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#178709 03-26-2014 08:01 AM
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fish Offline OP
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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.
fish #178712 03-26-2014 08:33 AM
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"OCF Canuck"
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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
fish #178720 03-26-2014 12:47 PM
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"Above & Beyond" Member (500+ posts)
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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

fish #178730 03-26-2014 05:24 PM
Joined: Mar 2014
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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



fish #179444 04-18-2014 12:04 PM
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fish Offline OP
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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.
fish #179445 04-18-2014 12:08 PM
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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#Post163644

09/09 - 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!
fish #179447 04-18-2014 01:11 PM
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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






fish #179450 04-18-2014 02:22 PM
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"OCF Down Under, Kiwi"
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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.
fish #179455 04-18-2014 03:09 PM
Joined: Apr 2013
Posts: 319
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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#Post163644

09/09 - 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!
fish #179515 04-21-2014 04:19 AM
Joined: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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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

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