#46491 02-02-2006 04:43 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | In the interest of time[my bedtime] I am going to answer some specific questions. Minnie, the reconstructive surgeon told us that using the bone from the hip[in his experience] causes a lot of problems, is hard to shape and fit and he was having more success with titanium. This guy was voted[by whom I don't know]one of the Best Doctors in America according to a plaque in his waiting room. They wanted to use a graft from the left arm, but John's circulation was so bad in that arm they have elected not to . I am taking your post with me to the hospital so that I can question the position they keep John's head in during his "sleep state" Thank you. Damn, this is scary stuff  I think I will have access to a computer while we are there and I will be updating and probably asking alot of questions. Thank you all for being here. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#46492 02-03-2006 11:24 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Amy my friend...may all the stars be in the proper alignment and the Big Guy be watching over both of you.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#46493 02-03-2006 12:01 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Amy
If he is right-handed it it is doubtful that he will be able to use his right hand to write, they gave me a nerve block in my left arm (graft-site) and I couldn't feel a thing for 5 days, maybe a point worth asking about it will be very scary for him if he cannot communicate.
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
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#46494 02-03-2006 03:36 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | I'll put that on my list of questions Helen. The Docs won't wake him up until sometime Saturday, so maybe he'll only have 2 days of not being able to write.
I've just spent the last 1 1\2 hrs. reading past posts here after searching "titaniun jaws". Still feel very uneducated about them, which means I can't talk to the reconstructive surgeon very intelligently. So anyone out there who can give me questions to ask? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#46495 02-03-2006 05:05 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Amy,
I still wonder why they don't use the bone from the leg. It's the "treatment of choice" when jawbone is removed. Ask them about it, see what they say.
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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#46496 02-04-2006 01:46 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I wonder if the difference has to do with the fact that John's jaw has already been radiated? That might make that kind of bone transplant much harder than when it occurs before raidation.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#46497 02-04-2006 10:52 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Amy
Is John on any medication? Just a thought to ensure that the team is on board with everything while he is sedated...
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
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#46498 02-04-2006 02:53 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Helen and Minnie, The Docs have told him to take his bloodpressure and thyroid meds. on the moring of surgery. They have boosted the Prednisone some to help with the joint problems that he has had for some time. I spent several hrs. tody trying to find Titaniun replacements for jaw bone, but did not get very far. Guess I'm still looking in the wrong places. In fact I'm gonna post to that issue in General topics. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#46499 02-05-2006 02:30 AM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 156 | good luck amy and john , my prayers and thoughts will be with you onthe 9th , keep your chin up john everything will turn out fine with the help of god ..take care of yourself amy for johnssake there is a long road ahead god bless ...maz | | |
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