| | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Charles saw his ENT this past Monday. He confirmed Charles has about a 3 cm tumor in his neck area below his jawbone. He was hoping Charles could be a candidate for robotic surgery but ENTs partners believe the tumor is too close to his skin. So we are scheduled for surgery May 31.
My thought has always been if it's operable choose surgery.
My question is, could targeted radiation have a better outcome? Is it time for more rads and perhaps chemo?
Thank you,
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Does anyone know the best CCC for head and neck robotic surgery? Thanks, 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 | Here is the USNews list of Best Hospitals... USNews Top Hospitals List The link below is the Comprehensive Cancer Center list (CCC)... CCC list Hope the above lists help you to find the best treatment center for your husband. Best wishes!
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Charles had surgery again. Four surgeries in 18 months. This one was really rough. He had a racquetball sized tumor in his left tongue base. His surgeon re-built his tongue using his left pectoral. Surgery was May 30. He still cannot move his tongue. Surgeon is recommending another round of rads. This means all liquid diet and not using his electrolarynx. I'm trying to talk to him about where do we go from here. His listens but doesn't respond. He can text me on his iPad. He still has no symptoms from the tiny stuff in his lungs. I'm just wondering what the next chapter in this story will be.
I am getting a couple of Christine's magic peanut butter chocolate milkshakes into him every day.
Love to all,
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 | Sheryl, Im very sorry to read about Charles's latest surgery. Poor guy has been thru way more than any one person should have to endure. Im glad to hear he is managing to take in a couple of those giant super caloric milk shakes. I loved them!!! Most patients have issues with their sense of chocolate returning, but for some odd reason I could taste the chocolate in the shakes and also I found yoo-hoo soothing on my sore throat. This may have already been discussed with you (and I apologize if its a repeat) but just in case it hasnt... have you looked into the new immunotherapy drug, Optivo? This is something that is supposed to manage lung tumors. Please take a look at this thread, I hope it will be of some help to you... Immunotherapy Trial/Drug Best wishes!!!
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Dear Sheryl, Four surgeries in 18 months is a lot. It's good that Charles is able to get the peanut butter smoothies down. The extra nutrition will help him cope with the treatment better.
Is he finding it hard to talk about his situation? Has he got access to a psychotherapist at the hospital? John saw a psychiatrist after he found out about the metastases. I think it gave him a chance to talk about things that he wasn't sure he wanted to talk to me about. I, too, saw a psychiatrist who was and still is a great help to me.
John never really felt anything from the mets to the lungs. For him it was the chemo, the swallowing problems and the silent aspiration that caused him all kinds of problems. My understanding was, if the airways became affected, then the patient would have difficulty breathing. That was the reason John's MO suggested the two later treatments of radiation -- to zap the swollen lymph nodes that had appeared in his airways.
Keeping you both in my thoughts.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | So sorry Sheryl! Keep him after that high calorie stuff so he has the nutrition needed to keep recovering. Agree with Christine; I would be asking and further exploring the comments made earlier about the lung spots. Prayers and all my best!
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | For some reason Charles' ability to swallow has gone downhill. So next week he will have a PEG tube installed. His med Onc has had testing done on his tissues and is ready to begin targeted treatments, etc. He will have another scan on August 1. His surgeon is recommending rads to the head. But Charles is saying he's had enough surgery and treatments and feels like he's knocking on heavens door. Time will tell.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Charles lost his 15 year battle with head and neck cancer yesterday. http://www.grocefuneralhome.com/obituary?id=1677433
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | O, Sheryl, I'm so sorry to hear that. My condolences to you and your loved ones.
Last edited by gmcraft; 12-08-2016 07:08 PM.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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