| | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | With deep, deep, deep sadness my brother who was 23 years old passed away on October 29,2015. So much happened to my brother in the end it was crazy. His neck opened up and he had a wound taking up his whole neck. The wound was the size of a watermelon. Two weeks ago we had to do an emergency surgery to put a trach in so he can breathe better and be more "comfortable" on October 29th at 4:55 a.m. My brother bleed out and he bleed out in my arms. His artery bursted. He was gone within minutes. I am so so so sad and very depressed. This stupid disease!
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
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Oh no , what terrible news. I am so saddened to read this post. Brandon fought so hard to beat this . How shite is this disease to take a young man in his prime.
Never forget that you have been a wonderful Caregiver, Advocate and support person to Brandon. I hope that in time , you will remember all the good times. The times he made you laugh and smile. His strength in the face of adversity.
My heart goes out to you and your Family. Take care
Rest in Peace Brandon.
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: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im so very sorry!!!!
There arent words to express how truly sorry I am for your loss. I hope you know that you did everything you could. You had been there for Brandon every step of the way and went above and beyond for him. Brandon was lucky to have you not just as a supportive caregiver but also as his sister.
Rest in peace, Brandon.
((((HUGS))))
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | AK123
I'm so sorry for the loss of your brother. My heart is broken for you and your family.
I lost my mom on April 22,2015 just 6 months ago exactly the same way. I know exactly how you feel . My mom also had an open wound on her neck and her carotid Artery blew . Within minutes my mom was gone. I am having such a hard time dealing with the loss if my mom to this horrific disease .
I still read the forum quit often . For some reason It just seems to bring me closer to my mom . I posted for a year as my mom battled for her life.
If I can be of any help please message me . Just to talk helps .
I'm going to send you a private message with my phone number . I'd like to talk if you don't mind . I'm sure we share some of the same experiences.
You can also go back and read my thread of my past post. It's under Sweetpe.
My name is Heidi
Prayers to your family
Last edited by sweetpe1; 11-03-2015 10:41 AM.
Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015
| | | | | Joined: Dec 2012 Posts: 17 Member | | Member
Joined: Dec 2012 Posts: 17 | AK123,
I am very, very sorry for your loss. Please remember people don't lose their battle against cancer. Cancer never, NEVER wins.
Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit. Author: Unknown
I know it's hard to think of it this way, but Brandon won.
I wish you and your family peace.
Virgo
"I have always depended on the kindness of strangers."
Blanche, Tennessee Williams' "A Streetcar Named Desire"
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | ak123, my sincere condolences on the loss of your beloved brother. May your heart be soothed over time.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh my, Oh my - Ashley! I am so sorry to hear this! I can't find words . . . . the tears are flowing . . . . such a horrific disease - and to take one so young. You have been such a good sister and caregiver to Brandon and in helping your whole family to do all you could for him. Hold each other close and stay close to us here, too. It does help to share and to know that we all hold you close in our hearts and share the hurt you are feeling.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | I'm so sorry to hear the sad news. My condolences to you and your family.
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.
| | | | | Joined: Sep 2014 Posts: 1 Member | | Member
Joined: Sep 2014 Posts: 1 | Bless You and Your Family AK123. Unfortunately i know the pain all to well that your family is enduring right now. I lost my precious Grandmother to Squamous cell Carcinoma in April of this year after a 13 month battle with this terrible disease. We tried everything to rid her body of that disease. The damage the Cancer and treatments did to her artery proved to much as it caused her Carotid to bleed out and she was gone within a minute. I pray people on this forum with the same issues ( open wound) in the neck talk to their Dr about the possibility of this catastrophic possibility happening to them. Our Dr's did not really prepare us for a bleed out. Im sure they hope it wont happen but it is possible. Again Bless You and your family. I hope you find comfort knowing you were an amazing Caregiver to your precious brother. | | | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | How very very sad I am to read your post , Bless you and your family. You are a wonderful sister and care giver to your brother , may he rest in peace . I am crying for you , sending you big understanding hugs . This is a cruel cruel disease xxx
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | 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.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 |
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | 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) | | "Above & Beyond" Member (500+ posts)
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 Posts: 75 Likes: 2 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | 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) | | "Above & Beyond" Member (500+ posts)
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) | | 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
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | 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) | | 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 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
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
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Ashley, what a beautiful tribute to Brandon. This made me smile and this made me cry. What a gorgeous young man. He has left a loving legacy with his Family.
He would be wanting you to smile and keep living, to be enjoying life.
Thinking of you all,
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: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | A beautiful video and tribute. Wishing you and your family the best. Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 246 Likes: 1 | What a beautiful brother and family - the warmth comes through in the video. This disease is bad enough for those of us who have lived most of our lives cancer free, but in the young, it is truly heartbreaking.
Thinking of you,
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Ashely,
Thank you for sharing that video with us. It made me cry and also made me smile seeing what a loving family you have.
I often think of you and Brandon. I know you and your family will never forget your little brother, but in time the painful memories will fade and will be replaced by all the happy and loving times you shared as a 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: Nov 2015 Posts: 18 Member | | Member
Joined: Nov 2015 Posts: 18 | Ak123-
My heart hurts so much for you. This horrible cancer has ruined so many lives and taken those we love. I'm so so saddened for you. The video you posted was amazing. I have to admit though, I couldn't watch the whole thing, it hurts too bad💔. I'm sure you feel so alone, but please know you're in my thoughts and prayers!!!! I feel so guilty- this year has been the worst of my life, but my husband is still fighting to be a survivor for a second time through this. Your brother is gone, and I thought my pain through all of this was bad... I'm so very sorry. I'm so sorry 😥. It's so not fair.
Wife of a stubborn survivor
Scared of the unknown
| | | | | Joined: Nov 2017 Posts: 3 Member | | Member
Joined: Nov 2017 Posts: 3 | ak123, I was so devastated to learn the story about your brother. Such a young beautiful man has gone. He had the whole life ahead of him but suddenly one day everything can change.  Great youtube video. Unfortunately, this type of cancer appears to attack more and more young people. Very sorry for your loss. Although some time has passed, I am sure you are missing him. HUGS | | |
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