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EzJim #96192 05-27-2009 06:10 PM
Joined: May 2009
Posts: 1,412
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smile I just thank God for every minute I get to spend with my children. I go back to the Dr. July 1, and schedule the PET scan then. I guess I will not rest easy until after the PET scan.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #96249 05-28-2009 04:58 PM
Joined: Dec 2008
Posts: 1,004
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Posts: 1,004
Alright Chrsitine!! I'm ready for our roadtrip:) We can be some tough cookies!!!

Angelia, I don't know why people keep saying things to you. Do they realize what you have been through?!?!?!?! What do they expect? Try to take it easy until the PET. That is too far away to not rest.

We are always in your corner and will provide you a place to vent.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #96369 05-30-2009 09:44 AM
Joined: May 2009
Posts: 1,412
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Thanks guys. I am doing rather well now. I can pretty much eat anything I want, but when I do I get a lot of swelling underneath my chin. I go to my PCP Wednesday, I will ask her about it. If she thinks I need to go back to the ENT I will.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #96391 05-31-2009 05:17 AM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
Angelia, I just wish I could eat any one thing that doesn't need made into a mash or liquified. It's been a year and a half for solid foods with no end in site. I think I could take on a gorilla for 1 good meal that I could eat and taste. I feel for you and pray you are alright, but thank the lord I am here to even complain. LOL Wish you all the luck there is.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #96421 05-31-2009 09:43 PM
Joined: May 2009
Posts: 1,412
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Joined: May 2009
Posts: 1,412
I know that my case could be worse. I pray for each and everyone of you on here. You all have been there for me since I made my first post. If i had not have found this place, I do not know what i would have done. I want to return the favor. Life does throw curve balls sometimes. I know that we are all strong and can hit the curve balls out of the park. Thanks for all your encouragement, JIm. You are amazing.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #96472 06-01-2009 06:42 PM
Joined: Dec 2008
Posts: 1,004
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Joined: Dec 2008
Posts: 1,004
Hi Angelina,

I'm happy you found this site too and that we were able to help you. It has helped me a lot too. You say you know you could be worse and that is a good way to look at it. But...don't downplay what you have been through. We are all fighters here with this crappy disease:)

xoxo


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #96581 06-02-2009 08:14 PM
Joined: Aug 2008
Posts: 531
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 531
Hey I have been gone a while someone mention "ROAD TRIP" Count me in too ....Please...when should week book the BUS?!


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
darkeyedlady0 #96618 06-03-2009 07:34 AM
Joined: May 2009
Posts: 1,412
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Posts: 1,412
You guys are all so awesome. I actually got a chance to talk with a friend of mine yesterday about this whole ordeal. She said she would help you all kick some you know what. She actually said that the next time it happens to ask them how they would talk with part of their tongue whacked off. Maybe even to ask thm if they are an adult. smile Even at dinner the other day, we were eating with friends, and this "friend" began to make fun of my speech, saying "what I don't understand you" and making garbled speech sounds. Well, let me tell you she is no longer a friend of mine. She actually new about the whole ordeal as my husband is her boss.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #96629 06-03-2009 11:50 AM
Joined: Jan 2009
Posts: 216
Gold Member (200+ posts)
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Joined: Jan 2009
Posts: 216
please tell me you poured something over this "friends" head and told this "friend" "oops sorry, my coordination must have been effected too" wink what a jerk! count me in on the road trip!!!


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
peace4uall #96656 06-03-2009 07:33 PM
Joined: Dec 2007
Posts: 46
"OCF Down Under"
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Joined: Dec 2007
Posts: 46
Hi I'm Lyn. I still speak with a slight lisp two years later...whats worse..Im a singer. Funnily enough, the only thing I CANT do when I sing is roll my R's...so no singing in French or Italian! So yes, it does get better. As far as those who make remarks...either poke your 'now cancer free' tongue out at them, and tell them to get a life OR to watch out, as you initially injured your tongue BITING a STUDENT who gave you back talk! heheh Only you need to know the truth. Life vs Death vs Stoopid insensitive remarks from morons? I choose Life (with attitude!) heh heh! Ignore the morons!


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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