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#195197 - 10/08/17 01:21 PM Checking in at 14 years  
Joined: Dec 2003
Posts: 2,599
Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,599
Dallas
I ended treatment 14 years ago today. I have no updates other than things have gotten a bit more difficult. I hope everyone is doing as well as possible. Make it a great day!


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Diagnosis Post Radiation Lower Motor Neuron Syndrome 3/08.
Diagnosis Cervical Spinal Stenosis 01/11
Diagnosis Cervical Myelitis 09/12
Diagnosis Thoracic Paraplegia 10/12
Diagnosis Dysautonomia 11/12
Hospice care 09/12, off 01/13.
Diagnosis PLS 02/13
Diagnosis COPD 01/14
Diagnosis Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
Living life LARGE with no quit in this guy!
#195199 - 10/08/17 02:15 PM Re: Checking in at 14 years [Re: Uptown]  
Joined: Oct 2012
Posts: 864
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 864
Toronto, Canada
Hi Uptown,

It’s been a while and it’s great to hear from you. This weekend is Canadian Thanksgiving, can I take the opportunity to wish you Happy Thanksgiving?


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.
#195205 - 10/08/17 08:52 PM Re: Checking in at 14 years [Re: Uptown]  
Joined: Jun 2007
Posts: 9,716
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,716
PA
Congrats Ed!!! You certainly have had your ups and downs over a very long span. Wishing you many many more happy, healthy years ahead smile


Christine
SCC 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 smile
#195209 - 10/09/17 06:21 PM Re: Checking in at 14 years [Re: Uptown]  
Joined: Jul 2012
Posts: 2,994
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,994
NYC
Congratulations on 14 years, Ed!


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#195220 - 10/11/17 06:29 PM Re: Checking in at 14 years [Re: Uptown]  
Joined: Dec 2003
Posts: 2,599
Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,599
Dallas
Thank you!


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Diagnosis Post Radiation Lower Motor Neuron Syndrome 3/08.
Diagnosis Cervical Spinal Stenosis 01/11
Diagnosis Cervical Myelitis 09/12
Diagnosis Thoracic Paraplegia 10/12
Diagnosis Dysautonomia 11/12
Hospice care 09/12, off 01/13.
Diagnosis PLS 02/13
Diagnosis COPD 01/14
Diagnosis Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
Living life LARGE with no quit in this guy!

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