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Great news Charm. I'm happy for you.


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.
walknlite #125576 12-02-2010 12:56 PM
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There's no excuse for the ignorance, of course, but I think that cancer is so scary and unpredictable to many of us, that it might give someone a (false) sense of control if they think that you or someone else might have "caused" their cancer because of lifestyle issues. That means that if *they* don't do those things, they'll never get cancer! It's deluded and misguided, but understandable when you look at it this way. Patient explanations might help, but maybe not if the person's underlying emotion is fear. After Gordon's cancer and treatment, I worry more about him and myself, and actually catch myself thinking "now, if I don't do this or just do that, I won't get cancer". Luckily I know how wrongheaded this is, and would never say it to anyone else. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Charm, that's wonderful! Hope you have a great holiday season with such good news. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Charm,
Definately belongs on the "Don't you love it threat" or even "Friends" as you have so many including me here wink
Great that there is no evidence of cancer and hope it continues to remain that way.
Cheers
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Fantastic news Charm. We are heading towards our 3 month check up for Steve on the 9th. The dread, fear, stress etc etc has started already. I so hate the week before appointments and the day of the appointment. Here's hoping our news is as good as yours. Angelia hoping for great news for yours as well.

Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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Okay, having hijacked a thread I started, I'll expand on Donna's comment. Don't you just hate how your mind conjures up a worst case scenario before those PETscans or MRIs or ENT checkups? and it appears to me that it's even worse for caregivers than patients. The stress that Wendy is feeling over Steve's test, that Suez is feeling over Ron's is even more poignant since they are caregivers. I know my wife actually worries more than I do about the cancer hitting me for a third time.
Yet as all the ones who congratulated me realize oh so well, what a great relief and good feeling it is when those worries don't warp into reality. I guess all the posts here on this thread are variations of don't you just hate it that we or a loved one got oral cancer.
Charm


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
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My appt. It went okay, but he is scheduling another PET scan and took a full blood work up. I have a considerable amount of lower back pain. He did mention that it is possible for this stuff to spread to the bone, but very rare. Well, we all know I am in the category of very rare things happening. smile Will let you al know when I have some mroe answers.


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 2010
Posts: 179
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Angeli,

did he say what it might be if it has not spread to the bone? My thoughts are with you during this time. Its so frustrating when we have no idea what is wrong. I hope you get some answers soon so you can start treating it and have some relief from the discomforts you are experiencing. Keep us posted.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
Joined: Feb 2009
Posts: 88
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Posts: 88
OK I am finally going to post something here. It's been a long time. Don't you just hate it when your COBRA insurance runs out and the only insurance left available to you for purchase is a HIPPA policy and it actually costs more per month then the disability check you are receiving because you can no longer work. God forbid what do we have to do to survive while fighting this ugly disease and all the pieces of the new "Normal".


CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years

2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
Joined: May 2009
Posts: 1,412
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The Drs tell you that you are in a "weird group of people." I know they are joking around, but I am now starting to get tired of hearing it. Today I was told I was perplexing. I just grin an bear it. Guess I should let them know that I do not like them saying that. I was joking aorund with them about it, but now I just wish I would be like all their other cases so they would know what to do.


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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