| | 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 | This is devastating news, Danielle. I did not expect that to happen. So sad that a young man is, as you said, robbed of his future.
Lots of love
Maureen
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: 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 | Danielle, I am so sorry to read of what happened to Steve. This must have been a terrible shock. So very sad!
Try thinking of the memories of happier, healthier times and let that help to somehow ease your pain. My deepest condolences to you, may Steve rest in peace.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Danielle,
I am so sorry to hear about Steve. It really hurt when something like this hits one of us. My heart is heavy and sad. I wish you only strength and good memories of your time with Steve.
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: 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 | Oh Danielle, how awful. I am deeply saddened to hear the news. My sincere condolences to you. I hope you know how fortunate Steve was to have you by his side in the horrible battle. Please take some time for yourself and you are always part of the family if you want to come help others through this difficult journey.
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: 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 | Hello Danielle. I too am saddened by this news. It is so tragic and unfair.
Know that you have been a wonderful Caregiver and that your love comforted Steve . I know that you will, in time, honour his memory by continuing to live your life. Memories do live on.
Take care, 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: 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 | Danielle, I am saddened by Steve's death. I can imagine your pain from having looked after him, worried about him and then suffer the loss. My deepest sympathy to you and do take care of yourself in your grief.
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: 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 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Danielle, I am so very sorry to hear of Steve's death - it was certainly unexpected. My deepest sympathy to you.
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: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2014 Posts: 87 Likes: 2 | Wow, what horrible news. I had such high hopes for Steve and was always looking forward to your updates, believing that he'd be improving. I'm so sorry for your loss.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
| | | | | Joined: Jan 2015 Posts: 20 Member | | OP Member
Joined: Jan 2015 Posts: 20 | Hi everyone - I wanted to let you know I have read all of your messages of support and care since Steves passing. They mean so much. It was a month last Wednesday that he left us. I have to say I have my ups and downs. The week after he passed I could hardly get out of bed. The few weeks after life started getting better. I have been meeting up with friends here and there and always enjoy their company. However, talking myself into going is a big task. After any interaction I feel drained and exhausted. My Dr said although I am on some mess for depression it is the body's way of dealing with the emotional toll of it all. Life has changed so much in the last month. I moved back into my own house ( we had lived in Steves) and everything of his reverted to his parents. After his passing they have had little contact with me. Even boxing all of my remaining stuff and leaving it outside to be picked up. I have only a small idea why this is, but I think they feel I was not there for Steve enough at the end. The truth is after Steve was declared brain dead, and after everything we had been through I physically and mentally could not sit by his bedside and watch him being kept alive by machines while they waited days for family and friends to come say goodbye. It killed me to see him have seizures while his body was rejecting the life support. I don't think he would have wanted me to see that either. I will forever feel regretful that I was not that strong to be there 24/7, but I did and visited when I could. The truth is I was on my way to the hospital when they removed him and was not even there for him as I passed. I was given no warning they were even doing it that morning. To say the least a lot of hurt has gone down in the last month and I know Steve would be devastated by how I was treated. Shortly after re-diagnosis we had a talk about what would happen if something happened to him. We both predicted this, but I thought after all of what his mother and I went through together that would have changed. Being a caregiver to Steve was my sole job for months and it is a struggle not to have that in my daily life. I miss him more then words can express and waking up everyday without him is a bullet to the chest. I know in time it will get better. The one month anniversary hit me very hard. I did not expect that. I guess that is grief it is unpredictable and non-forgiving. I know I will move on and it is what Steve would have wanted. Thank you again for the support. I will be stopping in from time to time to offer support and any advise to others. Danielle. Below is a link to a few pictures of Steve and I during happier times. I hope it works, but I thought it would be nice for you all to have faces to our names. https://www.facebook.com/photo.php?fbid=10204795106031519&l=4ef61d43bdhttps://www.facebook.com/photo.php?fbid=10205474921266475&l=543566a1c2
Loving Caregiver for my boyfriend
3/14 SCC L tongue, partial glossectomy L tongue, rads L nodes
12/14 Recur Stage III
2/15 Front of tongue glossectomy, ND w/ free flap
4/15 begin 8 wks rads/3x chemo
4/20/15 Steve passed away
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