| | 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 | Congratulations to you, Jenny and little Hunter, heroes all!!!
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Firstly I would like to congratulate you both on reaching the end of Jen�s treatments.
You have written a wonderful update summarising your experiences from start to the finish.
Keeping it mostly all on your original thread makes it so easy for others to follow and learn from.
I for one have been reading all the updates you have posted on your journey.
You obviously have a special close relationship and the love comes through so clearly with every post over these last 4 months.
May Jen�s recovery be speedy and problem free so that the 3 of you can enjoy your new normal lives.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | 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 | Thanks everyone for their well wishes & sorry it's taken a bit of time to post. Cannot believe it has been already 1 week post-tx and this time last week was the very last day of treatment.
Unfortunately, the past week hit us hard (as expected) with the thick mucous playing it's part along with a very sore throat & neck which means we are still using the Nasal Gastric tube for all of Jen's nutritions. Furthermore, the small c started to do it's bit as well and all this has resulted in fatigue, nausea and overall feeling pretty bad due to the lack of sleep.
Medication wise, still on 30mg MS Contin + Paracetamol for breakthrough pain and using the magic mouthwash + baking powder to counter the thick saliva & sore throat. Have taken out the Oxycontin due to the problems we were facing with small 'c' and have added some medication to counter this also.
However, it looks like the worst is over and hopefully things will start turning around over the next week or so. Having the baby around full time is a huge boost plus we have just had my parents arrive for 6 weeks during the festive season to help us out in and around the house.
First follow-up meetings with our ENT doctor & RO next week and very eager to see what they have to say. Praying hard it will be mostly positive news and I will write another update next week for you all.
God bless and I hope everyone has a wonderful lead in to Christmas & the New Year.
Kindest Regards
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Sounds like you are taking care of things and it's great to see the positive attitude you have in getting through the most difficult part of Rad Tx. How wonderful that your parents are with you to help around the house, and to share with you all the joys of Baby Hunter! Praying for more good news next week.
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: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Jay,
I have full faith that Christmas will find Jen feeling much much better and able to enjoy Hunter's first Christmas. Just think, in 2 weeks the worst is all over and evey day will be so much better.
Take care, and keep writing.
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: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Another week gone and we are now coming up to two weeks post tx. Since my last post, we have now recovered incredibly well with Jen now back onto taking nutrition & fluids orally (100%) and pain levels have subsided to a more manageable level. The small 'c' has subsided also and the radiation burns are now all but gone (it has disappeared 'miraculously') since around 2-3 days ago when it was at it's worse. Medication wise, currently taking 20mg MS Contin every 12 hours and will slowly be taking this off the list as well meaning we will hopefully be medication free by Christmas. Had our first meeting with our ENT specialist on Wednesday, and everyone is a bit in awe as to how Jen was able to manage her weight and keep her 'glow' despite going through maximum treatment,surgery & labour! She said that Jen was doing amazing compared to all of her other patients, but was cautious to say we were fully out of the woods yet and will have to give it a good 3 months before we were able to run a proper scan. We are now on 2 month check-ups with the ENT docs, and we have our first follow-up meeting with the RO post-tx tomorrow morning and hopefully that meeting goes equally as well and we get to remove the Nasal Gastric Tube (hooray!) to boot  It just proves that my wife is much more stronger than I am - and she is the one who quietly runs our household Although progress is slow and we are not 100% yet - we can slowly see the light at the end of the tunnel and hopefully Jen will get some of her taste back and move onto solid foods and fully recover with the burns & pain over the next few weeks. Will keep you all posted on how we do over the festive season, and I wish you all the pleasures & joys that Christmas has to offer, and may 2013 be a year full of happiness and hope. 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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sounds great and it sounds like she is walking out of that tunnel as we post. Don't fret if she has some bad days during the early weeks of her recovery. We all did. Even if she does they will eventually disappear. Do be prepared for a possible 2 year recovery period. Don't get concerned if that happens as that's pretty normal. Taste and saliva SLOWLY return. For me it did take all of 2 years before I saw my last improvement.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Jay, that is so great to hear! I knew she would, but it is always gratifying to be right, lol!
Tell Jen she's my hero,
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: 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 | Such good news and just before Christmas and New Year's too. Very happy for you guys.
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: 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 |
That's great news.
I wish you both a fabulous festive season with your Baby Hunter and Family.
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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