| | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | That sucks!!! 
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: 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 | Yes, it sucks. However , you now need to carry on with the treatment plan that Charles had already agreed to do. Think of this as just a blip. I hope the surgery is rescheduled ASAP.
Thinking of you both.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | We have a family reunion in Mid October. The surgeon has agreed to schedule surgery for October 23. Now that he has had a good look inside Charles' throat he thinks a laryngectomy is needed instead of a supraglottic laryngectomy. Bummer. Charles is handling the re-scheduling of the surgery much better than I am. I'll start taking videos.
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | 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 | There is much information to be found at www.webwhispers.orgRe Laryngectomees . I found that site very useful to prepare me for Kris' s laryngectomy. To be honest, it has all been ok. The Laryngectomees I have had contact with talk well. Most have a TEP prothesis put in for their speech. Kris is a different kettle of fish as he also had a total Glossectomy. Charles will be fine. Enjoy the reunion. 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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Thank you for the link! And your encouragement. It really has meant a lot to me over the past couple of months. What does the abbreviation NED mean? Sheryl
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | 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 | NED means No Evidence of Disease.
We all love a checkup with NED.
Come here and ask questions any time. We are all here for you.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | I will have a lot of questions as we go. Back to fattening up our patient to get ready for another round. Can't believe how well he is taking this one now. He says it's just a little blip on the radar! Blessings, s
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Charles had surgery 11/11, laryngectomy, partial glossectomy, rebuilt tongue with pectoral muscle, permanent stoma, selective neck dissection. ICU for 1 day, still recuperating in the hospital. Don't have pathology yet. Feeding through nose tube (Osmolite 1.5). He is handling the nose tube really well. Complains that his pectoral area is very sore. Surprisingly little mucous. Once his tongue gets back to a more normal size he'll be a lot better. He does have a unique smell coming from his stoma. Is this something that will go away. Blessings, Sheryl
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | 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 | A pec flap can take a long time to heal. Once it heals the smell should go away. If it looks red or like there is any sign of infection get it checked out.
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: 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 | Hi Sheryl, sounds like Charles is doing well.
I'm not sure about the smell.,I don't remember Kris having a smell coming from the Stoma. I presume that he is nebulising saline via the Stoma. This helps to keep the mucous liquid and more easily coughed out. Kris still nebulises every morning.
Did you manage to sort out a means of communication for Charles?
Hope you have him home soon.
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!
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