| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 |
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | There are some of us here who have had the entire tongue removed.
Life goes on pretty well, all things considering and is preferential to the alternative .
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Hi Tammy,
Your post is somewhat heartening.
The unknown: it's hard to think of how life could be without a tongue.
* suppose no talk
* breathing?
* eating via GTube?
* cleanliness of mouth?
* teeth?
* mouth at-rest
* seems suction is a "natural" at-rest; no suction?
The mind considering / *pulling* towards suicide is in itself frightening and astoundingly painfully saddening.
Finished 1st new chemo round early yesterday and doc said appointment in 2 weeks; Yikes, I'm not eating and confused with various mouth sorenesses and pain.
How do I survive the 2 weeks and if there is still pain, how much does that point to surgery or just stopping all this.
Clearly, I'm frightened - anxious - trying to predict.
Thanks everyone, sorry for the negativity.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Walt, you are among friends here. Its ok to be afraid, to vent, rant and blow off steam. We will listen and do our best to come up with tips and ideas to encourage you.
So sorry you are going thru so much!!!!
Wondering if you are able to check out working with a therapist. That may help you to find a way to consider having a promising future even if you do face some limitations.
I know all too well how difficult it is living with a handicap. Mine is very visible. I have become severely disfigured due to going thru oral cancer 3 times, the last one was what did me in. Life is much different for me than from how I lived prior to getting cancer. To be honest with you, in alot of ways my life is much more meaningful now. I spend a couple hours a day helping others which also helps me by taking my mind off my own problems. Ive learned to adapt to my issues and live with them. Eventually you will adapt also. I know its not easy but you can adjust to your new life and still make a decent life for yourself.
Hang in there Walt!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Thanks Christine!
Currently hardly eating or drinking.
Mouth sore. Burns, hard to swallow.
Did Cream of Wheat in hospital.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi- I don't have a tongue and life is till very good. You can live without it and it will be OK. You will adapt. Feel free to ask me anything...
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Miss kate's awesome as are any of the survivors here who've had extensive eps surgery.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Miss Kate, thanks for the encouragement. Found a very complete *Tongue* web site that is dental based: Search this link: http://www.rdhmag.com/articles/print/volume-24/issue-8/feature/the-tongue.html for: "Life without a tongue". Quit descriptive and it sounds like very current description of the State of the Art. Is it possible that the world of Dental Work has a functional edge on addressing this problem? Also, I have a link to a University doctor who sounds to have developed a significant grafting/fabrication technique. I'll add a link to that later.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | [quote=misskate]Hi- I don't have a tongue and life is till very good. You can live without it and it will be OK. You will adapt. Feel free to ask me anything... [/quote]
Not sure what to ask.
Sounds like no meals, no talk, no social.
What's left? Typing, I guess.
What about breathing?
What about resting?
What about transplant?
Anyone doing Stem cell research?
Last edited by waltersaegir; 11-08-2012 01:16 PM.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Walt you are getting ahead of yourself. Seems like you are worrying about a procedure that may not even have to be done. But , should you need a total glossectomy plus or minus whatever ( depends on where the tumour extends too, or not ), you will be ok.
If you only have a total glossectomy you will breathe in the normal way same as everybody else.
Kris eats, well swallows liquids.
He has major dental issues post rads and trismus, but that is improving.
There are good apps you can download onto an IPad that will speak what you type. ( Speakit app ).This is a tad slow but is ok. You should be able to talk with the help of a speech therapist . Try holding your tongue still and talking. It is quite intelligible..
Honestly try not to worry about things that may not happen.
If they do, I can honestly say life is still great and well worth living.
Thinking of you,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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