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#68863 01-30-2008 12:22 PM
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I'm new to posting on the internet but I've been on this sight alot recently and have gotten alot of support without anyone even knowing it. My husband, 47, was diagnosed with stage 4 oral cancer in July 2007. He had been complaining to several doctors for almost a year about a blister on floor of mouth accompanied by swollen glands. He was told he had a blocked salivery gland. Finally we found the right doctor who took one look and knew it was cancer. He had surgery at Columbia University Hospital where they removed half of his lower jaw and replaced it with leg bone. He also had floor of mouth removed and replaced with leg tissue. He had about 28 lymph nodes taken, several of which were positive for SCC. Following a lengthy recovery he had seven weeks of cysplatin and radiation. A couple of weeks into it another swollen node popped up and was found to be positive. After the chemo and rad he had a second surgery and was found to have a metastasis to right lung. We will be starting Erbitox this coming week. Sorry to be so long-winded but i know you'll all understand.


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 #68864 01-30-2008 12:53 PM
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Hi Sue Marie- So sorry to hear of your husbands recent battle with scc. Also dissapointing to hear that he was mis-diagnosed. I was as well. If there is anything I can do or you have any questions please let me know. I know this is very very hard to deal with.

Kate


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #68869 01-30-2008 01:27 PM
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Sue,

So sorry you both are having to deal with this but we are here to help as much as we can.


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 #68885 01-30-2008 03:08 PM
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Thank you so much for your kind thoughts. We both feel like this has all happened so fast. We have three teenagers and they have been blindsided by this also.


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 #68888 01-30-2008 03:37 PM
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Hello Suemarie. What a load you all have to deal with. You have come to the right place for support among people who will understand like no others. Did your husband have CT scan before treatment started? Just wondered when the lung mets was discovered? I have heard some positive things about the erbatux chemo in arresting the disease, although I understand it is not a cure. I send you strength and courage to face the days ahead, try to stay positive. Ask for help as you need it.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
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I get rads daily for 4 weeks and the Erbitux once a week, I wish your hubby well thru his journey with this stuff. Keep posting and us up to date.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Sue,
ditto to the above comments. You are in the right place for support... God bless you and your family. I'm new myself, but I've learned already that this is a sincere, caring bunch we have here.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
JBNich #68915 01-31-2008 02:43 AM
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My husband had a CT scan prior to the second surgery and that's when they found the mets to lung. He already had the date to remove additional node from neck and they did a bronchioscope to diagnose spot in lung. If the Erbitux is not a cure does it just keep it at bay for awhile? The doctors won't give us a staight answer. I understand that they can't predict the future but I feel like we're not getting all the facts either. Anyway my husband is far more positive than I am although I put up a good front. He is truly an amazing person.


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 #68918 01-31-2008 03:05 AM
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i think the most important thing is not to loose your faith and courrage. it is a hard situation, a difficult fight i know but we will be the winners. never give up hope. i think it's the most important weapon.your husband needs you by his side more than ever before. try to think positive. hope for the best.


sophia
suemarie #68923 01-31-2008 03:19 AM
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Hi Sue,
Your husband is my age and had the very same surgery I had in 2003. I had a recurrance last August, on my tongue, and had to have more surgery. So far so good. I can only imagine how he's feeling, being so young and being in such a precarious position.........wife, young kids still at home, so much in life he still wants to do. I can also emphathize with your teenagers, we have three, although they are the youngest of our seven. Our girls were blindsided by my new cancer this year. Tell your husband to do some soul searching and if he puts his mind to it, he can learn how to live for the moment, enjoy the day in front of him rather than worry about tomorrow. I know it sounds trite but trust me, once I allowed myself that luxury my life turned around. I have spent the past few months building so many memories with my family, memories I might not have taken the time to do if I spent all my time worrying about dying.

Put your doctors backs to the wall and tell them you want definitive answers, or at least the closest truth they can give you. And never, ever give up hope. With all the new treatments we just never know how it will end up.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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