#56832 08-27-2005 05:01 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Just wanted to post an update. John's surgery to remove a floor of mouth tumor, was on Apr.21, 05. He had a bilateral neck dissection, part of lower jaw bone removed, part of tounge, removed and the remaining tounge tethered to the floor of his mouth, and all but 4 upper front teeth removed and a PEG inserted. He was in hospital 5 days[and released before I wanted because I was scared-but he was chomping at the bit :rolleyes: ] He did very well at home after surgery. IMRT Rad tx. started in 6 wks. 30 txs. The rad was much more difficult than the surgery and "laid him low after wk 3. There have been some scarey days due to dehydration and weight loss and major fatigue. But on Aug 24, his peg was removed and he has felt progressively better each day. He has the same mouth issues that most here have, is taking water with him everywhere,fights the thick mucous and saliva problems and things not tasting right-BUT he is eating, he says "gumming" real food and is awake and moving around most of the day. The most serious problem now is that the Radiation has exacerbated his arthritis and his hands and legs are swollen and very sore. He started on a daily dose of steroids Monday. All in all, he feels like he will be back to "new normal" soon and has a great attitude. I cannot find the proper words to express to the people at OCF my gratitude for the support, kind words, advice and expertise that I found here as we started and progress thru this journey. This site has saved my sanity and helped John all along the way. God Bless. 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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#56833 08-28-2005 01:28 PM | Joined: Mar 2005 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2005 Posts: 35 | I am very happy to hear this about you and John, I too had my tube taken out last week on the 25th.I didnt have the big mouth surgury that John had but did have some lymphnodes removed. I hate to have had to fight that along with thee radiation and my hat is off to John for his toughness. | | |
#56834 08-28-2005 03:18 PM | Joined: Apr 2005 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 68 | I am happy to hear how well John is doing. I'm sure that your love and positive attitude helped him deal with all of this. I agree, OCF is the best site out there.
Take care
Melissa
Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
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#56835 08-29-2005 05:52 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 | Those positive words are music to my ears! Thanks Amy! 
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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