| | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 37 | This is a week after update from my last radiation treatment. I did have the mouth sores creeping in and taking away the fun of eating. The worst was over the weekend when it seemed that the pain wouldn't go away. Today I am eating with no pain. The sores are going away and my energy level is getting back to normal. I am getting slightly better by the day and pushing myself more. I attribute my progress to the meticulous daily care and my docs treatment plan. I have three weeks left of tax season and will probably wait until the end to post any updates since I don't have too many side effects. I wish the members who are going through treatment now or getting ready the best. My advice is not to attach yourself to any outcomes (funny I've heard this from someone else) and to use every tool you have in your toolbox to ward off the side effects. You can email me if you have any questions. YOU GOT THIS!
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: 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 | Yeah!!!! so glad you are feeling good!
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Fish:
Fantastic news you are having as few side effects as you are. I too had very few side effects, so it's great to see another getting through treatment relatively easily.
Bart taught me that "don't attach to outcomes" thing too; I sing his praises to everyone as that was the single most important piece of advice anyone gave me; it truly made the journey through treatment tolerable.
Once again, congrats.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Mar 2014 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2014 Posts: 34 | Fish,
I love your attitude! I wish you the best and am glad you are doing well.
Katherine
Last edited by kfisher; 03-26-2014 05:25 PM.
3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer
| | | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 37 | Would you believe the only day of work I missed this tax was because of the flu?!?! I am four weeks out and feeling great! I have dry mouth every single morning and the first cup of coffee has no flavor. My taste buds are slowly appearing and disappearing. My energy level seems a little bit off. The day after tax season I cut two medium sized trees down and corded the wood. I mowed the lawn that day also. I was sore the next day but I'm assuming its because I'm an accountant and not a lumberjack. I am eating healthy and trying to stay away from the sweets. It wouldn't matter anyway....I had a thin mint the other day and could only taste the mint! Any suggestions on the dry mouth? Its only bad in the morning.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Fish,
Thanks for a really encouraging post! I'm delighted that you've done so well.
On the dry mouth issue, get and chew Dentyne Tropical twist gum, it's sweetened with Xylitol and very effective in keeping the mouth wet as long as you chew it. My dentist recommends it, and I can see why.
Good luck, amigo!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Hi Fish,
The salivary glands basically shut down when sleeping, and is worse with those who sleep with their mouths open. A humidifier may help. There are lycra chin straps for snorers to keep the mouth shut, and believe it or not, some I heard taped thier mouth closed, which some spouses may be happy with lol. To help with dry mouth, maybe drink a glass of water before sleeping, have some water handy table side, so you don't have to travel far at night. I also used Biotene dry mouth gel in my mouth, lips, tongue also before sleeping, as well as brushing and rinsing with Biotene dry mouth products in the evening. I also used the Biotene dry mouth spray, if I woke up at night taking a drink of water water, sprayed my mouth, and went back to sleep. Biotene changed the toothpaste formula, but I still stick with it, and is more readily available for me from the pharmacy stores.
I used Xylitol containing mouth lozenges in my water bottle, and it dissolved, and that helped with the mouth dryness, but never did it at night. The same with the dry mouth stick tablets. I never used them when sleeping, and doubt I would.
I hope this helps.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | So encouraging to hear that someone could work and function normally through the treatment. After 9 of them I'm starting to make excuses for myself (I'm too tired to go out etc)although after breakfast I seem to perk up.
What does "Don't attach to outcomes" mean?
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Alpaca,
Your question about outcomes was addressed to fish, so I'll put my reply in PM after I post this.
Warm regards,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Fish - Ditto on the xylitol sweetened gums, I chew Trident which also uses xylitol, but i have to stay away from the cinnamom Trident which is so strong it sets my mouth on fire (and I love cinnamon).
I also bought a humidifier, keep it beside the bed and run it at night while sleeping. It's one of the smaller humidifiers so it runs out of water after about 4 hours, but it seems to help keep the throat a little less dry during the night. And of course I keep a glass of water bedside, that helps also.
I thought my taste was returning really fast, but 12 weeks out of treatment now while I can taste everything, nothing tastes as good as it used too. Even coconut cream pie yesterday (Easter) tasted only mildly good.
You're doing great in your recovery, I don't think my strength has returned anywhere near as fast as yours. I know I wouldn't be up for cording a tree into firewood.
keep fighting
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Feb 2014 Posts: 24 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: Feb 2014 Posts: 24 | Bart can you send me that PM too ... "dont get attached to outcomes"
Its seems like its great advise
Fish ... you seem so positive ... My husband starts Rads in 2 weeks and I would love to keep in contact with you during the process for tips and help
Caregiver to Husband
Hubby Age 43
Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014
T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes
Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site.
37 nodes removed. 3 at level 1 malignant.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 |
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 37 | Just a quick update.....I have my first CT scan and recieved results last Monday...NED! I had my surgery on 12/26/2014 and they took the tumor out with clear margins all around. I started radiation on 2/6 and ended on 3/19. 30 treatments, no chemo. I have started a cancer reoccurence reduction program called LIVING! I am so busy right now I don't know how to squeeze another second into my schedule! For those reading this who are still battling this, stay strong and come to this board often for advice and support. I have gained a great deal of information and encouragement from this site and am truly grateful to the members of this "club". I will keep everyone updated monthly to report on my progress. I have some soreness where the flap was attached but my ENT visit yesterday told me this is normal and it takes longer for the tongue to heal. I am eating well, food tastes come and go. I can talk almost normal (I really don't know if I was normal to begin with). I enjoy non alchoholic beer, especially after doing lawnwork. Physically, I'm good....I got back on my bike and have been riding a litle bit. I am trout fishing this weekend and crappie fishing next weekend. I took my boy out to watch the Royals game last night. Even though we lost we had a great time. Isn't it amazing to wake up and be able to look outside and know that your still in this world!!!
Cheers!
Fish
Last edited by fish; 05-16-2014 09:40 AM.
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: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Congratulations on being NED!
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! Where is this trout and crappie lurking right now? Heading up close in a few days. If I make it that far I will holler at you. Just need to know if I should have the fly rod and ultralight with me!  Ever hit Taneycomo? Unbelievable rainbow and brown. I've caught a ton of crappie at Smithville by the bridges. You hit it out of the park! Great job. Have a great weekend and I'm anxious to hear about "Living".
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Fantastic and inspiring report! Glad the new normal is nothing you feel any loss over as the new one seems pretty darn good!
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Great report and a great attitude, you will do much to help the new guys who come along in your footsteps.
I'm interested in hearing about the Living program also.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 |
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats on the great check up! I love seeing such positive improvements!
ChristineSCC 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  | | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Continued Great News, Fish! I'm very glad to read this, Keep on Truckin', brother!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | 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 | 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: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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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