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"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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My deepest sympathy for the loss of your brother.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Patient Advocate (old timer, 2000 posts)
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I'm sorry for your loss.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

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I am so sorry to hear the news of the loss of your brother. Thank you for communicating this sad news to his family here at OCF.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jun 2007
Posts: 595
"Above & Beyond" Member (500+ posts)
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Joined: Jun 2007
Posts: 595
Sorry for the news, you were/are a great sister so be proud of that and keep the good memories of him close to your heart. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Joined: Apr 2016
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So sorry for your loss, my prayers are with you


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2011
Posts: 596
Dear Ashley,

I am deeply saddened to hear of this terrific loss.

A young man, with an entire life ahead of him taken so early...life is unfair.

He was fortunate to have you as his support. You couldn't have done anything differently. You did the best thing for him by being there during the scariest of times.

May you soon remember the fond memories and how Brandon lived, rather than how he died.

Please be sure to seek help for yourself, as you have been through a very traumatic experience. It's time to take care of you. Please come back for our love and support.

Love in OCF,
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: Jun 2015
Posts: 29
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jun 2015
Posts: 29
Ashley, I'm so very sorry this happened. You were so brave, and what a comfort you must have been to your brother. I'll be thinking of you.







Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind




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"Above & Beyond" Member (500+ posts)
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Posts: 756
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Ashley,

I am so very sorry about Brandon. There isn�t anything I or anyone can say that will take away the sorrow you and your family are going through right now. In time, the hurt will lessen but it will never go away. Focus on the happy memories and know that you did everything possible for Brandon. You were a wonderful sister and caregiver.

May Brandon rest in peace. Hugs and prayers to you and your family


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jan 2011
Posts: 123
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
I am so sorry to hear of the loss of your brother, especially at such a young age. My husband's artery also blew so I know the trauma you experienced. Hang on to the good memories and make sure to give yourself time to grief and seek out help if needed.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
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Joined: Jun 2014
Posts: 86
I want to thank everyone for all of the wonderful and kind words and the amazing support this group has always given me! Thank you Christine and Anna-Marie for the beautiful cards sent to our home.

It has been 6 months without my brother and it's been very tough. It hurts to even get out of bed. Life is not the same without him in it. He was the staple to our family. He fought the fight so hard and suffered so much. I am constantly praying for everyone with cancer and all caregivers because I know how hard it is. I know that I didn't feel my brothers side effects but I did see them all and they effect me until this day. When I swallow my own saliva I think, "how unfair that he didn't have saliva anymore". When I sleep on my side I think how unfair that he couldn't even move his neck. So many things make me think of how unfair this cancer is!

Today is his birthday and he would have been turning 24 years old. I would love for you all to see how wonderful of a person my brother was. We made a video in his memory.

https://m.youtube.com/watch?v=lb1NNczzVY8&feature=youtu.be

Last edited by ak123; 04-26-2016 08:40 PM.

22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
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