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#44499 01-31-2005 08:49 AM
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Tonya Offline OP
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My brother is undergoing surgery today to remove 1/2 his tongue, the right floor of his mouth and the right jaw bone. The doctors came out about 9:30 a.m. and said he was doing great. It is an 11 hour surgery so we have a while yet. The tumor was bigger than expected and they will be removing the jaw bone from the middle of the chin to his ear. The plastic surgeon is working on removing the bone from David


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44500 01-31-2005 09:16 AM
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Tonya: My thoughts are with your, your family and your brother. You have been a great support to your brother & family. I know because I remember your very first posts - I am the sister of an oral cancer survivor and I knew what you were going through. You have done a great job getting your brother good treatment. My thoughts are with you all. - Candace


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
#44501 01-31-2005 10:52 AM
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Tonya
I had a 12 hour operation, no bone grafts but lots of skin grafts, prayers and good vibes..
Sunshine...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
#44502 01-31-2005 02:25 PM
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Tonya,
Hope all is still going well and that surgery is over...it's hard at first what you see but the swelling goes down and drainage tubes go away and things get better. Prayers and thoughts are with you and your brother.
God bless,
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.
#44503 01-31-2005 03:53 PM
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Tonya Offline OP
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Thanks for the kind words of support. I can really use them right now. David is out of surgery. The tumor measured 4 inches. They tried to save all they could but had to remove 5/6 of the tongue and don't expect him to every speak again. They also had to remove the right jaw from chin to ear, a little bit of the upper jaw, almost all the floor of his mouth, and part of his throat. They did a neck disection and removed the lymph nodes. The floor was rebuilt with chest muscle and the jaw with a part of the leg bone. However, due to chemo damage from a previous medical institute, the vessels were almost destroyed on the right side of his face and even with the plastic surgery that side will be "saggy". They said swallowing will be very difficult if not impossible and he will remain on a feeding tube from here on out. They told my mother that if David hadn't been this young they wouldn't have attempted this surgery at all. I'm glad the surgery is over - he's been in so much pain. Our efforts now will be on keeping his spirits up. I know foremost on his mind will be his speech. I believe he will be able to talk someday because he is such a strong person. It may take years, but I won't give up on him. I have to remember all these things are actually small blessings, we still have him and hope for a bright future, though I know from the shared stories on this site that the challenges ahead will be great. Does anyone have any ideas about the speech options? What about those machines they put on your voice box that allows you to "talk" through the vibrations? Are there any hand held computers available yet that allow you to type your message and then it says it? I know I am getting ahead of myself, but I also know my brother will be so worried about how this will effect his job and I just want to reassure him there are options. Well, it's been a long day as you all know and I will sign off now. I'm sure you will hear plenty from me in the weeks to come as we struggle to deal with this.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44504 02-01-2005 07:59 AM
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Tonya,

I don't have any answers for your questions, but you will find a way. May God bless and keep you and yours.

John

#44505 02-01-2005 09:03 AM
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Tonya
Please try to stay positive...
Sunshine.. 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
#44506 02-01-2005 10:42 AM
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Tonya:
Your family has our prayers. Prayer changes things!
God bless!
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#44507 02-01-2005 01:41 PM
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Tonya,

I hope you can get some rest now. You will need a lot of strength in the weeks, months, years to come. Your brother is lucky to have you.

Talk to a speech pathologist about the technical solutions you're looking for. I don't know for sure, but I'll bet some of them do exist... I know any Mac can speak a typed sentence, but I imagine there are some devices that turn a few keystrokes into whole words/sentences. Seek and you shall find.

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#44508 02-01-2005 05:09 PM
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Hi Tonya,
I had the jaw surgery your brother had, with the jaw replaced with the bone from my leg. I had it done in April of 2003. I was told I would need speech therapy to learn how to talk again. I was talking pretty much normally the day they took out the trach, surprising everyone. I did not have any surgery to my tongue so your brothers case will be more complicated, but don't give up hope of him talking again.
Please keep us updated on his progress.
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.
#44509 02-02-2005 06:00 AM
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Thanks for all your support. I am feeling better today and ready to fight this vicious disease once more. I have found a wonderful device that will let David type what he wants to communicate and it will say it electronically. He can even use it on the phone. I am talking to speech consultants about it today. This is not the end of the road, just a big tree that fell across our path and we will find a way around it. The doctors said David is doing wonderful. He is healing well and they even had him "sitting", or more like leaning back, in a chair yesterday with supports around his head. We will see him Friday (the hospital is over 1,000 miles from here). I hope he is out of ICU by then so I can sit with him during the night. I'm going to take my laptop for him to use in the meantime. His motor skills are still shaky, but maybe they will improve during the week.
Before this is over maybe I won't be just asking for help all the time and will be able to assist others on this forum.
Thoughts to all of you and thanks for your help.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44510 02-02-2005 08:30 AM
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Tonya, you keep that positive attitude!!! You have no idea how much that is going to help your brother get through this. He is lucky to have you for a sister! I am fairly new to this forum, my husband finished radiation treatments on his throat 2 months ago and that's when I found this website. I feel so blessed to have found this site, there are so many caring people here who really want to help. I have learned so much here too. I pray that your brother will win this battle. As I've learned from the people here, don't EVER give up!!!

Best of luck,

Shelley


Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
#44511 02-02-2005 08:51 AM
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Tonya Offline OP
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Thanks! I just received the news that they will have him walking by Friday and home in 2 weeks! Amazing - of course he will still have to go back every other week for 2 months. Those will be long trips, but worth it.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44512 02-02-2005 11:26 AM
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Tonya, glad that both of you are feeling better.

I am curious where the 1000 miles takes you? (that is a pretty big area for me to guess.) smile

Take care


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.
#44513 02-02-2005 11:33 AM
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Tonya, good news on the speach front. Glad you were able to find something to help your brother with speaking. It sounds like he is pretty strong to be up and about and sent home so quickly after such a long and arduous surgery. God bless you all.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#44514 02-02-2005 11:51 AM
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tonya. glad to hear your brother is doing so well . stay as positive as u have been

my best wishes
maz

#44515 02-02-2005 12:01 PM
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Tonya, thanks for sharing the good news about your brother. My thoughts and prayers go out to both of you! 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---
#44516 02-03-2005 03:45 AM
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Tonya Offline OP
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Mark,
We are in the very top of Texas and he is at MD Anderson in Houston, near the bottom. We leave tomorrow. I am very eager to see him.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44517 02-03-2005 07:13 AM
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Tonya
Just want to add my prayers for you and yours, may God be with you.


Joan


JOAN
#44518 02-07-2005 05:05 AM
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Thank you all. We are back from Houston. He is doing very well, considering. A lot of swelling but his wounds are healing very nicely. He is up and walking some. He's having problems keeping down the liquid food they are putting in his feeding tube so that is awful when he gets sick. He has a trake (sp?) and we are learning to take care of that. Hopefully he will only have it a couple of weeks, if all goes well. I am trying to emerse myself in sign language books so I can began teaching him and our family when he gets home. My husband gently reminds me that our toughest days are still ahead. On one level I am aware of that, but on another I know I will have no idea how rough until those days are here. I hope that makes sense. I asked his wife what kind of time they had given him (it's the control part of me - I need to be prepared), but she said she didn't want people talking about that or counting his days. She's right. So I will keep reminding myself how grateful we are for today and learn to be at peace with that.
Thanks again, and please keep David and his little family in your prayers. You will each be in ours.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44519 02-07-2005 08:54 AM
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Tonya
Glad to hear David is coming along well. Does he have a port? my Hubby could not stand the tube feedings and they ended up feeding thru the port, much better.
I can fully understand his wife`s reaction, I actually had a "friend " tell me, " He`s not going to make it, you know that don`t you ?". I wanted to slap the stuff out of her. Well we showed her so there!
Keep in touch .
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#44520 02-07-2005 11:20 AM
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Tonya
Is your brother using a slow gravity feed system? I could only tolerate syringe feeds that took 15-20 min every 3-4 hours or everything came hurling back, just a suggestion...
Sunshine... 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
#44521 02-07-2005 05:19 PM
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More about PEG feedings. Helen is correct about slow is better. He should also be sitting up as though at the table when fed, and stay sitting up for a while after finishing. The gravity feed system I used had a speed control, so it was possible to have the liquid just about slow dripping if the patient wished. Your brother is very fortunate to have such an involved and concerned sister!

#44522 02-07-2005 06:45 PM
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Tonya, glad to hear that he is up and about! As to the "time" they have given him, there is NO one on this earth that can answer that question. He very well could survive this and out live his children. Do a search here on statistics and you will find many good discussions about the subject. Every day is a blessing for any of us. No one knows how many minutes we get. Don't dwell on that at all.

Take care


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.
#44523 02-07-2005 11:04 PM
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Tonya,
I just wanted to add to what Mark said that his treatment protocol sounded like a curative plan to me, not palliative. He was blessed to be able to have treatment at the top rated comprehensive cancer center in the world - that would make his odds very good.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#44524 02-08-2005 08:53 AM
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Thank you all. He is on a slow feed drip. They are trying another brand today. He was "backed up" due to all the pain meds and now is doing better. He didn't throw up last night or today at all. YEAH! A speech therapist there is putting David's wife in contact with a man who had his entire tongue removed about 1 1/2 years ago and is speaking well today. DOUBLE YEAH! I know with all my heart that if it physcially possible David will regain his speech. Their little girl is with them. She got to meet "Pedro", a puppet who had a treach and an I.V. The conselor unwrapped the bandages on the puppet's neck and explained David's surgery to her. Yesterday David coughed and she jumped up and grabbed the suction tube and started cleaning around his treach, like she had seen us do. Kids are amazing.
Best wishes to all.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44525 02-09-2005 12:08 AM
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Hi Tonya,

Just wanted you and David to know that talking without a tongue is possible! I had a total glossectomy, left and right neck dissection in July of 2003. I also had a feeding tube and a trach. I had both of these removed after 8 1/2 months and also worked with a speech therapist once a week for about 4 months. I have a palatal drop mouth prosthesis which helps me to speak pretty darn clear! I work full-time and people seem to understand me just fine. Although eating is a challenge, it's very doable as I'm able to eat just about anything I set my mind to (chicken, steak, seafood, pasta, etc.). So all in all I just wanted you and David to know that it is possible to eat and speak after extensive surgery to the tongue. I won't kid you, it's a long, hard and often rocky road but it's very doable with some determination. Tell David to hang in there, it does get better!

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#44526 02-09-2005 03:02 AM
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Nancy, I think you are awesome! 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---
#44527 02-09-2005 03:22 AM
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I have some wonderful news I wanted to share. David had a speech evaluation yesterday and they said he could make vowel sounds as well as m, b, p. My mom gave him the phone and he said, "I love you." I cried. It wasn't completely clear, but there was no doubt what he said. The speech team has also put him in contact with a man who lost even more of his tongue than David did and after 1 1/2 years speaks well. I truly believe if David is doing this well now, one week after surgery, he will be able to accomplish more than we ever hoped. We had received so many miracles just getting him to where he is, that I never even expected this. I know it will still be a long road, but this was the boost by brother needed right now. His little 4 year-old daughter was so excited and that was the first thing she told my sister, "My Daddy said he loves me." Thank you for your prayers and thoughts and please know you are all on my mind and in my heart.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44528 02-09-2005 03:28 AM
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Nancy - Sorry, your post didn't show up on my screen until after I posted, my computer does that sometimes. Anyway, thanks you so much for sharing your story. I have longed to hear from someone who has faced the same odds and overcome them. They have talked to David about the palatal drop mouth prosthesis and I'm sure he will be trying that. I am so happy for you and you are such an inspiration. I will tell David your story. I know it will encourage him. He's never been afraid of hard work and I know he will give his recovery everything he has.
Thank you again, Nancy.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44529 02-09-2005 08:36 AM
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Awesome news Tonya, will keep you and David in my prayers! He is doing wonderful!!!!!! 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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Tonya
Thanks for the update, tell David to keep up the good work, IT CAN ONLY GET BETTER..
Sunshine...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
#44531 02-09-2005 11:35 AM
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Tonya,
I am so glad your brother is making so much progress so quickly. It is a great boost to the morale and will help him to continue to improve. I have a permanent trach so if he has questions on things like showering or clearing mucous, email me at [email protected]. I posted stuff once, but don't know if you can find. Meantime, tell him we are all pulling for him and sending good vibes his way.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#44532 02-09-2005 06:08 PM
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Tonya,

There is light at the end of the tunnel!!!! Thanks for sharing such a personal posting. It uplifts us all to hear good news. Your happiness
jumps off the posting. He is a lucky man to have you as a caregiver. Keep up the good battle.

Danny Boy


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
#44533 03-03-2005 03:58 AM
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David and his wife are home from the 2nd week checkup and all looks great. I signed him up for this site last night and told him and his wife what a great source it is for information and just to know you're not alone. He's doing well and we are excited about the hope the future holds. He is a survivor.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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I'm so happy to hear that good news Tonya. How is he doing with walking? It took me some time but I walk pretty good now.
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.
#44535 03-03-2005 05:10 AM
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Hi Tonya; Please tell David and his wife that they have a new set of neighbours, the Oral Cancer family, who look forward to getting to know them.
What a wonderful success story we have heard thanks to you "Sis"
May fair winds follow all of you on the road to recovery.
Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#44536 03-03-2005 08:06 AM
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Thank you. David is walking great. The doctors had to remove his lower jaw and part of the top and there wasn't a place to attach the bone to so they took soft tissue and rebuilt the jaw with that. No having a bone graft has really speed up the healing of his leg. The wound looks great and is healing well. His jaw looks great, too. They did a great job. When my aunt commented on how great his doctor did and that you wouldn't even be able to see a scar, he wrote, "Scars don't bother me, I'm just happy to be here." That's when I knew we were on the road to recovery. Thanks again.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44537 03-04-2005 03:52 AM
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
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Joined: Jan 2004
Posts: 1,116
Great news about David, Tonya, so happy to hear it. I like his attitude. Each day truly is a GIFT!
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---
#44538 03-04-2005 01:46 PM
Joined: Jul 2003
Posts: 1,163
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Posts: 1,163
Hello Tonya,

Nice to read such a positive posting!!! There is light at the end of the tunnel!! Keep up the good fight David. I love your attitude!!

Danny Boy


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
#44539 03-05-2005 05:26 PM
Joined: Dec 2003
Posts: 528
"OCF Down Under"
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"Above & Beyond" Member (500+ posts)

Joined: Dec 2003
Posts: 528
Hello Tonya, David and your families, I am so glad that you are all improving after such radical surgery. Your attitude, love for each other and smiles come through in your posts. Love to you all and best wishes from Helen


RHTonsil SCC Stage IV tx completed May 03
#44540 03-06-2005 05:45 PM
Joined: Jan 2005
Posts: 11
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Joined: Jan 2005
Posts: 11
Dear Tonya, David, and your families,
My prayers and wishes for a quick recovery and a long and prosperous future. You're an inspiration already.
Lawrence


Co-caregiver for friend with T2N2BMO squamous cell carcinoma of oropharynx.
#44541 03-16-2005 05:44 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
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Tonya,

When I read the comment from David I could feel the tears welling up in my eyes. I know how scary it must have been to face such a rough surgery after all he had to endure up to that point but I just had a feeling that his trip to Houston would help immensely. I am overjoyed to know that he gets to hold his wife and his daughter in his arms as he travels the road to recovery. What a blessing and how wonderful it is to have a sister like you to persist and keep things moving like you did. Your rewards in life will be great.

Tell David that I am thinking of him often and glad he is doing as good as he is.

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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