#16529 10-18-2004 11:44 PM | Joined: Jan 2004 Posts: 14 Member | OP  Member
Joined: Jan 2004 Posts: 14 | I have been out of pocket a while, probably truth be known, ignoring what I have been through and taking a break from thinking about it! I suspect that might not be an uncommon manner of coping...
At any rate, it has been about ten months now...I have had three surgeries, still have no teeth, and all reconstruction has been placed on hold because my thyroid became overactive (Grave's Disease) which the doc says is probably a combination of heredity and this year's stress triggering it.
I have been in good spirits most of the year, and continue to be. I feel several things have contributed to this, prayers primarily, but also the support of the people on this board. It helped greatly to read and hear the thoughts of others who have walked this same path.
That is really all I wished to say. I am here, will try to drop back in more often. At some point I would like to become active in helping bring attention to this thing in some way. I am starting to think about that...about how to make this all count for something.
Thanks for listening,
jj
Squamous Cell Carcinoma, floor of mouth. T2 N0 M0. Diagnosed January 2004. Partial glossectomy, right neck dissection, removal of floor of mouth, gum, bottom teeth, flap from forearm, skin grafts.
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#16530 10-19-2004 12:51 AM | Joined: Jul 2004 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2004 Posts: 28 | jj, you struck a nerve in me with your post....mostly I'm a "lurker".
I was dx in Feb 2002 and had the floor of my mouth removed, along with a little bit of the under tongue. My plastic surgeon, not knowing that I'd have a problem with implants after the radiation, failed to build a lower gum line....I'm flat as a board down yonder.
My brother is a dentist and after MDA dentist couldn't do anything, he tried the suction cup denture......No luck there.
So here I am without teeth, enjoying my cigs and wine.......just can't wait for the next "smushable" meal.
Good luck to you.
Sandy | | |
#16531 10-19-2004 12:53 AM | Joined: Jul 2004 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2004 Posts: 28 | jj, you struck a nerve in me with your post....mostly I'm a "lurker".
I was dx in Feb 2002 and had the floor of my mouth removed, along with a little bit of the under tongue. My plastic surgeon, not knowing that I'd have a problem with implants after the radiation, failed to build a lower gum line....I'm flat as a board down yonder.
My brother is a dentist and after MDA dentist couldn't do anything, he tried the suction cup denture......No luck there.
So here I am without teeth, enjoying my cigs and wine.......just can't wait for the next "smushable" meal.
Good luck to you.
Sandy | | |
#16532 10-19-2004 08:12 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 | JJ,
Glad to see you are back and hanging in there. Just the fact you are looking at how you can take your experience and find some way to make it count is a good sign of where you are in your recovery process. It seems like we go along living from appointment to appointment and then suddenly we find ourselves looking farther down the road. I hope they get the thryoid issues resolved and help you get back on track with some of the reconstruction.
Best wishes,
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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#16533 10-19-2004 09:44 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | JJ - Sometimes it takes a year to get your life to a point where you are over the shock of treatment and can look back to how you made it. On making it count for something - I sponsored a team at the local Cancer Relay for Life event as a way to honor those that went before me and to help get money for research for a cure. When you think of all the people that have gone through clinical trials so progress can be made on finding a cure for this disease... well it is humbling to realize someone had to be the trial to come up with the treatment plan they are currently using. If it doesn't work to cure us, guess it is our turn in hopes someone down the road will benefit.
Joining OCF and renewing your membership annually helps with getting early detection info out to the dental offices and getting the news out to survivors to come to the site for support and hope to get through treatment. This is certainly a club no one really wants to join, but since we are here we might as well be productive :rolleyes: - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#16534 10-19-2004 11:02 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Welcome again JJ
glad you are coping well...I have been in a bit of a slump nyself for a few days...it happens.
Take care
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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#16535 10-19-2004 02:34 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome back JJ,
It seems you are handling things quite well. Your statement about getting the word out hits a nerve with me also. I know Brian needs help in running this website and we also have to raise funds to accomplish early detection. Thats the only way we can help raise the survivol rates.
Hope you can find some type of dental work that would allow you to eat reguler food. I had no teeth pulled so I can't ay I know what it's like.
Best Wishes, 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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#16536 10-19-2004 04:48 PM | Joined: Oct 2004 Posts: 2 Member | | Member
Joined: Oct 2004 Posts: 2 | Hello Everybody,
This is my first time to OCF and I can't believe all the info on the site. What a great website! I was diagnosed 7-7-98 SCC right side of tongue, stage III, Hemiglossectomy, radical neck, brachytherapy, external beam w/ concurrent chemo. I'm happy to say that was over 6 years ago with no major problems to speak of. Until... 6 mo ago when I developed a small ulcer (3mm) on the opposite side of the mandible. The area healed w/in 1 week but then re ulcerated 2 times after that. Oral surgeon concerned about ORN and poor tissue in the area. August '04 started HBO and had biopsy of the area that was questioning possible re occurence or chronic ulcer. Presently , ulcer is healed and the mouth feels great. However as of today 10-19-04, the repeat Denti-Scan is now suggesting re-biopsy of the area. STRESS TIME!!! Would love to hear from any of my fellow ORAL CANCER FRIENDS.
LIVE STRONG, JOHN | | |
#16537 10-20-2004 03:35 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | John!
Welcome to the site! Six year survivor is something to celebrate!! We will hold on to that thought and pray this area in your mouth will totally heal and stay healed this time around! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#16538 10-20-2004 10:22 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi John and welcome! Will pray for complete healing in your mouth and God Bless you on your 6 years survival, always great to hear! 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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