| | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Thought I would take a moment the share some good news. Vince went for his CT scan last Friday, exactly 1 month post treatment. We got the results today. The ENT told us that the tumor board at University of Chicago has declared Vince to be in complete remission. The see no evidence of cancer, either by scan or exam.
Starting out with a large primary tumor that was deeply invasive into his oral tongue, with 5 nodes on one side, 6 on the other, trailing down his neck to just above his collar bone, we knew he was in for the fight of his life, literally. As expected, treatment was hell, although with the sage advice of many who have gone before us (including many on this board) & some particularly skilled docs, Vince was able to tolerate treatment relatively well. He's been back at work for a few weeks now, off pain meds, eating all nutrition with regular food, albiet with the expected dry mouth and some evening fatigue...overall, remarkable for a man who is 1 month post treatment!
We are beyond thrilled with the results, although, it's hard to really believe it's true. We were extremely pleased with the care he recieved at U of C, would highly recommend them to anyone looking for treatment for this dreaded disease.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | Ana, that's wonderful news! Congratulations. Karen
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Wonderful news, Ana - so happy for you and Vince!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Ana, Im so happy that everything has turned out ok with your husband!!! I hope you will go celebrate, you both certainly deserve it  Im pretty sure the hospital you mentioned is a major cancer center. Goes to show you that they really are living up to their reputation. Recovery can be a long process, your husband has gone thru so much and will be even more improved every month from here on out. Best wishes to you both!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Ana - Thanks for sharing such wonderful news! After all Vince and you have been through it is so encouraging to hear such a great survival story! You two really do need to go celebrate each and every moment from here on out!
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 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 | After just 1 month PT and he's been back to work for a few weeks!!!! He's my hero! He's definately one of the lucky few.
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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Thanks guys. It's still hard to really believe what the doctor told us. Vince has actually scheduled his first overseas trip for early Dec, just before his PET scan. I have been on him to make sure he rests and heals, but he's thriving on getting back to his normal routine. Best of all, after a total weight loss of 50 pounds, his weight has finally stabilized, he's in control of it, not continuing to lose.
Re: celebrating the good news, having my dear husband back in (almost) full swing to enjoy our son's senior year and celebrate our younger son's 13th birthday this past week was plenty celebration enough!
David, I'll share your kind words with Vince. I know Vince has been extremely lucky on the perilous journey and am also keenly aware that others have not. I struggled with whether or not to post his story, not wanting anyone to feel badly. Eric encouraged me to post Vince's success story, that it's been a tough year on the boards, that good outcome stories give hope, so here it is...:)
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | So happy for the both of you! Congrats!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Ana,
We always want to hear good news. It's what keeps a lot of us going.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | 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 | Ana,
It has been my experience on this site (not at all a mathmetically kept study) that appx 10% of OC patients on this site receiving radiation start having problems almost from day 1 and they suffer the most of all of us; appx 10% breeze through treatment and they suffer but the least of all and then the rest or a overwhelming majority of us start to suffer from about the 4th week of treatment thru about the 3rd week post treatment. There also doesn't appear to be any one or a combination of factors that dictate that.
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.
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