would be without it. Think about this.
Stage III base of tongue and right nodes
len Philadelphia
SCC base of tongue,T1N1M0, Rad & Chemo, treatment ended 12/11/2003
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#36985 11-10-2003 03:11 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I am in agreement with the previous poster. With what you have ahead of you, you will have a hard time taking things by mouth after the first couple of weeks of radiation when the mucocitis really starts to set in. More than that, you are missing the primary reason for getting a PEG tube, and that is to keep up your nutrition. Even if your body has excess weight as you say, it is likely not excess muscle tissue but adipose tissue. As your body undergoes the cellular destruction from the treatments, it needs proteins and amino acids to rebuild the damage each day. The results of poor nutritional intake will be slower healing and the loss of lean body mass (muscle tissue) which is made up of proteins and amino acids. Read the many many posts here on this subject using the search engine on the message board. It really is something that few people can get through this without.
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.
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#36986 11-10-2003 03:31 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I am in agreement with the previous poster. With what you have ahead of you, you will have a hard time taking things by mouth after the first couple of weeks of radiation when the mucocitis really starts to set in. More than that, you are missing the primary reason for getting a PEG tube, and that is to keep up your nutrition. Even if your body has excess weight as you say, it is likely not excess muscle tissue but adipose tissue. As your body undergoes the cellular destruction from the treatments, it needs proteins and amino acids to rebuild the damage each day. The results of poor nutritional intake will be slower healing and the loss of lean body mass (muscle tissue) which is made up of proteins and amino acids. Read the many many posts here on this subject using the search engine on the message board. It really is something that few people can get through this without.
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.
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#36987 11-10-2003 04:18 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Marie,
Get the tube, trust me on this one. I had one put in when I had my operation April 16th. It served me well during radiation and I STILL have it now 4 months after radiation has ended. I am having it removed next Tuesday as I haven't used it for a few weeks. This tube is not a problem, but I'm sure it would have been a HUGE problem if I hadn't had it. Take care.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#36988 11-11-2003 05:44 AM | Joined: Sep 2003 Posts: 37 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 37 | Marie, Curious to what lead to the neck surgery 6 months later...did you have a test come up positive for cancer in the lymph nodes? Did you have lymph node dissection along with the partial glossectomy? What stage was your tongue cancer? Just trying to figure out what to be on the lookout for as my husband is 3 months post surgery. Thanks, Debbie 
Debbie/Caregiver/wife of Dan, diagosed with SCC tongue, Stage II/III, 1/3 tongue removal, lymph node dissection both sides of neck, skin graph 7/30/03. Left tumor found - radical left neck dissection 12/24/03. Could not get all of tumor/wrapped around carotid artery and in wall of jugular. 1/12/04 beginning of 6 doses of Taxol/Cistoplatin once a week, and rad 70 gray 5 days a week/6 weeks.
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#36989 11-11-2003 08:09 AM | Joined: Mar 2003 Posts: 5 Member | | OP Member
Joined: Mar 2003 Posts: 5 | Thank you for your replies. Is the insertion of the tube done under anasthesia?
Debbie, I had the tongue surgery in March and was diagnosed with an early stage (1) and my monthly visits were all very positive. But I discovered a swelling on side of my neck this August, doctor could not feel anything but brought it up to someone else who suggested a C-scan which showed it had spread to the right side of my neck in the nodes. Quite advanced - apparently though not noticeable by touch. | | |
#36990 11-11-2003 09:52 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Marie-
I too was worried about haviing a PEG tube inserted. Mainly because I got married in between my cancer surgeries and I was concerned about my new husband seeing me with a tube hanging out of my stomach! And I couldn't imagine how they would get it in there.
Please trust your Doctor on this. It is for such a short time - it is so important for your healing and you won't even remember much as they put you partially asleep for the process. You might remember gaging a bit, but that is it. You wake up and it is done. I lost 45 pounds even with the tube. I can't imagine what I would be like without it! Removing it was just a tug and out it came. No big deal. Hang in there and we'll all be praying for you!!
Kris - just celebrated 15 months from treatment and still cancer free!
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#36991 11-11-2003 09:54 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Marie-
I too was worried about haviing a PEG tube inserted. Mainly because I got married in between my cancer surgeries and I was concerned about my new husband seeing me with a tube hanging out of my stomach! And I couldn't imagine how they would get it in there.
Please trust your Doctor on this. It is for such a short time - it is so important for your healing and you won't even remember much as they put you partially asleep for the process. You might remember gaging a bit, but that is it. You wake up and it is done. I lost 45 pounds even with the tube. I can't imagine what I would be like without it! Removing it was just a tug and out it came. No big deal. Hang in there and we'll all be praying for you!!
Kris - just celebrated 15 months from treatment and still cancer free!
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#36992 11-11-2003 12:15 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Marie,
The feeding tube is done under a very light anasthesia. By light I mean like 15 minutes. I remember laying on the table and once I received the injection through the IV that was it. I woke up 15 minutes later with the tube in place. Had just a little soreness for a day. Have had the tube in for 4 months with no problems and no pain. I lost 30 lbs in 10 days after the surgery and was lucky to gain it all back in about 6 weeks using the feeding tube. My insurance company pays for the food I inject in the tube. It has all the needed calories, Protein and vit's needed. I add carnation instant milk powder(choc) to two cans of the Jevity for an extra 140 calories. I am a rather thin man and had to keep my weight up.
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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