| | Joined: May 2013 Posts: 3 Member | OP  Member
Joined: May 2013 Posts: 3 | Just found this group - 8 months post treatment and feeling great. We have to reach out and help one another. Gaining the weight beforehand, working at the gym as long as I could and then getting back, and amazing loving husband, no PEG, dealing with the lack of taste and saliva (it is better now though not where I would wish it), and savoring each day. Since I was diagnosed in June (started treatments of 35 radiations and only could take 5 chemos) decided to host a celebration of life for folks who have played important part in my lifetime. Amazed at who is coming from afar and near! Life is a gift; cancer teaches you to slow down and savor it more. I think I have learned.....I am happy to help you if I can.
right tonsil primary HPV stage IVa at age 59 June 28, 2012
started radiation 7/25 until 9/11; handled chemo cisplatin weekly for 5 weeks; hospitalized last week of rads
clean scans Feb 2013; monthly scopes
very very happy to be alive and more aware of savoring life!
| | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | I love hearing this! I hope to say the same in about 8 months! Big hugs to you!
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | 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 | Deb, welcome to OCF! I LOVE your positive attitude!!! Congrats on your successful treatments. Have a terrific time at your celebration 
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 2013 Posts: 3 Member | | OP Member
Joined: May 2013 Posts: 3 | Go Rosy - the fact that you are reading this with a week to go is a HUGE plus (I was hospitalized my last week of rads....though I could only tolerate 5 weeks of displatin).....keep up the great attitude! You can do this. Getting your head around it is tough....I did find a great counselor to lean on for 5 or 6 visits too as I did realize the enormity of all this (about at month post 3). HUGS!
right tonsil primary HPV stage IVa at age 59 June 28, 2012
started radiation 7/25 until 9/11; handled chemo cisplatin weekly for 5 weeks; hospitalized last week of rads
clean scans Feb 2013; monthly scopes
very very happy to be alive and more aware of savoring life!
| | | | | 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 |
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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Nice post, Happy your here.
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | It's lovely to meet you, Deb. I'm so pleased you're doing well.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 187 Likes: 3 | Thank you for joining Deb. Your story brings hope and encouragement to those of us on the front end of the journey.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome Deb!
Glad you found us! Sorry you had to!
E
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | The Debster,
I also didn't find this treasure until post Tx. I also had to go to the ER 3 times and spent a couple of days in the hospital post Tx so been there done that and I feel for you.
It's all up hill from here and your recovery can take every bit of 2 years so you ain't finished yet. I saw my BIGGEST taste and saliva improvement 14 months post Tx and even saw a slight improvement at 24 months. The first year is the most difficult but once you cross into that 2nd year it's pretty much smooth sailing.
Glad you want to "give back". 5 years ago, I started a free oral cancer screening which has now morphed into a free cancer screening day where we screen for skin, oral and prostrate. Next year promises to be even bigger.
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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