| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Todays appointment was both good news and bad too. Im not Stage 1 this time around. Its Stage 4 since its invaded my lower jaw bone. The doc said he probably will not need to use my leg bone for my jaw. He is making a steel bar to use. He also said that it will be the bottom jaw only that needs to be taken. Im upset by the details today. My jaw and ear hurt like heck. I was given ear drops to help my ear and Im seeing my ENT again before the big day. It will be a long 6+ hour surgery and will take skin from my stomach area for my new cheek. Thanks for the positive comments 
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Thank you for posting - been worrying about you all day. Not to worry about Stage IV - ask Brian how long ago they told him he was Stage IV!
It sounds like the surgery will be a bit easier on you than you had anticipated. I am glad that you are / were mentally prepared for whatever would need to be done, but I'm sure it will still be a long recovery. Make sure you get all the pain meds you need until the surgery. My last surgery I was in SUCH pain right up until the surgery that I was very happy when they put me out to do the operation.
Any talk of additional chemo/radiation, or will they wait for the pathology before deciding?
I know you can do this Christine. You are not walking this path alone - we are all hear with you. LEAN ON US.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I'm glad they will only have to do the lower jawbone. Hopefully that will make it a little easier for you. Any node involvement? Will they be doing a ND? You should have no trouble getting around if they don't use your legbone. Hang tough, Sue
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.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Dear Christine, so sorry you have to go through this, it stinks!
How are your nodes? Is removing the lower jaw bone the only recourse? I'm fairly new at this so not very knowledgable
about treatment. My thoughts and prayers are with you. We will send lots of positive energy your way
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
Sorry to hear the outcome of your appointment.
Thinking of you
Karen ((hugs))
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Thanks for posting an update, sorry it was such an icky day! Am hoping that it is good news that they will leave your leg bone in-tact.
Six plus hours is quite some surgery...how long will you be in the hospital to recover?
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Christine,
We can all take heart that even stage IV OC isn't the end of the world anymore. I am amazed at how much can be done and how so many survive in spite of all the brutal treatments and life altering challenges from this "affliction."
It is rotten that you have had to give up so much in this latest recurrence. You are most fortunate to have the support of Sue. It be wonderful if we all could be able to give such practical help to each other.
Please check into the pluses and minuses of the metal bar vs fibula with your ENT and dental professionals. Although the surgery for the replacement with the bone is very complicated and the recovery time is long the results are very good. I was told by several specialists that the metal bar can present problems later. From my research I found that the long term effects were minimal. I recommend that you search our forums and the main site for more information.
With best wishes and prayers for an easy, quick and complete recovery,
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Christine,
It has been awhile since I had time to read posts. I am taking the time this morning before I head off for my first day of school. I am so aorry about the news you received yesterday. I will praying for a quick recovery. Thanks for keeping us all updated. I will be checking back on you periodically.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Christine,
My cousin had mucousal melanoma four years ago and had a titanium plate inplanted in her cheek bone and looked GREAT...two months later, went to her nieces wedding after a 5 hour flight. They can do wonders...:)
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I am sure you know all of the words that can be said about your treatment and diagnosis, so I won't even try. As usual, you are in my prayers and thoughts daily and I wish nothing but the best for you. Just keep being the Christine I have come to know and respect and you will whip this stuff again. I really wish I could be there for you. Circumstancces prevent that right now tho. Your forever friend.. Jim
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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