#27845 10-25-2005 09:51 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Hi Guys. I have found myself in the midst of a recurrence and I, along with my doctors, are in the process of trying to formulate a treatment plan. I would appreciate any constructive comments or suggestions that may help me think of things I may not have considered or been aware of. In any case, the bad news: I have local recurrent disease with a 2cm tumor at the base of my tongue just above the larnyx. This was confirmed via biopsy last week. No metastasis have been noted and a chest xray shows my lungs to be clear. The location of the tumor deep in the base of the tongue is part of what makes this so problematic. The surgical salvage protocol calls for the complete removal of both the tongue and the larnyx. Besides the extremely debilitating nature of this surgery, it only offers a two year survival rate of 12%. I'm not a fan of this solution. I met with my radiation oncologist yesterday and he was not a fan of re-irradiation either with or without chemo. His primary concern was that the cancer already survived chemo and radiation and what we would have left would be the most robust cancer cells of the lot. This along with the potential side effects of re-irradiation cause him great concern, although he said he would do it if I decided I wanted it. He thought the best chance of success was surgery followed by radiation, which takes us back to total debilitation and only 1 chance 10 for two years. I meet with my medical oncologist tomarrow and my surgeon again on Friday. The feeling I'm getting from my medical team is that the situation is very grim without much hope. I know I am too close to the problem to be thinking completely clearly. I would appreciate any suggestions, esspecially if they involve a newer approach to treatment. Thanks!
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#27846 10-25-2005 11:37 AM | Joined: Mar 2002 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2002 Posts: 45 | Brett,
I don't have any personal advice as my case is/was much different that yours but I do know that there are many people here pulling for you and willing to give you their personal insights and advice. I'll keep you in the thoughts and prayers of our family.
Dave
Stage I diagnosed 9/18/2000
Dave
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#27847 10-25-2005 11:49 AM | Joined: Oct 2005 Posts: 10 Member | | Member
Joined: Oct 2005 Posts: 10 | Brett,
Are you at a major comprehensive cancer center? Those are the best places to be and all may have differeent opinions.
Praying for you.
Leslie | | |
#27848 10-25-2005 12:18 PM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Thank your for you kind words and prayers. I was initially and I am currently being treated at M. D. Anderson. I have been researching Photodynamic Therapy (PDT), which looks promising. I'm stilling hoping for other ideas and frank discussion. Thanks.
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#27849 10-25-2005 12:21 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Brett;
Keep a positive attitude and try not to be overwhelmed by all the information and choices thrown at you.
I will be praying for you as well
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#27850 10-25-2005 12:42 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 | Brett, I can only offer prayers and they are on their way. 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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#27851 10-25-2005 01:34 PM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Brett,
Wishing you fair skies and following winds, I hope you find what you need to make life good again.
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#27852 10-26-2005 05:36 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Brett
Hang in there, my hubby`s original Dx and yours are very similar.
I wish you well.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#27853 10-26-2005 08:53 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Brett, there's always hope in these situations. My thoughts and prayers are with you. God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#27854 10-26-2005 11:11 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Can't think of what to say but to echo the positive thoughts and prayers the others have given. We'll be with you - - and our collective strength will mirror the aggressiveness of your action in fighting this.
All our best
Tom and Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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