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Joined: Aug 2011
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Joined: Aug 2011
Posts: 596
Charm,
I have my first scan in the beginning of January. My team agreed that an MRI with contrast would give the most accurate picture, as well. I panic with MRIs, despite lots of meds. The only way I can get through it is to take meds and the let my husband come in and rub my legs during the scan. There's something calming about knowing that he is there and could "pull me out in a pinch". I know this sounds crazy, but that's me!

Best of luck with your scan. Let's cross the finish line together, holding hands!

Love ya,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
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Posts: 1,301
Wonderful to see you posting and recovering Charm, all be it with the sticky mucous issue.
A huge understatement when you say that you will be home for Christmas instead of hospice smile
Best wishes to both you and Kerri with the January MRI's.
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

Joined: Dec 2010
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"OCF Canuck"
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So glad your back in the swing of things... And that you'll be home for Christmas. That's awesome. Hugs dude!


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: Mar 2011
Posts: 1,024
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You continue to be inspirational Charm.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Posts: 2,671
It is just so awesome to know how you are doing, Charm and Kerri! Best wishes for more good updates. You really are an inspiration to all of us!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Mar 2008
Posts: 3,082
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Kerri

Great to see you posting again. You have had it so much harder than I. I am pleasantly surprised to read that your MRI place accommodates your husband to rub your legs during the scan. My CCC is pretty strict about nobody being in the room with me.

Crossing the finish line as winners together sounds like a great plan to me. We can do this.
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
Joined: Mar 2008
Posts: 3,082
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Wow: "Shining example" - I really appreciate that sentiment, as there are some people who would nod and say: yeah, Charm is just like Jack Nicholson in the Shining. cool although I would counter, right guy, wrong movie: try Easy Rider.
But let's give credit where credit is due: my wife, Bev.
Without her caregiving, love and support, I could not go on.
Today, she just finished changing out my AMT mini one Button (low profile G-tube ) in the comfort of our home with a new one. What a difference between her ministrations and the hospital hassle. My CCC trained her after I kept complaining, that since the beauty of the button is that it's customized for each patient, she can't put the button in too deep or too short unlike the dangling one length fits all tube.
I sometimes worry about scaring the newest members since we all know that fear of recurrence lurks in every cancer patient and caregiver so I keep this thread in the recurrence forum.
When I first joined OCF, I would not even read this forum lest I Jinx myself. Now, it's a real comfort. Plus many others like PaulB, Kelly211, etc are showing that radiation is no longer a one shot deal and there is hope even if the cancer does come back. Thank you all again
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
Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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Joined: Jul 2007
Posts: 939
Charm,

Not much to say but that I continue to marvel at your strength thru all this BS. I know you must have down times but for the most part, all I see is your fighting spirit.

I am so happy that your life partner and caregiver is there for you. Kudos to Bev for hanging in there thru all that has come your way.

I wish you peace tonight dear sir,

Deb



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Oct 2011
Posts: 805
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Posts: 805
As I have said before Charm...You rock and we all love you!!!
Great to see Kerri too.
Merry Christmas Friends,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: May 2009
Posts: 1,412
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Posts: 1,412
Glad to see you doing well. You were always an inspiration to me. Sorry I have not posted much.


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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