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#85130 11-30-2008 01:24 PM
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Hi am back to posting after more than six years. Thaat is how long my husband lived as a cancer survivor until last month. He was diagnosed with cancer ot the right tonsil in 2002. Last month he was diagnosed with cancer of the tongue and jaw. The pain has been intense and was first thought to be a dental problem. His teeth have been a mess since his radiation. Well long story short he had a biopsy and now he is scheduled for surgery on December 24 and two weeks in the hospital. This forum was so helpful last time and I hope to find some friends to with whom to share my experience. Best of luch to all of you who are in treatment and their caregivers. elem

11mackay #85131 11-30-2008 01:47 PM
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What kind of surgery will your husband have? Mine had half of his lower right jaw removed and replaced with bone from his left calf. He also had about 1/3 of his tongue removed as well as the floor of his mouth. I'm sure they will biopsy his lymph nodes as well. Has he had a PET scan yet? Six years is quite a long time to have been clear-that's wonderful.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #85136 11-30-2008 02:05 PM
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I wish our welcome back were for congratulations on six years clear, rather than this new diagnosis, but the welcome is here just the same.

I imagine there are some changes/improvements to treatments and maybe the handling of some after-effects in that six years that you are as yet unaware of. I'm sure the people here will be able to catch you up on all of them.

I'm sorry to say welcome back,

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
Lani G #85143 11-30-2008 04:26 PM
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So sorry you are looking at more of this. My husband is just under 6 years post treatment, so I can really empathize with how you must feel. Keep us posted with how you are both doing.

Best,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Anita210 #85144 11-30-2008 04:44 PM
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So sorry that you are back, but happy that you found the people at this site supportive enough to come back to. I am recovering from surgery due to cancer of the tongue and left jaw which recurred after surgery/treatment for floor of mouth cancer. I sympathize with your husband about the pain. It was horrific. I could not eat, drink or at times even talk due to the pain.
I hope that his surgery goes well.


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #85145 11-30-2008 04:52 PM
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my wish for your husband is that this round is the last, that it is beaten quickly and that treatment is better than last time. going thru it once is bad enough ... twice should be against the law. i am sorry to hear of your husband's recurrence and my thoughts are with you. having surgery the day before christmas is not fair either ... but i guess this disease doesn't know what fair is or means.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


azcallin #85173 12-01-2008 08:11 AM
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First off really sorry for the re occurrence. You said that your husband's teeth had been a mess since radiation. What type of rad did he receive? And did he use the fluoride daily since treatment? Have his doctors given you their reason why it might have come back? What are they suggesting treatment wise now?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #85202 12-01-2008 04:57 PM
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Thanks to all of you who welcomed me back. Can someone share with me how they did after tongue and jaw surgery? How is the talking and eating? The doctor said he might not replace jawboe to make swallowing easier. How long is the recovery? My husband cannot have any more radiation and chemo is not an option. He will also have lymph nodes removed same as last time. First time was on the right side this time left side. Her was told he would need speech therapy. Elem

11mackay #85204 12-01-2008 05:21 PM
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Elem,

I'd like to try to answer you, but I'm a little unclear. Is it that the Dr says swallowing will be easier if he DOESN'T replace the jawbone? How much and what part of the jawbone will be removed?

I've had most of my tongue removed, but I still have most of my jaw. It was more like they just shaved the top off of it.

Lani

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
Lani G #85207 12-01-2008 06:10 PM
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I had my free flap (no bones involved) done in June and just started really eating in November -- The recovery took longer than I thought it would -- My throat is still somewhat constricted.

It strikes me as strange that I hired this guy with a sharp knife and his band of cutthroats to knock me out, hack off a large part of my tongue, slit my throat, hack a big chunk off my wrist and sew that into my mouth!! It seemed like such a good idea at the time....

Last edited by Pete D; 12-01-2008 06:14 PM.

Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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