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#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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Tonya Offline OP
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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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Tonya Offline OP
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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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Tonya Offline OP
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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.
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