| | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Hi, Jay,
I just read this entire thread and I think you have been an amazing partner to Jen in seeking so many opinions - and in two countries. I guess there is always "something else" that some doctor somewhere might do but the medical consensus you've described has led you to decide to enjoy your life with Jen and Hunter without further treatment at this time. That is a decision you reached based on an impressive amount of medical advice and I hope you are at peace as a caregiver.
Best wishes - Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | We met our final (5th opinion!) oncologist last week and also did a PET/CT scan again to see where the tumor is at. Different from the previous 4 doc's, this one in particular was very keen to get Jen started on the Chemotherapy which we have our reservations on. Her recommended treatment was Erbitux + 5-fu + Cisplatin over 6 cycles as a means of trying to keep the cancer at bay. From the literature, it is a brutal regime with slightly over a 35% response rate with a PFS of only 4 months even if it works. I know that everyone responds differently and statistics are only statistics but please note that the best case scenario is not a cure but a means of extending life at the expensive of quality of life - something we still have at the moment with Jen's symptoms very minimal. Hence, although some of you may be baffled with us playing the wait and see game - the view of using chemo & radiation as a means of palliative care has been shared by 4 doctors spanning across 4 very well known cancer hospitals in Australia, Korea & in the UK. Final decision on how we will move forward will depend on the results of this scan which we receive on the 12th of September and if there is no growth in the tumour or spread to other parts of the body, it will be most likely we will wait and see what happens and will continue on enjoying our days with Hunter & the family. In the meantime, we have our little boys 1 year birthday tomorrow which we plan to make the most of with our friends & family. I would love to say that we as a family will be able to enjoy at least another 5 of these together but it pains me to think that the odds of this happening are stacked against us.. All the more to enjoy and make sure we make the most of this one! Will keep you posted on the final plan once we have our next appointment in a few weeks time. Jay, Jen & Hunter
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | 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 | Dear Jay,
Happy birthday to Hunter and a special hug and kiss to Jen and you. Have a blast!
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Jay, my heart goes out to you and your family. I am sitting here with tears in my eyes to think of the choices confronting you. The fight against cancer can become so consuming that we can forget it's really a journey to live the richest life we can.
<<<HUGS>>>>
Mama
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Thanks so much for checking in and keeping us posted here. You have done as much as is humanly possible to help define the very best path for your family. Wishing you the very best in enjoying life to its fullest.
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 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Jay,
I want to wave a magic wand and make this tumor go away. So sorry to hear this obstacle your family faces. Prayers to you and your family. I am still hopeful for you and Jen and Hunter.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Jay, know that we all support whatever choices you make as a family.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | It was good to hear from you, Jay - and to know that for now, Jen's symptoms are minimal. I hope that Hunter's birthday is a very special one for all three of you and I'm still praying that there will be better days and better news ahead.
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: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Hi all, It has been a while since my last update but I thought it might be best to keep the board updated as I know there are quite a few people who have been wondering how we were doing. Unfortunately, things have taken a turn for the worse with the cancer now appearing in multiple spots in Jen's lungs and a lymph node on the opposite side of Jen's neck. Symptoms have started to appear due to the increase in the main lung tumor and it looks like we have now run out of time with our 'wait and see' approach with the cancer now moving aggressively. We have managed to keep off chemotherapy till now and we both still feel that this was the right option as she has been able to enjoy quality time with Hunter over the past couple of months and live a normal lifestyle until a few days ago which I don't think would have been the case if we had started chemotherapy a few months back when she was first diagnosed. The oncologist has recommended that we now start 1st line chemotherapy with cisplatin + 5-Fu followed by a clinical trial cetuximab ( Erbitux) + BKM 120 (Buparlisib) which is a relatively new drug for metastatic cancer should first line treatment fail. Will keep the board updated as to how we go once we start as I know there aren't many of us who have gone through this regime and hopefully this treatment will be able to relieve Jen of her symptoms and earn us more time while new treatments and trials continue to become available for patients like her. Your prayers and thoughts have always been a huge comfort for us and I will continue to provide what information I can moving forward. Jay
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | I wish and pray with all my heart that things go well, Jay. Love, prayers and thoughts to you, Jen and Hunter. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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