| | Joined: Feb 2014 Posts: 3 Member | OP  Member
Joined: Feb 2014 Posts: 3 | Hi everyone--I'm Steve and I'm a research forester living in Seattle. I'm married with a daughter and son (who is married with 2 sons). The kids and grand kids all live in the Seattle area. Here's my story so far: Diagnosed with tonsil cancer stage 2-3 Dec 2013. HPV+ squamous cell carcinoma. 3 lymph nodes involved (right side of neck). Tonsillectomy Dec 17th 2013. Four molar teeth pulled in early Jan 2013 in preparation for radiation/chemo. Started chemo (Cisplatin) and radiation Feb 5th (6.5 weeks of daily radiation with 3 chemo treatments over that period. My last radiation is March 21st. Treated at University of Washington Hospital and Seattle Cancer Care Alliance--I feel very lucky to have these great institutes for my treatment. 60 yrs old. I am so happy I found this forum!
Diagnosed with tonsil cancer stage 2-3 Dec 2013. HPV+ squamous cell carcinoma. 3 lymph nodes involved (right side of neck). Tonsillectomy Dec 17th 2013. Four molar teeth pulled in early Jan 2013 in preparation for radiation/chemo. Started chemo (Cisplatin) and radiation Feb 5th. Treated at University of Washington Hospital/Seattle Cancer Care Alliance. Radiation will end March 24th. 60 yrs old.
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Welcome, sorry you had to find us. HPV got me too. The treatment is brutal but effictive. I am out 16 months and doing fine. Others will be along to say hi, as well. My advive is post often and ask questions. The people here have seen just about everything, and are happy to share there thoughts and feelings.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | Welcome! You sure seem to have a warriors attitude. That will serve you well.
If you have any questions just ask away. You are among friends!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome to OCF, Steve!
Not too late to join and great timing to get up to speed with the numerous side effects of the chemoradiation treatments you are in now.
Usually, about 3 weeks in you start really experiencing the side effects. There are quite a few different kinds so please post what you are experiencing and we can offer tips to ease the pain and suffering. Once in awhile, someone dodges many of the side effects but some seem to get whacked with a lot. Everyone is different here. Again, welcome. Don
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey there welcome to the group. You will get through it but it won't be a cake walk. There are a lot of things that you should know prior to radiation (eat like you're starving for as long as you can - starting now!) so read up on what to expect. Plan for the worst, hope for the best, and we're here. 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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Welcome to OCF, Steve! You have found a wonderful resource to help get your thru a few rough weeks. Ive heard some great things about the treatment facility you have selected. Good choice!
The best advice I can give you is to focus on what is in your control.... your intake. Every single day you should take in a minimum of 2500 calories and 48oz of water. These are minimums, taking in more will make this whole thing much easier. Even taking in 80oz of water and 3500 calories daily is not too much for what your body is going thru. These minimums should be done every single day for the next year to help also with your recovery.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Steve - Welcome to the family. I had tonsil cancer last September ( HPV positive). Since I had no lymph node involvement (they caught it very early) they did no chemo on me. I got lucky and suffered few radiation related side effects. You may or may not also be that lucky, let's hope so. Still I lost 40 pounds over the treatment period. You will lose your taste, and with that comes the loss of appetite. So, now, while you can still taste, eat like a horse. Try to put on some extra. Hang in there, we all made it through, you will too. Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | Welcome to the group and sorry you have to endure a trial like this. Here you will find hope and encouragement. Like minded warriors and trail blazers. Ask and follow the advice. I am 7 months out and progressing well. I felt the same as you when I found this group. I was fortunate to find before my treatments started.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Steve, welcome to the family. This is a great bunch and we're here to help you in any way we can. Sounds to me as though you have a great attitude, a terrific nuclear family and a solid medical team. So you're well ahead of the game. You and I are also the same age, so I'll send some extra 6 decade vibes your way!
Keep us posted, and courage. You will get through this.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome Steve, another tonsil cancer survivor here. Sounds like you are finishing up your 3rd week, so things tend to get tougher from here. If you have any questions, ask. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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