#20119 04-05-2006 03:36 AM | Joined: Apr 2006 Posts: 3 Member | OP  Member
Joined: Apr 2006 Posts: 3 | Diagonised by byopsy 3/27/'06, squamous cell carcenoma. surgery done 3/30/'06. 8 or 9 teeth, some bone in front, the tumor at side of tongue and some of my tongue, when into the trash. smoked for 38 years, changed to roll ur own, just to save some money, took less than a year for cancer to show up. still in shock, and guess very scared, so ashamed because I have put my wife and me both in this position. she has always deserved better. not ever been one to worry, but this tongue thing, thick and hard to use is really a bugger to deal with. I know my surgery is less than 1 week old, but anyone have any suggestions or words of encouragement till I see my surgeon in another 5 days. Any replys will be appreciated. THANKS, papa. | | |
#20120 04-05-2006 03:47 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Thomas, My tongue was the same way a week out from surgery. It really does get better, though. Hang in there! You didn't say if you had a neck dissection too--did you?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#20121 04-05-2006 08:23 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | Hi Thomas,
I didn't have the same thing as you, and I know you are suffering now, but it will get better.
My wife didn't desrve my cancer either, none of our spouses or us deserve cancer. It just picks on a few of us. We are lucky enough to be living in a day and age where something can be done.
Hang in there, it will heal.
Steve Daib
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#20122 04-05-2006 09:15 AM | Joined: Feb 2006 Posts: 136 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2006 Posts: 136 | I just had part of my tongue removed in January - and it took a full 4 weeks before the swelling in the actual tongue went down - but it did eventually go down. Good luck.
SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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#20123 04-05-2006 11:46 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Papa
Dont waste energy feeling guilty ...you need it all for your recovery.
All your wife needs is to know is, you are fighting this with everything you have.
She loves you and wants you safe not sorry!
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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#20124 04-05-2006 03:11 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Papa- a fellow Arkansan here- you have a ways to go before your tongue feels better so concentrate on getting the best nourishment you can because that will help you heal. Are you going to have radiation? Tell us more about you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#20125 04-05-2006 04:32 PM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Hi Papa. I know what you mean about the tongue...mine was so big for a while. I couldn't bite down at all for several weeks. It was almost a month before I could close my mouth without biting the danged thing.
I would also like to hear more about your experience. What stage is it, did you have the portion of your tongue replaced with other tissue, did you have a neck dissection? You will find folks here who can help with all kinds of information, especially if you have to have radiation.
Take care and get better for you AND your wife!
Jennifer
Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
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#20126 04-05-2006 05:50 PM | Joined: Apr 2006 Posts: 3 Member | | OP Member
Joined: Apr 2006 Posts: 3 | OMG, I feel so inaquate. By ya'll's replies, I realize my own ignorance at not even bein' able to tell u what stage, location, etc., I am . Seems like I have a lot of catching up to do. Am 54, ex-smoker now goin on second week. Gotta start somewhere, surgeon states we have GOOD MARGINS on all sites, tongue , gums, and bone. And I feel so humbled by all the replies from each and everyone here, my best to all. I hope time will allow a more personal reply to each of u. THANKS FOR THE SHOW OF SUPPORT!! | | |
#20127 04-06-2006 01:31 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 | Papa,
Welcome to the neighborhood and don't fret about what has brought you to this point in life. Sit back, relax, heal and fire away if you have any questions. As you see, many have been exactly where you are today and many will be by your side to help you the rest of your journey.
Nobody really deserves what you or your spouse are going through right now and nothing can change what has happened. Keep your focus on the road ahead.
Wishing you a speedy recovery.
What part of Arkansas are you from?
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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#20128 04-26-2006 07:57 PM | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2006 Posts: 101 | Papa,
I just wanted to tell you to encourage your wife to get to this site as well, there are a ton of us caregivers on here, and we are all willing to help support her through this. This is certainly not just happening to you, and she is going to need some real support when you arent able to give it to her. We are a good bunch of people here and want to be here for the two of you!!
Jennie
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
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