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zengalib #178251 03-12-2014 05:36 PM
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"OCF Canuck"
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I have not had some of the challenges you MIGHT be facing, but I can speak (pun intended) to not being able to speak well. I have about 1/8th of my tongue and my speech is somewhere between that of a hearing impaired person and someone who has had a stroke. In spite of this, I continue to try to speak regularly. I think you will find that there are some who will understand you fairly easily and those who cannot. I very much appreciate the extra efforts others make to understand. You get through. When your doctors are telling you all of the side effects, they are required to tell you about them all, regardless of which will probably apply to you.

Good luck, and hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
zengalib #178252 03-12-2014 05:42 PM
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"OCF Canuck"
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Hun Do whatever you can to get through this. Do not let people tell you what you can or cannot do, do not let them limit you that way. Take what they say to be the worst possible scenario then move past that to achieve the maximum quality of life you can. Dr.s give you "Scary" (they told my father in law 6 months likely with the peg - after he had his esophagus removed and replaced with his stomach. His surgery was a month yesterday he's taking everything by mouth, only flushing his peg. If he maintains his weight it's coming out next week.) they always give you worst case scenarios do what you can to surpass their expectations - not for them - for you! HUGS.


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
zengalib #178270 03-13-2014 07:52 AM
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Dear Zengalib, if your energy level allows it, there is no reason why you should wait to go back to your belling group.. My husband is a potter and he goes and works in his studio (it is really just our garage) everyday unless he has a medical appointment. He told me that it "fed his soul." Maybe belling can do the same for you. You also get to see your friends there.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
zengalib #178280 03-13-2014 04:46 PM
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The only reason I haven't gone back to bell choir is that they are working on music for Easter, and hopefully I will be in the hospital or recovering from surgery by then. I hope to rejoin them in the fall, though. I have been going to my Friday morning coffee group, and my Kiwanis meetings. So, I haven't dropped out of everything.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178287 03-13-2014 05:16 PM
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"OCF Canuck"
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Hugs again... smile


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
zengalib #178293 03-13-2014 06:38 PM
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That's good. It is important to keep busy and to keep those social contacts up.
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!
zengalib #178300 03-13-2014 09:26 PM
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I am so deeply sorry that you have had to deal with this monster popping up again. Never in my life would I think that I would find so many good, caring friends in the face of adversity and tragedy.

You are brave and I applaud you for keeping up with your social routine as you face your upcoming surgery. I fell apart both times when I was diagnosed and could not function at all. We all have our own way of dealing with things.

I hope that you have a great support system in place. Congratulations on the immanent arrival of your sweet granddaughter. Just think of how it will feel to hold her in your arms for the first time. That warm, tiny bundle of joy; a new life to live. Think of the wonderful smell of her tiny little head; one of the sweetest smells in the world.

Hang on to anything that keeps you going and makes you want to fight for your life. I think it's great that you already have plans to return to your bell choir after you recover some.

It's so incredibly hard, in so many ways. Even though I am a two-time survivor, I feel like I got off lucky compared to many on these forums.

I wish you all the luck one could have in this world as you endure this surgery and recovery. I wish I could say something more profound or comforting. I wish I could wave a magic wand and make everything go away. I wish that for all of us.

xoxo,
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!
zengalib #178305 03-14-2014 06:25 AM
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I am so fortunate that I have such a great support group. Not only my family and friends, but my church family and my community. I was the town librarian until I retired in 2011, and the community rallied around me 5 years ago at my first diagnosis. It was overwhelming. When I retired, there was an open house for me at the library, and even my congresswoman came. I live in a wonderful town with truly amazing people.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178320 03-15-2014 12:01 AM
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Sorry to read that you are having a recurrence.
I have been keeping up to date both here and on FB!
It is great that you do have a wonderful support group around you.
Sending good vibes and positive thoughts as you go through surgery and recovery!
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

zengalib #178428 03-18-2014 04:51 PM
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Got a date for surgery. April 9. Not sure if it will be a total or partial laryngectomy or a total or partial glossectomy, but there will be some skin grafting, a feeding tube, and a trach. It will be a long haul, but doable.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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