 
#39642 05-22-2006 05:33 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello M,
While away from the forum, I missed getting into this PEG debate (this time) I too was one of the ones that made it without a PEG. There are few subjects that provoke strong opinions more than PEG tubes. I am happy that David was able to do it without. Congratulations on completing RT and I hope David recovers quickly from the other effects.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#39643 05-23-2006 03:25 AM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi M,
Great to know that David managed to go through the treatment without a peg and just lost 5 kg. I also belong to the minority group without a feeding tube and feel myself really lucky. I can understand David's anxiety about the first follow-up meeting. My best wishes to him that the radiation treatment has worked 100% on the tumors. The light at the end of the tunnel is awaiting you two!
Karen
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#39644 05-23-2006 04:54 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Friends,
For those of you contemplating the PEG tube, I've said it before and I will say it again. The PEG tube was my best friend. The procedure to put it in was easy and once swallowing became impossible it was my only source of nutrition for many months. Even after I was able to swallow liquids, I still depended on it for most of my nourishment and used it as well to take medications.
I worked with it under my clothes, played golf wearing it, and took showers with no problem. Yes, I had to learn to sleep on my left side, but that was no problem either. I hung that bag everywhere from a nail on my office wall, to a tree at a campsite, to a hook in a bathroom stall.
I still lost 20 lbs. and cannot imagine how I would have made it without the PEG.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#39645 05-23-2006 02:57 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | The PEG was our best friend too. It kept John alive and out of the hospital and I didn't have to watch him slowly wither away. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#39646 05-23-2006 03:21 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | There aren't many of us that can do it, but congrats on getting thru it without the peg. I'm another one that made it but had no surgery other neck dissection so had no trouble eating before radiation. No one ever recommended that I get one. I hope his check up is all clear and you guys can get on with your life. He did good.
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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#39647 05-23-2006 03:44 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | This "Peg thing" is really starting to annoy me. 1st, I do not think "congratulations" are in order. That's like congratulating someone for surviving cancer without surgery or radiation or chemo. Going "Pegless" is NOT a badge of courage- it is a part of treatment that is doable for some-but not others- would you tell your Doc-"No chemo or no radiation or no surgery" if your battle with this disease had just begun? Would you refuse a peg if you were going to have a trach? I think we are giving the wrong idea here. Surviving the treatments to cure this disease is battle enough without making it seem like some folks ae stronger or braver than others. Just my opinion-folks. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#39648 05-23-2006 05:08 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 |
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#39649 05-23-2006 05:24 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I think Amy makes a very good point about congratulating anyone for making it through radiation without a PEG. From what I see, getting through radiation without a PEG is done all the time. I also see people with a PEG that have a horrible time.
Getting through radiation is the TRUE and ONLY badge of courage, and I can promise you that the badges are the same color whether you had a PEG or not. So, let's be kind and sensitive to new posters and allow them the freedom and comfort of choosing what is best for them without feeling like they are "less" brave or not as strong as some.
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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#39650 05-23-2006 06:02 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 |
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#39651 05-23-2006 11:27 PM | Joined: Jan 2006 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 32 | Wow!!! I was not expecting a debate again!!!
My posting was just an update following an important decision that David made at an early stage of the disease and at that time still under the choc of the news. Since so many of you have answered to my first posting back in January and write to me personnally, I wanted you to know where we were at.
For me this forum is a source of information, learning from people who have lived their experience before we did, sharing our experience and slowly is becoming a place where I can help in return. I can understand that for some of us this forum responds to other needs. It is always better for everyone's health when we stay constructive though!!
Although I can read strong opinions and exasperation regarding the PEG's subject, I wanted to let you know Mark that I have not taking your comment "congradulations" as a statement of courage or being brave or whatever but just as words of understanding, support and "keep in there". Nothing else. I can also understand that we do interpretate messages differently but like everything else in life, I think it is quite important to be able to read between the lines!!!
Lets all breath-in and breath-out on this one..shall we !!!
ciao,m
Wife of David, 44yo, SCC-BOT-R) mod. rad. ND in Jan 06. 35x standard RT from Feb-April 06. Recur on L) side same level in Sept 06 with mod rad ND. 1/48 node positive SCC + 1/48 positive micropapillary carcioma consistant with thyroid CA.
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