#44034 10-24-2004 12:52 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Jeez guys, given some of the heated exchanges I've had with people on this board when touchy subjects like religion etc. come up, this thread isn't even warm. There is good information here, and everyone seems to be genuinely concerned with not offending other people...to me that's the way these things get handled. No one has behaved like they have a thin skin, and no one has actually flamed another...... I think all the posts here have merit. For the record, in most comprehensive cancer centers, getting or not getting a PEG is not a patient's choice. You loose 15% of your body weight during treatment and you get one, period. They provide the nutrients necessary, and the complication rate as a figure of overall procedures done is minimal. Even long term PEG users like myself still take some nutrition, and obviously water by mouth. Swallowing issues are not a result of the PEG, they come from different people's response to the effects of radiation, and the amount of scar tissue and nerve damage it causes related to the smooth muscles of the throat, the ability of the esophagus to do its peristaltic wave thing, and more. PEG or no PEG those that are going to have swallowing problems, are going to have them. Some posters here in the past have stated that they thought that the fact that they didn't get the PEG kept them from getting swallowing issues...most of the docs I have talked with would disagree with this. Everyone knows I am a big PEG proponent so my bias on this board in favor of it is well registered.
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. | | |
#44035 10-25-2004 05:58 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I agree with everything that Rosie has stated. The question was, has anyone had any experience with the gastro-nasal tube? I did, so answered it. I did NOT have this tube during radiation. I went through radiation with NO feeding assistance of any kind wwith little loss of weight. Very few of us on the board have done this and I'm not recommending that your husband try this unless his doctor thinks he can. My radiologist uses the Peg as last resort, but they monitor your weight daily so as soon as you start losing, they come up with higher protein drinks. If that doesn't work, you get either PEG or nasal tube. Swallowing the stuff isn't easy and it took everything I had to get down the 4 cans I needed to maintain my weight. He probably would have to drink 6 or 8.
After the first couple of weeks and for several after, he will probably only be able to swallow high protein drinks and water, no food at all. I suggest you find Mark's high protein shake on this board and mix some up now to see if he thinks can live on nothing but this and Ensure Plus or equivalent via mouth for several weeks. What is your husband's opinion in all of this? He and his doctor are the one's that need to make the decision.
Let's put this thread to bed.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#44036 10-25-2004 07:58 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | My doctors put my PEG in during my original surgery, they didn't ask if I wanted it, there was no question about it. I begged them to take it out a few weeks after my surgery as I was eating just fine and had no idea what radiation was going to be like. I have thanked them more then a few times for telling me NO, it stays until radiation is over. It made the treatment process easier and I did not have to worry about nutrition. I could honestly say that if I couldn't have a PEG tube then I would go for the naso tube. Just as long as I had some type of tube to provide nutrition. If I had never had a tube during radiation then I would be on here saying that it's not needed. I think that is why the subject is touchy, as we are all simply stating what we know and it's human nature to dislike anyone disagreeing with us! Dolores, I hope that we have helped you with this rather then made it more difficult. Minnie
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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#44037 10-25-2004 08:31 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | It is not human nature to dislike someone that does not agree with you, it is childish. Also, I think we who have not had a PEG are smart enough to know that going without one is not for everyone. Please end this! | | |
#44038 10-25-2004 09:02 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | I can't win here. I didn't mean we dislike the person disagreeing with us. I meant we dislike having someone disagree with us. I was trying to lighten it all up, to recognize the fact that we are supporting what we know and have experienced. I clearly said if I had not had a tube I would most likely be on here voting for NO tube. There's not a childish bone in my body........if there is I sure wish they would make themselves known so I could feel 10 again. Sorry you misunderstood my post. Minnie
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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#44039 10-25-2004 09:12 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 |
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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#44040 10-25-2004 10:03 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Minnie Stop worrying I KNOW WHAT YOU MEAN, and I'm sure everyone else does as well, if we weren't all in this mess together there would be no forum.. We transgress, age, sex, race, culture to support each other, within any FAMILY there will be differing opions, does it matter, NOPE... love you all anyway... Sunshine...love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44041 10-25-2004 10:04 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 |
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44042 10-25-2004 10:04 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 |
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44043 10-25-2004 12:06 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Helen, Well said! I agree 100% GRE1, I had my touchy day when I started this whole debacle a few days ago. Perhaps you are having one today, Glenn? I can see why you interpreted her words as you did, but I don't think Minnie meant it that way. I misinterpreted her earlier post which was what got this whole thing started. Minnie, I'm pretty sure I understand what you meant. And thank you for "extending the olive branch". Glenn is right on one count. We need to end this, but not because of what you said. It just doesn't pay to flog a dead horse and that seems to be all we are doing now. Sherry & Ken, I am so, so, so sorry about this mess. I do hope you have been able to glean enough facts to be able to help you decide. It does sound like you are starting out right by going day-to-day and monitoring the situation closely. By the way, today was Ken's first treatment, wasn't it? How did it go? Perhaps instead of answering here, you might want to start a new thread!?! Brian, Perhaps you should have locked the thread. We just can't seem to get this right! Perhaps it is time to do as Eileen and Glenn suggested and put this thread to bed! We can all just agree to disagree! Now I will be waiting for the other shoe to drop and someone to jump down my throat, Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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