#16128 08-05-2004 09:31 AM | Joined: Mar 2003 Posts: 18 Member | OP  Member
Joined: Mar 2003 Posts: 18 | I am returning to this site for the second time to give my experience strength and hope for you.
I was first diagnosed with tongue cancer back in December 1998 and since that time my life has been a series of many ups and downs!
Surgeries:
1. 40% Glossectomy of tongue
2.Left and right neck dissections
3.Left arm skin graft
4.Chemotherapy (Cisplatin) 4 doses
5. 38 radiation treatments
I was a heavy drinker but I didnt smoke
I bit my tongue chewing gum once and it never healed. I think a big contributer was stress from life contary to popular belief.
Anyway i got my strength from God and from fellow survivors who inspire me and give me courage to fight another day.
I now have my speech back after 6 months of therapy but still have difficulty swallowing and with dry mouth.
I had a Petscan done 2 weeks ago and they said it was clean with areas of ambiguity...whatever that means.
Anyway I hope this helps someone and I look forward to hearing more survival stories!!
Bob | | |
#16129 08-05-2004 10:47 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Bob, Welcome back. Glad things are showing clean on the Petscan. I don't know what "ambiguity" means either, but if they aren't pushing you for more tests or biopsies, guess its OK. Will pray that your tests continue in the good news area and that you stay healthy. Thanks for posting the good news.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#16130 08-05-2004 11:04 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Bob, glad to hear your petscan was clean. That is awesome news. I had the partial glossectomy (2/3) n May 2002, forearm flap, radical neck dissection, two lymph nodes positive for c, 7 weeks of radiation. I, like you, get my strength from God and family and fellow survivors!! This OCF Board has been a great source of comfort to me. I appreciate life much more now than I ever have! God Bless You!
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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#16131 08-05-2004 11:37 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Bob,
Good to hear your test results were good. That's news that we all strive for and celebrate here. I had a total glossectomy in July 2003, right and left neck dissection, 5 nodes positive, abdominal flap, 3 rounds of cisplatin and 37 rad treatments. I've just "graduated" from speech therapy and started eating "real" food in July. So for me things are progressing better than I expected and I can only hope they continue to do so. I've discovered such good friends and found a lot of comfort here on this board. Keep the good reports coming!
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#16132 08-06-2004 12:23 AM | Joined: Mar 2003 Posts: 18 Member | | OP Member
Joined: Mar 2003 Posts: 18 | Thanks to all for replyingso promptly.
Its good to know that I am not alone as this disease can be very solitary.
My faith in God was crucial to my recovery as well as my dog.
Does anyone know if there is a chat room set up here to talk acout this C stuff?
God Bless
Bob | | |
#16133 08-06-2004 02:12 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | p.s. Bob, my dog has been a source of comfort to me too, he is my little Buddy, I love him dearly!
Nancy, you are doing wonderful, good for 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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#16134 08-06-2004 04:49 AM | Joined: Mar 2003 Posts: 18 Member | | OP Member
Joined: Mar 2003 Posts: 18 | Thanks for your support
We are all victims and survivors at one point and whatever the procees is that improves our pain ...then so be it.
I am no different than the next person with cancer.
I just wanna realize some dreams before I die
Bob | | |
#16135 08-06-2004 05:38 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 | Hi Bob,
It is good to have you back and to hear of your good news. May your dreams be plentiful and fruitful!
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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#16136 04-13-2007 08:08 AM | Joined: Mar 2003 Posts: 18 Member | | OP Member
Joined: Mar 2003 Posts: 18 | I guess there is no chat room for this subject? So we can discuss our various problems openly and with some heartfelt support | | |
#16137 04-13-2007 10:00 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Bob and welcome back! We have discussed having chat rooms before and the cost would be prohibitive. But there is no reason that would couldn't do ICQ or one of the private chat rooms. But the forum is a place to discuss various problems and find support (even heartfelt most times), in your case, "after treatment issues" would would an excellent place to start.
Oh, and a summary of your survival story would be very welcome in my survivor thread.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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