| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) |  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Yay Roger. Really good news on the larynx, it will make communication so much easier. Good to hear you at alive and well. Keep us posted.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Roger, congrats on a successful surgery! Best wishes with a speedy, painfree recovery.
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 | So glad they saved the larynx!!!! I assume the rebuilt your tongue which is terrific!!! hopefully you'll be sprung soon and on the road to a full recovery.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Roger, congratulations. You're a hero.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Thank you all! Yes, tongue was rebuilt with thigh tissue. Thigh is of course what hurts the most. I understand it was a pretty sophisticated job with a lot of nerve rewiring, but I don't know the details. It feels pretty "normal" but I am not trying to do anything with it.
Time for more rest!
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | A lot of breathing problems until yesterday. Tachycardia. Had some fluids and tests. Doing better today. Talk of possibly coming home tomorrow.
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | 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 | Woot!!! sprung! Hopefully you will get home and begin to heal. 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: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | Coming home today! Doctors are pleased with progress. What an ordeal, but at least I will be at home. So tired of being in the hospital, though it is a very nice one.
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2013 Posts: 32 | I am settled in nicely at home and feeling a little better each day. I expect to begin chemo in a couple of weeks, so the feeling good part will go out the window. I will probably also have another round of radiation. Nothing firm yet. I expect to hear next steps in a couple of weeks.
The surgery required was much more extensive than the PET scan lead the team to believe. In the short time since the PET scan, many more lymph nodes became involved. The tumor had grown from my tongue into my right cheek. Fortunately, there was still no bone involvement. I was in surgery over 15 hours. The surgeons were meticulous both with removing the tumor and with the reconstruction. They were very pleased - achieving clean margins throughout are are confident they removed the entire tumor.
My wife said she had a conversation with the surgeon who did the reconstruction about eating. The surgeon said I would not be able to be able to eat dry things like white meat chicken but would probably be able to eat dark meat. This was hugely encouraging. I was picturing blender everything, so entertaining the thought of solid food with limitations was beyond exciting. I know it will be some work to get there. I understand the surgeon spent a lot of time wiring up nerves to give my tongue some mobility.
I have said just as couple of words with my family and managed to make myself understood. A long way to go with speech too, but I can feel how it will be possible.
Male, non-smoker, very light drinker, age 56 at diag.
9/18/12 - Diag. tongue cancer, left lateral border HPV 16+
9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed
11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.)
12/26/12 - Rads compl.
1/18/13 - Cituximab compl.
3/13/13 - PET clear
12/19/13 - Positive PET
1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4)
1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,292 Likes: 1 | Roger, Glad you got through surgery well and resting at home. Chemo and rads are the typical course of action and you know the drill. Your signature does not indicate HPV status. For some reason, it seems like your cancer is not HPV+, is that right? Thanks don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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