| | 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 | Christine I am always in awe that you ask how I am doing (as no doubt you do with so many others). You have so much going on and today is the 1st of August here which I know is going to be big month for you.
You are always so thoughtful and supportive on this site and Facebook.
My thoughts are with you and I send a big {{{hug}}}} from the other side of the world.
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Christine,
I just read your posting from Thursday. Wow, you are so amazing. As always pragmatic and with a plan. I have learned much about what an indomitable spirit is through you, my friend.
I hope all is going well in the transition to your new home and I look forward to talking to you soon
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Today the moving went very well. Im almost completely moved out of my old house in the woods now. I dont like going there at all without my dogs. The house just doesnt seem right without them there to greet me. Its especially different now that its empty, all but the garage and 2 closets.
Tomorrow I will finish cleaning it out, lock the doors and not go back. That chapter is over. I have my bike and live right next to a large park where I had taken my children many times when they were little. In a few minutes, Im going out for a bike ride to ease my mind.
My jaw is sore and swollen now. It hurts just to touch my cheek. This makes me worried, which I need to take my own advice ...worrying wont change anything. I will see my doc in a few days, not much can be done right now anyway. I have pain meds and magic mouthwash. I still refuse to waste my day, I will have plenty of time later to sit around not feeling well.
Thanks to everyone for their well wishes. Its something that encourages me to keep going. Im a very strong person, but sometimes even the strongest people can be weak.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Christine, I was out of town for a few days and am just catching up. You are a strong woman and in my opinion one of the bravest on here. You have been through quite an ordeal. Just want you to know that I have been and will continue to pray for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez you sure got moved fast Christine. But you never seem to lag any on whatever you do. I wish you well on everything that you have to do , including the bike rides. Just listen to your Drs and then to yourself. LOL I would bet on yourself. You are in my prayers and I will say a special on for you tomorrow morning in church.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Lets hope that bike ride makes you feel better.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Hang in there! This dreary weather doesn't help one's spirit's either. Your dogs are settling in very well. Peanut is so funny-she's one tough cookie. She did chase my son out of the house the other day-AFTER we walked her. We all can't wait to see you on the 23rd. I think my daughter wants to meet your son!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Christine,
i keep checking this thread to see how you're doing. Your spirit is amazing. Your friends here and their support for you is amazing. I hope things go well, and even though the recovery road will be long and tough, you'll get there.
And I'm with David. Hopefully, that bike ride will make you feel better. You are physically strong, and that counts for a lot.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sue, its nice to hear good news about the dogs. Roxie is the scary looking one who is a sweetie, loves everybody. Peanut is the tiny terror, she has alot of spunk for her age. Your daughter is a very nice girl, you have done a good job I cant wait til the 23rd to see you guys and the doggies. But its also my last day with life as I know it. In that respect, Im not in a hurry.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Christine,
Your strength continues to amaze me. Might I say though, that although your body may change, your spirit will still be yours. I suspect that no matter what the doctors or that nasty cancer throws at you, your heart will still shine through. And that is more important than any physical limitation you might have.
You remain, as always, in my prayers.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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