#18400 08-08-2005 01:49 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | chefron
Member
Member # 2289
posted August 08, 2005 11:03 AM
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Good morning, everyone. I am brand new at this, so please bear with me. I am a 54 year old male, who was diagnosed with squamous cell carcinoma of the floor of the mouth and mandible (lower Jaw) last July. I had surgery replacing my infected areas with a free flap (the fibula and surrounding muscles from my left leg were used to make a new jaw bone and floor of the mouth). I went through extensive radiation therapy (6,900 rads) for six weeks, twice a day, every day. I was told I would be able to have dental implants in my new jaw within a year or shortly thereafter. Now they are saying my radiation levels were too high, and they may have to wait for another YEAR OR SO. Has this happened to anyone else? I am so frustrated, I could scream.
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Posts: 3 | From: Southern California | Registered: Aug 2005 | IP: Logged
Moved here by mark
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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#18401 08-08-2005 02:29 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 Chefron, your diagnosis and tx. sounds alot like John's, altho you had more surgery than he did. His surgeon told him to expect at least a year's wait beore he could start on dental work. He is also very frustrated. Wish I could tell you more. 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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#18402 08-08-2005 02:40 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Hi and welcome. I have no answers for you but you will be in my "good" thoughts. Hopefully someone will stop in who can help you.
Take care and blessings,
Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#18403 08-08-2005 02:58 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello chefron and welcome to the Oral Cancer Foundation. You have been through alot since dx. I don't think anyone can predict recovery time
in a very precise way. Each of us may react differently to the same treatment? Go figure!!!
All I can add is to be patience. This battle is a life time thing.
Do you have a peg tube in or are you able to input enough orally to maintain your weight?
There have been many days when we all felt like you do now. It passes. We all have to adjust to our new post-cancer lives. What other option do we have?
Hoping for the best for you,
Danny Boy
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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#18404 08-08-2005 03:41 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hello Chefron,
I had the same diagnosis and surgery as you, other then any floor of mouth cancer. I had it in my lower left jaw bone. The jaw bone was removed and rebuilt as yours was and I then had radiation. I was also told one year and implants would be good to go and that would have happened at that one year mark if I could afford to pay for them out of pocket. My insurance company has been like a storm, willing to pay, not willing to pay, now not willing is their final answer. I do know that the deciding factor for me to have implants was the thickness of my jawbone, it had nothing to do with the amount of radiation I had. I did my 30 dives of HBO (Hyperbaric Oxygen Treatment) and my jawbone has the thickness it needs. I was told that this surgery was done so that I COULD eventually have implants. Using the bone from the leg is what makes it possible.
Is it possible for you to get a second opinion on this?
Hope this helps,
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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