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Joined: Sep 2014
Posts: 27
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Sep 2014
Posts: 27
Well, being what it is... I feel relief today after a 2 hour meeting with RO. He was awesome and answered every question I had before I even asked, 2 pages of questions in my trusty note book. He is extremely optimistic about curing this nasty thing which was a good to hear. I think I will be able to sleep tonight, finally. We have a bumpy road ahead. but thanks to all of you, I knew what to ask. Keep on plugging away and I believe next year at this time it will be a memory we can forget. Thanks to all of you!


Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I'm so glad you got all of your concerns addressed. So many of us just stumbled along, not sure of what to ask. I hope for the best possible outcome!


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: May 2013
Posts: 185
Likes: 3
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2013
Posts: 185
Likes: 3
Sandy - appears you have found momentary peace with the circumstances. I have passed the one year mark and credit this group as having a major impact in my journey. Keep using them as they have already walked were you will go. There will be challenges along the way and some frustrations along the way but you are not alone. Keep us posted on progress, questions etc. Be strong and informed.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
Joined: Mar 2014
Posts: 286
"OCF Down Under"
Gold Member (200+ posts)
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"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
Well done Sandy. Its a bumpy road ahead for sure but between you and this RO your friend is in great hands.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Sep 2014
Posts: 27
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2014
Posts: 27
I feel like I have my own special support team here. Thanks so much folks. I lost it again for a few seconds today. Just dreading the next steps. I hope you all have a fantastic weekend.


Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Glad things are going well for you. Having knowledge is power and comfort. I really believe the doctors appreciate those who put the effort to get educated and ask all those good questions. Subconsciously, as any human, you may care just a bit more if you know the other person is right there with you.

good luck


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: Sep 2014
Posts: 27
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Sep 2014
Posts: 27
Thanks Don


Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

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