| | 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
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