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Joined: Dec 2013
Posts: 78
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Hi everyone.
I like to know more from loved and respectable members here who have opted to go for free flap option followed after tongue resection(either by personal choice or by doctor's recommendation).
Don't want much of details, but like to get overall outlook after opting this choice in terms of;
1. Age
2. Year Free Flap was done
3. Your overall experience (positive/negative), Please use one of the choice only.
4. Three to four Positive things (usefulness)
5. Three to four negative things (Side effects)
6. Regret your decision to opt for free flap option?

I really will appreciate your little time if you can manage to answer these six questions in shortest way. Here is an example

1. 40
2. 2013
3. Positive
4. Functional, Helps in swallow, fills gap
5. No taste, hair on surface, No saliva
6. No

Thank you so much to all readers for your kind co-operation. And yes, anything happens happens for reason. Reason to start this thread is, I am in a box now, and need some real time feedback from members with Free Flap. I didn't see much about free flap on this forum and decided to toss a new topic for readers over a period of time.

Thanks once again...


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Mar 2011
Posts: 1,024
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Posts: 1,024
1. 60
2. 2012
3. Positive
4. Fills gap. Aesthetic .
5. Non functional. Did have hairs, but no longer.
6. No


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: Sep 2012
Posts: 381
"OCF Canuck"
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"OCF Canuck"
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Joined: Sep 2012
Posts: 381
1. 39
2. 2012
3. Positive
4. Aesthetic, keeps the old tongue in the right place, has adapted to work with the old tongue for speech and swallowing, starting to get feeling.
5. Partly functional, no hair (ew), no saliva but that would have been the case regardless.
6. Absolutely no regrets


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Posts: 78
Everyone,

I am glad to add this topic for readers. Thanks all for responses. Hoping more responses being added here over a period of time. To me this is a trend analysis topic that helps others to make aware, educate and helps to make decision on this opportunity.

Thanks


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Tina,

Thank for your response. I sent you over PM as you requested, Please let me know you had a luck to find me on FB.
You can send me PM also if you wish.

Thanks


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Thank you so much for your time and active participation on this topic. Hope you must have joyful year and pink health.

Have fun..


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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1. 46
2. 2011 (February 4)
3. Positive
4. Looks real, prevents crap from getting underneath, aids in speech - I too can swallow with no problem and I can feel as well with it.
5. It's still a little big for the space so I have to make sure I don't bite it (chew only on my good side) dr. Will revise when I am ready. Other side effects only if I've talked a lot all day- but I get a small lisp later in the evening sometimes (not often though) my real tongue gets tired as it has to work for both sides.
6. No regrets at all. 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
Joined: Nov 2013
Posts: 37
Contributing Member (25+ posts)
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Joined: Nov 2013
Posts: 37
1. 43
2. 12/26/13
3. Positive
4. Now that the swelling is down I was able to eat pizza last night and steak tonight. I still sound like I have something in my mouth when I talk but every day is getting clearer.
5. No feeling yet or maybe never where the flap is. I also have to scrape under the tongue to make sure food is not lodged in between...I've been using the water swishing method and seems to be working well for the most part.

6. NO REGRETS! AMAZING HOW THEY ARE ABLE TO DO THIS!


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Fish... the sensation will come back slowly - hopefully - nerves take a long time to regenerate, and don't always recover fully but it does improve over time. 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
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Joined: Dec 2013
Posts: 78
I am glad to introduce this topic. Monday, 1/20/14 I am set for 8-10 hour surgery. Will access laptop & iPad after a week. So will update all my dear fellow members here on Jan28 afterwards.

Thank you so much all of you (By Heart) for your time and support to date.


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Joined: Jan 2009
Posts: 1,844
Best of luck on your upcoming surgery Ankur


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Aug 2007
Posts: 1,301
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1. 55 at he the time of surgery.
2. 2006
3. Mostly positive.
4. Can eat almost anything now.
5. It took many year and surgeries to get the flap right. Even now it feels a little full but I mostly can ignore it.
6. I was never really offered any other choice and put my life in the hands of the team.

Best of luck with your surgery.


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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