| | Joined: Oct 2014 Posts: 7 Member | OP  Member
Joined: Oct 2014 Posts: 7 | Hey Everyone!
I'm Stacey! I'm still recovering from radiation and surgery side effects. No taste buds, chronic dry mouth and getting PT for left shoulder. I'm currently NED!
I'm glad to be alive and thankful I got that 2nd opinion. I think my story would be much different if I hadn't. I have quit asking "Why" and have accepted that this is the path I have been given.
I'm so glad I found this forum!
Stacey
SCC Stage 3 Left Lateral Tongue and lymph nodes December 2013 -HPV (no risk factors)
37 years old at diagnosis
12/2013 Partial Tongue Gloss by local ENT(she said clear margins)
01/2014 2nd Partial Tongue Gloss and left Neck dissection with more disease found by doc at MD A
04/2014 finished 30 Rad Txs
04/2014 Hospitalized for radiation side effect. PICC line for fluids and TPN feedings
06/2014 PICC Line removed
09/2014 NED
| | | | | Joined: Aug 2014 Posts: 18 Member | | Member
Joined: Aug 2014 Posts: 18 | Welcome! I am glad you got that 2nd opinion too! I felt a little weird telling my ENT that I wanted to get a 2nd opinion, but he said that he would if he was in my shoes, so off I went. My 2nd opinion doc at Seattle Cancer Care Alliance concurred with my initial diagnosis, so for now we're just in watch and wait mode, but I'm hopeful in that my DX was very small stage 1, that I'm done with this. I wouldn't be sleeping though, if I hadn't gotten it. Sounds like you are doing well!
This whole experience has pushed me into hyper vigilant mode though, when it comes to health. I finally went through with the dreaded colonoscopy (two years later than recommended) last week - clean as a whistle. And I remembered a cyst in my leg and had it checked out by my doc - also no issue. I'm sort of afraid of turning into a hypochondriac, but I guess it's better than the alternative!
Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | HI there. welcome and congrats on getting through it. Things will improve over time. I still see improvements after 3 years!!!  most notably the last few months... YEAH!!! Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF. Better late than never! There a lot you can both receive and give here as there are those who arrive early and those who hang in here for the long haul. Glad to have you here, don
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Stacey, welcome. You appear to be getting top notch care and I'm so glad to read about the NED. Your positive attitude is clear in your enthusiastic post - not necessarily an easy thing to keep up!
Please keep contributing and asking questions. We're glad that you're part of our family.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2014 Posts: 23 Member | | Member
Joined: Oct 2014 Posts: 23 | Welcome and congratulations! I've looked throughout the abbreviation list and I still can't figure out what NED means?? Maybe we are too new, but please inform- it appears to be something positve.
Maura
Working caregiver of husband Don ,56yrs, non smoker, casual drinker
6/14 DX squamous cell carcinoma on base of tongue, HPV positive
8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node
8/30 emergency surgery to cauterize bleeders in throat
10/1 Began 1st of 30 tomotherapy
11/14 end of radiation
| | | | | Joined: Aug 2014 Posts: 18 Member | | Member
Joined: Aug 2014 Posts: 18 | NED stands for no evidence of disease. Yes, it's good.
Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | NED should be in the glossary post, but I think the thread is locked. Can one of the mods have a look at that please?
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=MAK]...I still can't figure out what NED means?? ...- it appears to be something positve. [/quote]
MAK, they are the most wonderful letters to ever see or hear! I can't wait till you get to see that for yourself.
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 2014 Posts: 23 Member | | Member
Joined: Oct 2014 Posts: 23 | Thank you! I look forward to putting NED on my signature!!
Maura
Working caregiver of husband Don ,56yrs, non smoker, casual drinker
6/14 DX squamous cell carcinoma on base of tongue, HPV positive
8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node
8/30 emergency surgery to cauterize bleeders in throat
10/1 Began 1st of 30 tomotherapy
11/14 end of radiation
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