| | 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 | Cindy: My heart and prayers go out to you as you go through this, yet again. You CAN do this. Hang in there and keep us posted. We are with you.
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: 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 | Im riding along with Cindy tomorrow for her PET. Seems like this has been found very early which should be easier to treat.
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: 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 | Tell her best of luck tomorrow will have fingers crossed for her. Hugs
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Praying for good results on your PET - guess you don't have any news yet? Let us know and thinking of you.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 47 | Also been thinking about you, many hugs and post when you feel up to it.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | Hi Cindy, I had a trech and it got down to hole about the size you are describing. My ENT said just keep a light piece of gauze with tape at the top and bottom, not on the sides, so it can get air but stays clean. It seemed like it took forever to get that little hole to close. But eventually it did. I asked about stitches and my doctor said just be patient and it will close. But that was my experience, I hope with yours it will be somewhat like mine so you don't have to go through anymore trauma. Take care!
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | I am scheduled for surgery Tuesday. It was showing up on the PET, but more so at the skin level and not at the trachea. Dr said he will not know what to expect till he gets in there and can see what is going on. Said frozen sections will not be helpful since the area was radiated. Flap will be done, and more neck dissecting on both sides. Could also be a notch out of the trachea, could be a portion of the trachea, could involve nerves and could involve my larnyx as well. Thoracic surgeon will be there also. Dr said it is so rare to have a re-occurance at the trachea site and these types of surgeries re not common. Will reply back when I am up and around again. Once I can remember all of my signature line, I promised Christine I would post it. This will be cancer surgery #4.
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | 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 | This kind of thing always makes me wonder if they worked dirty to clean... Its common sense to work the other way around - clean to dirty - (so you don't have random ca - cells hitching a ride to a clean area) but it doesn't always happen. That was one of the things I first asked my surgeon when we discussed surgery - he looked at me for a second and then asked what I did for a living. I told him film work, and tech work for the school board - to his day he still doesn't know I have a medical background oh and his response was neck to tongue (at the time neck was thought to be clean) though the first thing he did was put in my trache - best of luck Tuesday. Hugs!
Last edited by Cheryld; 10-15-2012 06:19 AM.
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: Jun 2010 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | Bronchoscope revealed cancer has spread into the inside of my trachea, so the procedure was stopped. Had a second opinion at Beth Israel who concurred that the trachea portion and my larnyx must now be removed. I just cannot get my head wrapped around this.
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | 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 | Cindy, please add a signature so members can better help you. Click on "My Stuff" link then on the drop down click on "edit profile", scroll to the bottom and type in the white box, click submit.
I have sent you a few emails with people I know who are willing to speak to you over what you have coming up.
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 | | |
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