| | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Awesome... Happy swimming,
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: Nov 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 37 | So my monthly update has turned into two.......Everything is going great. The soreness on my tongue has dissipated and I have a little white line where the flap meets the teeth. I still have dry mouth every morning and it is gone quickly once I get going. I will have to try a homeade contraption which keeps the jaw closed while sleeping. I have been biking, going to scout camp at Bartle with my boy, Kayaking and laying tile. I now find myself back in the everyday mode of juggling everything I want to do and accomplishing most of it. Every week my condition slightly improves. The two things that have made a significant impact in my progress has been the sonicare toothbrush and being active. I hope everyone is doing well and keeping the beast at bay. Someday there will be a cure for this disease and hopefully we will have made some impact in the research behind the cure. I'm really lucky I found you and thank you for helping me through my journey.
Cheers,
Fish
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | | 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 | Fish, it sounds like everything is going very well, in the right direction for recovery! I still have dry mouth in the morning or when waking up at night. I previously mentioned somewhere, the salivary glands basically shut down when sleeping, even in "Normal" people, so it compounds our already compromised salivary glands. They have Lycra snoring chin straps, which may help, and be used to keep the mouth closed at night to prevent moisture loss through evaporation or just taping the mouth closed, lightly lol. A humidifier you probably already heard about. Here is one example of the many types of chin straps. Just check with your doctor if it's suitable for you. http://sleepapneadisorder.info/2010/06/21/stop-snoring-chin-strap-helps-in-restful-nights-sleep/All the best, and keep up the good work!
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: 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 | Great news, Mr. Fish! I am now actively forcing my dry mouth at night. I make everything shut down so the mucus plugs don't choke me to death and it's working. I retired Mr. Goosucker 5 weeks and 3 days ago. He's mad but I'm glad.
If you are interested in trying a chin strip holler and I can send one to you. I retired it, too. I'm MOCHINE-FREE!
Thank you for ROCKING IT OUT OF THE PARK! It was very inspiring watching you SURVIVE and THRIVE!
Maybe I can grab a cup of Joe with you when I head up there in 2 weeks. I should be around your neck of the woods Sunday and Monday, August 3rd and 4th. Heck, maybe some Q made by YOU...pulled pork style. I can bring the jalape�os!
I will be at BB's Lawnside BBQ Sunday night if you and your family would like to come.
Keep it up! Like a boss, my friend.
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Fish! Reading your post put a big smile on my face. I just love good news!
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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