| | Joined: May 2014 Posts: 4 Member | OP  Member
Joined: May 2014 Posts: 4 | HI MY NAME IS JULIE AND I FOUND THIS SITE IN A GOOGLE SEARCH. I AM TRYING TO LOCATE INFORMATION ON LOWER JAW FLAP SURGERY.(AM NOT EVEN SURE WHAT ITS CALLED) FROM PEOPLE WHO HAVE ACTUALLY BEEN THROUGH IT. MY DAD IS A 9 YEAR BASE OF TOUNGE CANCER SURVIVOR (SQUAMOUS CELL CARCINOMA-SP). BUT HAD A TOOTH PULLED THAT LED TO ORN AND NOW AFTER HBO THERAPY IS FACING THIS SEEMING HORRIFIC SURGERY. I HAVE READ AND CAN SEE HOW TRULY HELPFUL THIS "SITE" COULD BE IF I CAN FIGURE IT OUT.  ANY AND ALL HELP WOULD BE SO TRULY APPRECIATED. THANK YOU.
Julie
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there - there are a few here who've had it here and are doing well. I'm sure they will be along to give you some advice. It's not an easy surgery and from what I understand it's best if they use a leg bone to rebuild the jaw as the titanium they tend to use can be rejected. My best advice it get a top surgeon to do the work. And welcome - congrats on your father's survivorship. Take care and best of luck
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: May 2014 Posts: 4 Member | | OP Member
Joined: May 2014 Posts: 4 | FROM WHAT I UNDERSTAND THAT IS WHAT IS PLANNED ON BOTH ACCOUNTS, LEG AND SURGEON. EVEN THOUGH THE ONE WE REALLY WANTED ISN'T IN HIS "NETWORK" THE ONE WE ARE GOING WITH IS HIGHLY RECOMENED. THANK YOU SO MUCH I WILL BE WATCHING AND WAITING.
Julie
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Julie, welcome to OCF! Ive had the mandibulectomy. I will be happy to answer any of your questions.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Julie,
Might an old man request a favor of you? Please locate your caps lock key and disengage it. Thank you very much!
And I highly recommend whatever Christine tells you about your father's upcoming surgery! She definitely knows all about that subject.
Good luck to your father with his surgery, and thank you for being here for him!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Mar 2014 Posts: 22 Member | | Member
Joined: Mar 2014 Posts: 22 | I've had the surgery also, though mine was unsuccessful. I had it in Denver. I'm happy to answer any questions. Where will you be doing the surgery?
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | | Joined: May 2014 Posts: 4 Member | | OP Member
Joined: May 2014 Posts: 4 | Well I am kind of worried now but we are in Denver. His doctor will be Dr.Campana and will more than likely be done in Porter Adventist. I am so sorry that it wasn't successful for you. What does unsuccessful mean? Could you give me some advice? I would really appreciate it.
Thank you for your reply.
Julie
| | | | | Joined: May 2014 Posts: 4 Member | | OP Member
Joined: May 2014 Posts: 4 | Brian,
I went to your blog, I have never actually been on one before! I am not a techie type person. You are a huge inspiration. I am going to get my dad to check it out too! The courage it took to live it is sometimes so down played by people who haven't been there. I can honestly say we haven't seen the worst yet by far but it has been no stroll in the park either. Thank you for giving hope to others!
Julie
| | | | | Joined: Mar 2014 Posts: 22 Member | | Member
Joined: Mar 2014 Posts: 22 | Julie,
I had Campana too! Sent you a PM.
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
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