#62067 11-08-2007 05:00 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | How do you keep your day as normal as can be? I have a problem with my speech, eating, pain, where they took out part of my jaw bone. My neck,mouth and ear are numb due to the surgery. I was doing good for awhile, but now its getting harder, because it's all the time. I've had times where I'm not sure that I made the right call and did the surgery. Spellig? I had Squamous cell carsinoma, very invsive. They did a radical neck on both sides They took out 16 nodes all together. Part of my jaw bone and tonge
Jamie Ledingham
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#62068 11-08-2007 05:07 PM | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Jamie, it may be helpful to put part of your history in the signature to help people relate and provide appropriate reponses. (i.e. when was your surgery, any RT? etc) I am sure you will get lots of responses.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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#62069 11-09-2007 08:01 AM | Joined: Aug 2007 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 51 | It is hell but you did make the right decission. Just think of the alternative. It can only get better. Do you have a tube for nutrition?
Jim W. DX and treated May 1997 stage 4 tonsil cancer 40 radiation 2X daily at the same time 8 weeks IV chemo cocktail 5 types on 5 days off 2 days refuesed neck resection. 10 years clear now swallow function ceased May 07 after pneumonia.
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#62070 11-09-2007 10:29 AM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | No tube now. I can eat soft things only. I just get tired of cutting things up or eating soft things. My teeth are all gone now. They took the bottom ones out to get to the tumor, which was the size of a golf ball. The uppers had to go also due to the lack of saliva, enamel etc.
Jamie Ledingham
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#62071 11-09-2007 02:16 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Hi Jamie: What you have described thus far sounds very similiar to Buzz' diagnosis of SCC (mandible); Tell us a little more - we'll try to assist you in any way possible.
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#62072 11-09-2007 02:44 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Jamie, I had half of my lower jaw removed in June of 2006, and I know intimately what you're feeling.
Some of the things you describe (speech, eating, lack of teeth) can and do improve in a variety of ways. Other things (the numbness, dry mouth) often don't.
You adjust. It's the new normal, and you learn to cope with that, adjust how you do things a bit, but you cope. I know it seems right now that you'll never get used to it; you do though. We humans are very adaptable...much more than we give ourselves credit for. We adapt, and you will too.
Don't EVER question whether you made the right decision...you did. The Beast is cruel, and if left to do it's business, it kills...every single time. It's not anything short of horrible the way it kills, either.
You're here, you can enjoy the simple pleasures of life that we all take for granted. That in itself is priceless. For me, the love of my wife and kids, along with some councilling when things were really bad emotionally, got me through. You WILL adapt, and you WILL be thankful for have the chance to beat back the Beast. Hang in there...it does get better Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#62073 11-09-2007 03:12 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | first of all I would like to Thank everyone for their comments. I've always had some sort of control over most of the things going on in my life, Well that's over. I had the surgery on 5/16/06. and after 3 weeks in the hospital it made me realise that I've missed alot of the Little things if you would call it that, which I've been paying attention to every day.Back to the real world of this scan, that scan and that scan again, scope here, scope there, more blood no blood. It seems as though every test requires another one. I am trying to get a grip on it , it's just going slowly.
Jamie
Jamie Ledingham
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#62074 11-09-2007 03:13 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | Sorry I can't type or spell
Jamie Ledingham
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#62075 11-09-2007 04:19 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 | Dear Jamie, the "getting a grip" part is really tough. But those with alot of guts and inner strenght manage to do just that. You've been at this over 17 months now, and I'm sure it has worn you down, as it does every one of us who face this disease. I want to encourage you to keep looking forward- not backward- because your life is going forward in a new direction, maybe a tougher direction , but, hopefully, one you can manage. Remember, you still have control over much of your life [and you probably did not have as much control over your "old" life as you thought!]. So one hour, one day at a time you go from here. And please keep talking- there are lots of good folks here to listen. Amy in the Ozarks
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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#62076 11-09-2007 04:38 PM | Joined: Nov 2007 Posts: 5 Member | OP Member Joined: Nov 2007 Posts: 5 | I just don't know what I wuold do if they had to take the bone, the tongue. I think I would stop at point. I have 1/2 of my tongue now and miss some of the things that i could do before. Jamie in Ct
Jamie Ledingham
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