| | Joined: Oct 2013 Posts: 2 Member | OP  Member
Joined: Oct 2013 Posts: 2 | Hello,
I'm StevenS, new to this site and new to cancer. In July this year, I was diagnosed with cancer of the Oropharynx (left tonsil) affecting two nodes in my left neck. T1N2bmo, Stage 4. I just finished both chemo and radiation (9/24/13) and now I wait for results of my first PET scan as my body recovers from TX. I'm very happy this site exists as I try and weave my way through this. Thank you!
56yo. @ DX, nonsmoker, casual drink, awesome caregiver wife. Left tonsil, T1N2bmo, stage 4, HPV+16
G tube 7/22/13
Port 7/23/13
35 Radiation TX. finished 9/24/13
6wks.Chemo Cisplatin finished 9/17/13
Now recovering and waiting for first PET scan at 3-month post-tx.
| | | | | Joined: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 187 Likes: 3 | Glad you found the site. Awesome group of people who have gone through similar and worse. How is your post TX recovery going? I am finishing week 11 post and have had several of the best days in a row lately. Lot's of help, advice and encouragement here. Take advantage.
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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Steven
welcome to the OCF forum. You are sounding pretty perky for being only two weeks out of treatment, and I hope your recovery proceeds apace! I am not familiar with Orland - is it Northern or Southern California?
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: Oct 2013 Posts: 2 Member | | OP Member
Joined: Oct 2013 Posts: 2 | Hello Maria,
yes, I'm feeling perky today!...most of the mouth sores are gone and my neck is healing up nicely from the burns. My RO treated both sides of my neck. I'm taking Nystatin syrup every 4hrs.to keep mouth thrush under control. I'm still 100% reliant on my G tube and currently taking in six (8oz.) cans of liquid nutrition per day, plus 2 liters of water each day!...I stay active by pacing inside our house with 5 lb. dumbbells!...I hope to transition to some solid foods in the coming week! The most bothersome symptom today is the mucous that builds at the back of throat which I have to expel every thirty minutes so, or I start gagging!...I also have very low salvia production so eating solids is going to be a challenge!...
CG's are awesome!!...I hate to think where I would be without my wife there to help out!..
56yo. @ DX, nonsmoker, casual drink, awesome caregiver wife. Left tonsil, T1N2bmo, stage 4, HPV+16
G tube 7/22/13
Port 7/23/13
35 Radiation TX. finished 9/24/13
6wks.Chemo Cisplatin finished 9/17/13
Now recovering and waiting for first PET scan at 3-month post-tx.
| | | | | 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, Steven! Have you tried using a water pik on the lowest setting to help with your thick mucous? If not, give it a try.
It sounds lie you are doing very well with your recovery. Glad to see your intake is substantial. This is where most OC patients struggle. Keep up the good work with this for at least the first year post rads.
You may want to get checked out thoroughly before you attempt to eat and drink again. Those muscles quickly forget how to swallow and you could aspirate. Ask your doc for a barium swallow test to make certain its safe to eat and drink.
Best wishes with your continuing recovery!
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, and congratulations on your treatment completions, StevenS. That was my diagnosis also of the tonsil, radiated both sides. The rope mucus usually lasts 2-3 weeks after treatment, and will start to subside leading to dry mouth. Seltzer water helps cut through mucus, pinapple, papaya juice also, and some have used mucinex, robotusem. Take care.
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
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Steven,
I think that one of the things that helped my husband recover was that we took our dog for a walk around the yard whenever the weather wasn't too bad. When you feel like going outside, remember to wear a hat (broad-brimmed, or one of the foreign legion one with the fabric down the back over your neck) to protect your neck from the sun!
Best wishes to you and from me to your wife!
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Steven,
Congrats on getting through your treatments with your spirits high!
I'm especially glad to read that you walk around with 5 lb weights, staying fit is super important to the way you tolerate sid effects of the treatments (and their after-effects.)
I found that gargling with a mix of salt and baking soda to be very effective in cutting the thick saliva. The warmer you can stand the mix, the more effective it is, but even room temp it works pretty darn well. For me, anyway.
Good luck with your continued recovery and please keep us informed as to how you are doing!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | 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 | Were your slides ever tested for HPV?
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Welcome to the forum from another new member and one who shares your left side tonsil SCC and HPV, but who hasn't yet gone through the TX you have. Your story both amazes me ... and scares me. But this thread is about you, so congrats on having a good day and for keeping your spirits up.
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: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Welcome stevens the beginning of treatment is very similar to mine. And yes the lack of saliva will hinder your eating maybe even more than you think. but this symptom for most and definitely for me will get better with time. My radiation had to be modified to what ended up being less than someone without HIV+ status.(not to be confused with HPV+) and my MO could only give me Erbitux because I could not tolerate Cisplatin. Shawn u.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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