| | Joined: Apr 2012 Posts: 2 Member | OP  Member
Joined: Apr 2012 Posts: 2 | My name is Greg and I am a 54 YO man that was diagnosed with SSC of the tonsil on April 2. I was very fortunate that my dentist caught it during a checkup and was immediately referred to a great oral surgeon with connections to the team at the University of Washington Medical Center. I am almost halfway through my treatment and hoping that things continue to go as well as they have so far. Toughest part was the first chemo treatment because I wasn't 100% certain of what meds to take when and got pretty sick. Also it took me by surprise to completely lose my taste sensation with my first chemo. Thought I might tough it out and not need the tube that was placed before treatment, but have realized that it's probably smarter to take advantage of it to help keeps the calorie and liquid intake when eating is such an unsatisfying experience. Wow, what we take for granted.
I have received a lot of good info from this site and appreciate everybody's effort in compiling info and adding their personal experiences.
Age 54 when diagnosed on 4/2/12 with HPV 16+ SCC T2N2bM0 of left tonsil and two nodes. Started 3 Cisplatin,33 RADS on 5/14/12. No surgery scheduled.
9/02/20 diagnosed with recurrence of lymph nodes on right side. 9/28/20 bilateral neck dissection. Prescribed chemoradiation to start on 11/11/20.
2 Corinthians 1:3,4
| | | | | 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 | Hi Greg! Welcome to OCF! Sounds like you are doing pretty good getting thru your treatments so far. Keep up the good work with your hydration and nutrition and you will sail right thru. Keep an eye on your hearing as cisplatin can cause some loss of high frequency hearing in some patients.
Best wishes with everything!!!
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: Jan 2012 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2012 Posts: 42 | Hey Greg, this seems to be the common age for tonsil cancer. I took the surgery route, so different challenges than chemo. A few months ahead of you and glad to report life gets much better soon after treatment. Keep us posted !
Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
| | | | | 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 | Have they tested your cells for HPV? Even with the tube you must continue to swallow daily so the muscles don't "forget" how to swallow. What chemo and frequency? Good luck with the Tx.
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: 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 | Hi there... Welcome - rads isn't easy but it is doable... and there are a lot of people here who've been where you are now so despite the fact that you had to join our little club (bad news) there's a lot of support and info to be had here... Hugs... and take care.
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: May 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Hi Greg and welcome. I too, got my tube in before I started treatment, as I'm very thin without so much as 5 lbs to lose. I'm now starting my 6th week of radiation (and will have my 3rd Cisplatin treatment on Tuesday). So far, I've used my tube for practice (thought I better know how to do it, just in case), and right after chemo....I'm still swallowing well for this far into treatment (tho many things sting, so I have to be careful)...Oh, and I have lost only one lb. so far...
Lots of support and knowledge here....glad you found this board.
p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | | Joined: Apr 2012 Posts: 2 Member | | OP Member
Joined: Apr 2012 Posts: 2 | Hi, David,
I am HPV16+. The swallowing has not been a big deal yeat at 5 weeks in.
I'm getting three rounds of Cisplatin and 33 rads IMRT
Last edited by Greg R; 06-13-2012 04:54 PM.
Age 54 when diagnosed on 4/2/12 with HPV 16+ SCC T2N2bM0 of left tonsil and two nodes. Started 3 Cisplatin,33 RADS on 5/14/12. No surgery scheduled.
9/02/20 diagnosed with recurrence of lymph nodes on right side. 9/28/20 bilateral neck dissection. Prescribed chemoradiation to start on 11/11/20.
2 Corinthians 1:3,4
| | | | | 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 | Ugh, I had the "three big bag method" and it wasn't fun. Good luck and please ask any questions you may have. Unfortunately your worse time is yet to come but be sure we will help you as much as possible and you will walk out of that nasty tunnel.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 |
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Greg, adding my welcome. You're getting rads and chemo, I had rads and surgery, and both about the same age at the time. I wish you all the best. As others have opined, the treatment is tough no matter what you go through. But doable, and you sound like a strong guy.
Hang in there, buddy. We're all pulling for you and here for whatever you need.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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