#43111 04-05-2004 07:30 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Well I haven't been with you that long. I had what I thought were pains due to my PEG tube, but it seems there are several suspicious spots in my lungs that the oncologists seems to believe are lung metastisis of my tongue cancer. Chemo did not work the last time we tried prior to surgery to shrink the tumor at all. He says there would be no point at throwing more of the same at it. He is suggesting a clinical trial. Any experience from anyone out there? He said my prognosis is poor, typically if the result to a clinical trial aren't good then 6 months to 1 year. Any help at all would be appreicated.
I am stunned!
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#43112 04-05-2004 08:15 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Lynn,
So sorry to hear your news. I sent you a private message, please check it and let me know if I can do anything. If you don't receive it please email me and I'll respond.
Take care,
Dinah | | |
#43113 04-05-2004 08:46 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Lynn,
This is bad news, indeed. I sent you a private note with some links to on-going trials. If you didn't get it, let me know.
-Brett
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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#43114 04-05-2004 09:05 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Lynn,
I am so sorry to hear your news. Are you using doctors here in Dallas? I will certainly be praying for you and your family. If there is anything I can do, please let me know.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43115 04-05-2004 01:58 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Lynn.
I am so sorry to hear of your condition. My thoughts and prayers are with you and your family. Hopefully there is a clinical trial you qualify for. I hope for the best for you. I wish I could say something meaningful at this diffucult time for you. Please know we are praying for you.
Dan
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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#43116 04-06-2004 01:15 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | I am using an oncologist at Texas Oncology right now, but may be back at MDACC shortly. I have a biopsy on Wednesday just to be certain that it is cancer.
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#43117 04-06-2004 01:56 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Lynn, my thoughts and prayers are with you...Keep Looking Up!!!! 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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#43118 04-06-2004 09:58 AM | Joined: Apr 2004 Posts: 18 Member | | Member
Joined: Apr 2004 Posts: 18 | Lynn
newbie here,but wanted you to know you are included in my prayers..HUGS | | |
#43119 04-06-2004 01:49 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Lynn,
Please know I pray for you everyday...hoping the spots are not cancer after all. I know the hipe you are feeling as we are waiting for CT and MRI on the 14th to see how the treatments worked on Dan's agressive cancer.
Please email me anytime if you still have my address. I take some antidepressants when I have an especially hard time...maybe you should think about some unless you already have them. It does help me, and then other times praying does the trick.
I can imagine it's so hard with that news...again miracles happen everyday, and I will definitely ask God for one for you and your family!
Love,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43120 04-06-2004 05:10 PM | Joined: Feb 2004 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 45 | Lynn,
Thinking of you and hoping for thr best.
Khaja
Khaja
SCC Base of Tongue Stage IV. Diagnosed 12/02
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