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Joined: Sep 2009
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I saw previews, looks too scary for me! I'm still trying to overcome my fear of men in white lab coats! FYI a woman may (@times) have a fork tongue, but for the most part has a heart of gold!!! Enjoying a sunny, chilly day in upstate NY !


BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"

*** Admin update --- Dianne has passed away on August 25, 2015 ***
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Posts: 388
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David, we ladies know where you live...........
(muhahahahaaaa)


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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Posts: 388
Pandora, I can't believe someone would say that ("thank goodness it's not breast cancer") - they have no idea how very damaging this cancer is, or how it can affect the very "face" you put to the world. Hope you educated this person. Thank goodness for Brian and Gary (site originators) and now David (who earned his "red letters") and others who are setting the world straight about oral cancer. Thanks to each of you!


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Joined: Feb 2007
Posts: 790
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So rude! Bother are terrible cancers but oral cancer effects you speech taste social life- just everyday life getting by- talking on the phone-- simple thing...Boobs smoobs... I'd give both for my tongue back any day of the week!



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

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Posts: 790
The last time I ssaw my oncologist for a checkup he had two residents in there and one of them said to me-- oh you have an accent!

I was like-- are you kidding me? You have my medical file in your hands- you know what I went through-- its not an accent its a speech impediment!

unbelievable. I think people just don't know what to say and they think they get nervous and just blurt out something they think is helpful or comforting...when often it isn't


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Joined: Aug 2008
Posts: 238
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Posts: 238
David....extraterrestrial????!!!! BYW, congrats on becoming a monitor. You've earned it!

Misskate, I've been watching my Mom go through the terrible treatments, the loss of swallowing, the PEG, they've done everything they can with a prosthesis so now she has a hard time being understood and writes a lot of things down on dry erase boards. I asked her the other day what she wanted for Christmas and it was heartbreaking to hear her say "a drink of water". Just to be able to sit in a room and socialize with others, even with a glass of water in hand - I didn't realize all the different impacts there were. On Nov. 10 she has another swallow test scheduled. I'm not trying to get my hopes up but I am saying lots of prayers and asking others to do the same. I would LOVE to be able to give my mom a glass of water so, so badly.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

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Posts: 1,412
Okay, so I just heard a good one. I was in one of my man special ed meetings. Had a grandparent tell the story of her daughter and her surprising death, she had an ear infection that turned into meningitis, tragic I know. This grandmother, knowing i had cancer and why we had to get the meeting done so quickly, said "We wish she would have had cancer so we could spend more time with her." I just about lost it in that meeting.


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
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
You better hope she doesn't start hanging around you more!


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.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
I am so glad this particular thread has shown staying power in this forum. I think we all need to share the frustrations and yes the humor in our new normal. Keep up the good work people and let's continue to share the slings and arrows of outrageous fortune that we endure daily.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
I hate it when someone tries to tell me that there are other alternatives to chemo. They are talking about unproven facts. I posted about this in my blog.


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
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