#16599 11-28-2004 12:39 PM | 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 | Jack,
Welcome to the neighborhood! It is so awesome to meet you and so encouraging to hear 8 years as a survivor!
May you be blessed many ways and thanks for finding us. I look forward to hearing more from and about you.
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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#16600 11-29-2004 02:53 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Jack,
Welcome to OCF. You found out early on what many of us here have also discovered -- if your doctor can't readily identify and treat an abnormality in your mouth, it's probably time to find another doctor. You're also right about how different it was to go through this experience with no internet resources available -- information about oral cancer was pretty scarce (a couple of little pamphlets in the hospital waiting room).
You mentioned that you still talk to your doctor once a year but don't live near him anymore. Do you also have regular in-person checkups with an ENT or oral surgeon who knows about your history? Once you've been through this battle, it's really important to have an ongoing medical team who can monitor your situation year after year and look for any unusual developments. Radiation is often referred to here as the "gift that keeps on giving" and some of the long-term effects take years to show up.
Good luck -- and I'm glad you found OCF.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#16601 11-29-2004 04:38 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Jack!
Glad you made it on the site! Now you can see how important having an 8 year survivor is to all of us! Jack is a cousin of my brother-in-law and is the very first person my husband talked to that had this disease. Jack's input and story helped me get through the first year of treatment before I found this site. Just knowing someone that had survived treatment was help! Having a survivor in the family gave me hope!! And I'm dragging you along to our next reunion too! Love, 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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#16602 11-29-2004 10:29 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Great meeting you and hearing your success story. Its an inspiration to the stage 1V folks.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#16603 11-29-2004 11:16 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Jack,
Welcome and it is nice to hear your story. I was also stage IV and have been doing fine for two years. I am getting married next month and my fiance made me promise that we will have at least 20 years together...so 8 does not sound like quite enough to me. Let's all of keep it going and set all kinds of records for survival!
I agree with you about this website. When I was at my lowest point, just after radiation treatments ended, I discovered the wonderful people on the OCF forum, and got a lot more support, understanding and information here than I ever got from anyone at MD Anderson.
Keep doing well,
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#16604 11-29-2004 01:54 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Jack What a joy to read your uplifting story - 8 years is wonderful. I have found the internet and this site in particular very supportive during my journey. I can't imagine how it must have been not having access to the information which is now easily available. Thankyou for posting your positive news here. With love and congratulations from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#16605 11-29-2004 06:05 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Thanks everyone for your warm welcomes. Thank YOU Kris for giving me the information about OCF. It sure was a joy to finally meet you, your wonderful husband and the rest of your family.  Maybe one of you could walk me through the following. I was rummaging through some drawers today and found a book that I would like to share with everyone, but I don't know where to go to let everyone know about it, or if it has already been posted. The name of the book is "The Cancer Conqueror" An Incredible Journey to Wellness by Greg Anderson. It actually came out about a year after my surgery and radiation, but reading it gave me a completely different outlook on those radiation treatments, to which I had some rather negative remembrances and thoughts, and to the whole recovery process. Thanks again Love to you All Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
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