| | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | I am sorry to hear of the loss of John. I remember reading your posts when I was new and scared out of my mind. They were always inspirational. I wish you and your family all 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: Jun 2015 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2015 Posts: 29 | Gloria, I'm so very sorry to hear about John. I, too, drew strength and comfort as a caregiver from your insight, your love for John, and John's courageous life. What remarkable people! 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 2013 Posts: 80 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 80 | Gloria - I am so sorry for John's passing and send my prayers to you and your family. You and John both supported each other and also all of us on this site. You and he, did indeed, make an everlasting contribution in your journey, fight and involvement with head and neck cancers. I have shared, with all of my doctors, his story of never giving up the quest to open his throat to swallow again, which he achieved through perseverance and willingness to be part of the frontier for so many of us. For that, we are all thankful.
The journey has shifted a bit for you - with the loss of John - may you find some comfort, peace and rest.
My sincere sympathy,
Nancy
Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | OP Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | I would like to thank everyone for their kind support. Like John's son said at the very end, "My dad is defiant to the very end." That was the spirit that guided him through those three years.
Keep,well, everyone.
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 2015 Posts: 6 Member | | Member
Joined: Sep 2015 Posts: 6 | Gloria I too am so sorry to hear about your husbands passing. He was a beacon of hope to me as I read your posts. You are such a strong supportive person. As my husband continues his battle I will try to be as strong and supportive as you always seemed to be. Best of luck to you. Nancy G
Last edited by ChristineB; 01-20-2016 07:29 PM. Reason: removed last name
Caregiver to husband
1998 BOT SCC surgery/rads/chemo
1999 lung met, resected
2000 lung met, resected
2000 Cisplatin /5-FU
NED 14 years
10/14 BOT new primary
10-12/14 reirradiation Proton/ carbo/taxol
NED 6 months
6/15 PET/CT suspicious neck node
7/15 massive throat bleed, ICU ,Trach, PEG
9/15 trach removed. carbo/taxol for lymph mets
1/16. CT radionecrosis hyoid bone and surrounding tissue
4/16 total laryngectomy/bilateral neck dissection
NED 5/16
| | | | | 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 | Gloria, I want to add my condolences. I have always appreciated your posts.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Gloria, I am so very sorry to hear about John's passing. You were a knowledgeable and excellent caregiver and a valued member of the OCF family. My deepest sympathy to you and the rest of 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)
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