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Joined: Oct 2012
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John passed yesterday morning. He was referred to the palliative care team after the MO found new growths in his lungs and swollen nodes in his airway in early November. He had a fall at home last Thursday and fractured two ribs. The next day, pneumonia returned. The pneumonia was a problem he had been fighting off-and-on since early July. He was admitted to hospital on Saturday and his condition quickly deteriorated. He breathed his last early yesterday morning with me and his son by his side. It was quiet, peaceful and there was no pain.

I am very proud that he fought a long, hard but valiant battle and for his contribution to the research and treatment of head and neck cancer by his participation in two clinical trials and a groundbreaking procedure for opening up an esophagus closed by strictures resulting from radiation. No one could have asked him to fight harder.

The nurses at the palliative care unit were exceptional. They took me through step by step the last two days of John's life so that I knew what to expect. They are models of knowledge and compassion.

I have learned so much from my participation in this group. One of my first posts was "What do I need to have ready at home in preparation for treatment?" I have come a long way from those days, thanks to all who have posted and responded. Sometimes even what may seem like a minor detail ended up making a huge difference for me as a caregiver. There is indeed power in knowledge.

I wish all of you who are reading this well. You are my second family and whatever one feels for one's family, I feel for you.


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.
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My condolences on your loss he was a true Warrior1!! 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 !!!
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Oh Gloria. I am so sorry and saddened to read this. Both you and John have been inspirational to me the last few years. John lead the way in Immunotherapy trials for us all and I always looked out for your posts and updates.
You yourself have been a role model . An amazingly positive Caregiver and a wonderful advocate for John.
Whenever I have faced challenges, I remember your quote and I have adjusted my sails.
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!
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I'm also very saddened to hear this, Gloria. You and John were both an inspiration, and supportive to many here in many ways, including myself.


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
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Gloria,

I am sorry to hear the news of the loss of another warrior in this terrible battle. He did contribute much to advance the path to discover cures for this disease.

We are family here and hope you stay close and near to us. This place is forever home to you.

Don


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
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Posts: 214
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I am sad to hear of John's passing. But I am glad to hear he passed comfortable with you and his son by his side. Thanks for your sharing and caring.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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Gloria, I am so very sorry!!! You have been an excellent caregiver for your husband, John. May he rest in peace, free from pain and sickness. I hope that in time, you can look back and remember happier, healthier times, finding comfort in those memories.

((((HUGS))))


Christine
SCC 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 smile
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Posts: 236
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Gloria,

I hated reading this sad news. I have your quote memorized and have referred to it often for perspective and strength. You and John have been an amazing team.

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: Dec 2014
Posts: 55
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Posts: 55
I am saddened to hear about this. My prayers are with you and your family. Thank you and John for all the help for the cancer community and for us on the forum who learn from the posts.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Mar 2014
Posts: 110
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Posts: 110
Gloria,

I am truly so very sorry for your loss and I am literally at a loss for words. My deepest condolences.

This news hit me hard and I am deeply sorry for your loss. You and John have been so inspirational with your indefatigueable spirit and unquenchable enthusiasm. I cannot even begin to tell you the number of times I have thought of you guys fighting and winning when I have felt down and felt sorry for myself.

I have said repeatedly that you guys are an inspiration to everyone here, and I think I speak for everyone when I say we all thank you for sharing your story with such earnestness and we are all mourning with you.

I wish I had better words of comfort to offer - you are in our thoughts.

The Hellion





SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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