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Caregiver,

That's one step forward.

Write down your questions in a notebook and pull it out as soon as the doctor comes in and announce that you have x number of questions that you will have to ask. I have found this strategy very useful; they know they can't just brush me off and that I won't go until I have gone through my list of questions.


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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Good luck with surgery on the 22nd! I'm pretty sure if the doctors didn't think there was possibility of a cure, surgery or any other curative type treatment wouldn't be offered.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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My husband is resting comfortably recovering from his surgery. We spoke via Skype last night. He said he ate some applesauce. That's huge: he's speaking and eating.

I'm encouraged to see him looking so well. The results of the operation are tentative pending the full pathology report but the surgeons say they removed two small areas from the right side of his tongue, both with negative peripheral margins. The interior regions that they removed had low density of cancer tissue.

He is having an MRI shortly, and then they are discharging him to the on site hotel today. More follow up tomorrow. Please keep your fingers crossed for the MRI results.

Thanks all for your support and Happy Thanksgiving!


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
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Thanks for the update, it sounds encouraging.


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: Feb 2007
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We are still waiting for the full pathology report and MRI results, but have some concerning news. There are three samples still in pathology, and the operation report talks about both positive and negative margins on one sample.. We think the surgeons stopped cutting at the end because they hit some prearranged boundary that would remain minimally invasive and leave my husband with a functioning tongue. We don't know when we will get the results, or what the options are if one is positive.

On the bright side, he is recovering very well from the surgery. He's eating soft foods and doesn't have much pain. Keep your fingers crossed for us


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
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Dear Caregiver,

While the operation report may raise concerns, you won't get the whole picture until you've got the path report. At that point, the doctors may have a treatment plan to offer. After all, MD Anderson is one of the best facilities to be treated at. The doctors there know what they are doing, put your trust in them.
I am keeping both of you 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: Feb 2007
Posts: 20
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Thanks, Gloria. I am trying to focus on the positive this weekend. He has improved significantly this weekend in both eating and speaking, and he has no pain from the surgery.

We will see what the pathology report says and, if it is not clean, what the next steps are. I'm still holding out hope for a long term remission, if not a cure.

Either way, we are going to take the vacation trip we have planned for the third week in December!


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
Joined: Feb 2007
Posts: 20
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Posts: 20
Good morning

WE finally connected with the surgeon yesterday to review the pathology results. He confirmed that my husband is cancer free after the surgery. They still consider him high risk and want him back for a scan in 3 months.

This is the best news we could have hoped for. He can eat most things and his speech is not much changed. So far, a good outcome for him.

Thank you all again for the support


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
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That's wonderful to hear!


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: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
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Best news possible, congrats all is going well!


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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