| 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 | 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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | Joined: Feb 2007 Posts: 20 Member | OP Member Joined: Feb 2007 Posts: 20 | 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
| | | | 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 | 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 Posts: 20 Member | OP Member Joined: Feb 2007 Posts: 20 | 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
| | | | 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 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 Member | OP Member Joined: Feb 2007 Posts: 20 | 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 Member | OP Member Joined: Feb 2007 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
| | | | 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 | 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: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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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