| | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Love You Brother. You are always learning and teaching. And yes today needs to be "Large!" enjoy it.....
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: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | just catching up and so very disheartening to hear the news but thank you for sharing here. I wish there is something more to help other than some gentle words. I can say you have been and remain in my thoughts every day. Take care Ed.
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 | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I missed all this love! I owe y'all an update. 7 months in and except for 1 trauma incident with a little child running by me and getting caught on the tube and 2 little stoma sores, it's been going fine. I am having a little motivational deficiency with my gym activities but it's going good about once a week. I climbed back to 18 mph a couple weeks ago, even. I have also consulted with a voice specialist ENT and he thinks some filler injections on the left vocal cord would bring it back to center which will stop the constant aspirating and he is pretty confident I will regain all of my voice back. Plus, he thinks with all the weakened and atrophied throat muscles, he can stretch the upper esophageal sphincter and allow me to increase comfort eating. I went through 14 weeks of swalow therapy from an SLP that was part of the boot camp program from MDA.
I took a trip to Colorado and ended up in cardiac ICU with pulmonary edema, sodium depletion and aspiration pneumonia. We were going camping and at 8,000 ft all hell broke loose. My O2 sat tanked and dropped all the wat to 52% but we made it to the ER just as the fever shot up.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Uptown,
Thanks for the update. Good to,know that there is a possibility that some of the issues can be resolved. KEep well, friend.
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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