#15460 05-20-2004 07:53 AM | Joined: May 2004 Posts: 2 Member | | Member
Joined: May 2004 Posts: 2 | Hi all. First time here. Diagnosed with a malignant melanoma of the tongue in December 2002. Surgery in early 2003. Months of speech therapy. Found having this type of cancer difficult but found not having any type of support system even more difficult. As I go through the rounds of different exams / doctors/ x-rays/ct scans/bloodwork every few months I'm filled with anixiety that friends and co-workers just don't understand. Docs can offer no explaination or reason for the cancer. It's taking awhile but to find this board but here I am. Hope I'm at the right place.
Mary K.
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#15461 05-20-2004 08:12 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Welcome, Mary. You have indeed been though a lot and will find kindred spirits here. And yes, you are at the right place. Ask any questions may have, and feel free to call on your experiences to answer the questions of others. Another survivor is always welcome here! | | |
#15462 05-20-2004 08:19 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Hi Mary K!
We are glad you found us. I had Squamous Cell Carcinoma of the tongue and had most of my tongue removed. Having a cancer diagnosis can make you feel so alone. I too have no explanation for my cancer from my doctors except bad luck. You are not alone. We are here to help in any way we can. I am currently undertaking a different battle against distant reoccurance in my lungs. I check this site at least once a day and have found many kindred spirits.
Let me know how I can help you in your journey to survival.
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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#15463 05-20-2004 08:36 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Mary K,
Welcome - I am a caregiver and have found this board a wealth of information and a place to ask anything and get honest, heartfelt help. We don't always know the answers, but we really do care for each other as we are all in the battle in one way or another to survive! I only wish I had found the board when Dan was first diagnosed. I find lots of help here in questions to ask the docs and meds to ask about, etc.
May God Bless you on your journey to health!!
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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#15464 05-20-2004 08:43 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Mary
Glad you found us.. hope we can be of help and support.. we are also pretty good if you are just having a bad day.. we all know about bad days.. vent all you like here..
prayers love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#15465 05-20-2004 08:49 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Welcome Mary....Glad you found us!! I know exactly how you are feeling, trust me.....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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#15466 05-20-2004 10:02 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 Mary K,
Welcome to our world! I am sorry you have had a tough time but if there is anything you need, feel free to ask, tell or respond to questions from us!
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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#15467 05-20-2004 10:43 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome Mary K.
You indeed have found the right place. You are a survivor!!! You can offer insight on your treatment and recovery. You can also ask just about anything and someone will have an answer for you. Welcome again!!
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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#15468 05-20-2004 11:15 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Mary K,
I just found this board a couple weeks ago. It's been so instrumental in my getting me through many things. They will take extremely good care of you. You're definitely in the right place.
Sabrina | | |
#15469 05-20-2004 02:12 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 |  Hello Mary K I know you will find comfort and inspiration on this board as I have in the past year. Welcome. from Helen with love
RHTonsil SCC Stage IV tx completed May 03
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#15470 05-20-2004 03:22 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Mary!
Congratulations on your cancer survival! Most here are Squamous cell people but we are not discriminatory. You might tell a little more about your treatments so we can relate.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#15471 05-23-2004 12:10 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Hi Mary
Welcome to our community, and contratulations on your cancer servival from me also. There was a poster here a few months ago who'se father in law had oral malignant melanoma, they also felt sort of out in the dark because of the rarity of that type of cancer. Curious about the type of treatment you recieved.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#15472 05-23-2004 01:43 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | You have come to the right place to talk, vent, ask, help just about everything you can think,,so can we,,,i am new to this site as well,, hope we can become great survivors together....Always Miss Vicki | | |
#15473 05-23-2004 05:23 PM | Joined: Mar 2003 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2003 Posts: 62 | Welcome Mary, and once again congratulations on your cancer survival. Happy that you found us and you won't have to feel alone any longer. As the others have said this is the place to ask any questions you may have or vent if you feel the need to.
David | | |
#15474 05-24-2004 06:28 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Let me add yet another "welcome to the boards"!!
I discovered this wonderful community in January right during the middle of my radiation treatments... There are some wonderful, wonderful angels here... So feel free to ask, vent, cry, celebrate, etc. here... You are guaranteed to have listening ears and supportive shoulders...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#15475 05-24-2004 07:53 AM | Joined: May 2004 Posts: 2 Member | | Member
Joined: May 2004 Posts: 2 | Thanks for the warm welcomes. I think my docs (primary, ENT, oncologist, etc) even find it frustrating because they are unable to give me much info on malignant melanoma of the tongue, causes, survival rate, treatment options besides the surgery, etc. Besides very regular visits sometimes I worried I'm going to show up for a doctor's appointment but at the wrong doc  checkups, bloodwork, and then body scans every six months there isn't much they offer but to try and stay on top of it and request that I stay on a very healthy diet and exercise. Any changes in the way I feel or any lesions I'm to go in asap. But it will be nice to at least have someplace to go (these boards) when I need to talk, vent, cry, laugh (I joke with the docs that I've been poked and prodded, etc so much but too bad none is for enjoyment). I also tell my children that I'm one of those special one in a couple of million people to get this. Mary
Mary K.
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#15476 05-24-2004 08:15 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Mary
As carer and a patient I worry that one of us will finish up at the wrong docs.. UM.. could be good..lol.. he could have my op.. but I might find his prostate cancer a bit difficult...
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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