| Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Christine,
I'm at the two year mark now, but only 11 months from my Nerve Graft. When they did my reconstruction they knocked out my facial nerve, so before they do any cosmetic they wanted to try and restore function. I've got a few more months before they determine whether the graft will restore function to see what other reconstruction/cosmetic (facial sling etc..) surgery that needs to be done.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hey Karen
i just dropped in to say how much i admire you,Christine and Eric.your ongoing battle against the worst after effects of this pernicious disease is a testament to your strength and bravery,and i am sure an inspiration to all those souls who have a never ending reminder of the deadly gift of surgery and radiation.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks for your thoughtful words Liz.
So far, no dramas. The bruises are turning a dark shade of yellow - mustard.
I feel fresher today. I went to my friends Hair Studio last night and she washed my hair without getting a drop of water on any of the bandages wrapped around my lower face, neck and throat. Usually she waves the water sprayer around like a baton and I get drenched. Job well done and much easier than trying to wash it over a basin or something, we tried that when I had the trachestomy, and it didn't work.
Karen
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I'm SO happy!!! Before the dressing was changed today, I got a look at my lower face. I can't believe it's symmetrical again. I'm actually beginning to look like the old me. I honestly didn't think I would ever look in the mirror and feel like I'm seeing me again.
Today the stitches were removed from my stomach where some fat was taken. Because of the many surgeries and damaged skin from the radiotherapy, the stitches around my chin, throat and neck will be in for another week.
After the jaw reconstruction in 2008, my lower lip had been pulled down so my lips didn't sit together as normal. Also, due to some nerve damage one side of my lower lip drooped more than the other side. With the skin graft and fat injected last week it has lifted up my lower lip and evened out that side of my lip, which in turn should help control the drooling. The skin around my neck isn't pulling as much as it was, it feels much better.
So far everything is looking good and feeling good.
Karen
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Fanbloodytastic Karen, I am so HAPPY that you are HAPPY Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Great news Karen! I'm so happy for you.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Its nice to hear some good news Karen. My warmest and best wishes for even better results once the healing finishes. x
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Karen, Your good news bolsters my faith that anything is possible! I just had a followup with my PS and he really shot a hole in my expectations. Told me I'm the worse case he's ever seen and I shouldn't expect much. Just the day before I met a woman who had very much the same experience as we have had and she looked wonderful (considering). My PS absolutely refused to believe it when I told him about her. I'm sure he would find your success unbelievable as well. I need to convince him to become a member of OCF so he can read these success stories for himself. You are an inspiration!!
Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | That's so great, Karen. My ENT was telling me there was a surgery he could do that would straighten my mouth out but I wasn't in the mood for any more surgery at the time. Maybe I'll consider it now. You've gone through so much more than I have and you're an inspiration to me.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Karen,
It is so wonderful to read your post. Your excitement and happiness with the results of your surgery are so apparent. You certainly deserve a break! I am so happy for you!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
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