| | Joined: Feb 2010 Posts: 6 Member | OP  Member
Joined: Feb 2010 Posts: 6 | Hi,
Just dippin' my toes in the water...checking this out. I wonder if anyone else is new and less than 6 weeks post surgery. Just wanted to know how your mind and heart are coping with all of this. I am positive for the most part, but sometimes struggle with the medical/technical lingo. Anyone else?
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Hey Roy,
I'm three months out from radiation treatments, No surgery, but the mental thing we all know about. This is a great place to come to discuss coping. Many here have had the same treatment you just went through and a few are in or near Washington State.
Most folks at your stage in treatment also have radiation, chemo or both either before or after surgery. Are you scheduled for more treatment?
Kelly
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | welcome roy!
since u will be getting a PEG soon, please read up on PEGs in these forums. alot of great info. the dr will downplay this surgery, it is tough. use the search box at the top right corner of this page. just type in PEG and it will get u to any thread on this subject.
glad to hear u are doing better after the surgery.
rads and chemo will be tough, but with laurie by your side, yall will make it!
keep us posted!
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Feb 2010 Posts: 6 Member | | OP Member
Joined: Feb 2010 Posts: 6 | Hi Kelly, Thanks for posting. I am set to get some dental work first then heal for a week and off to the races. 7 weeks of radiation and chemo as well. I have to go in next week to get fitted for a mask. I am not sure when i am to get my peg. I will post as more details come in..thanks for your kindness.
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hello, my name is Eric and I'm an addict. I enjoy long walks on the beach, cuddling by the fireplace and basking naked in the moonlight. I'm not sure if that last bit was too much information...did I say that out loud?  Glad you are finally on these forums Roy and I hope your last singing gig before treatment went well! Talk to you on Facebook! Eric
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: Dec 2009 Posts: 108 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2009 Posts: 108 | Roy
Carol hasn't had surgery but she has finished her first week of rad and chemo. Carol had her teeth pulled one day, had a week's "rest" then the PEG surgery and rad started the following week. Homershoney is correct about the PEG. Dr's and nurses really down play the PEG surgery. Almost zero info from them.
Best of luck with your treatments.
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009
Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw
Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap
ypT4aN0 HG Mucoepidermoid carcinoma
2nd Recur 1/18/11 - Tumor lower left lip
Surgery 2/9/11 - Canceled - Inoperable
3/29/11 - Died
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | dont worry eric, my volume was down so i didnt hear a thing 
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | 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 | Roy, Did they mention HPV to you? Were your slides tested?
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 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Eric -
Could you repeat that please? I don't think I heard it.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Roy, Glad you made it here. You have hooked up with many of us on FB, but this is the place to be for answers to any questions you might have and some that you didn't even know you had.
Good luck with the balance of your treatment.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Feb 2010 Posts: 6 Member | | OP Member
Joined: Feb 2010 Posts: 6 | Thanks for the visual Eric, i could have done without the last part. I have to admit you caught me off guard. I thought you were a shy kind of guy...good to chat with you. see you around.
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Feb 2010 Posts: 6 Member | | OP Member
Joined: Feb 2010 Posts: 6 | I have requested the test and have yet to hear back. Hope we will hear soon. thanks for post..
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Feb 2010 Posts: 6 Member | | OP Member
Joined: Feb 2010 Posts: 6 | Thanks Jerry, it is great to have a place where i feel understood and there is real first hand experience. I have to admit it is a little overwhelming to think about what has happened in the last 45 days.. i have gone from ignorant bliss to fully aware of a problem i never knew existed. Thanks again for your support and prayers...
God Bless
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Feb 2010 Posts: 6 Member | | OP Member
Joined: Feb 2010 Posts: 6 | Thanks Jerry, it is great to have a place where i feel understood and there is real first hand experience. I have to admit it is a little overwhelming to think about what has happened in the last 45 days.. i have gone from ignorant bliss to fully aware of a problem i never knew existed. Thanks again for your support and prayers...
God Bless
Roy
Roy (52) Non smoker, non drinker, Dx 11/15/09, SCC of right tonsil, T2N2bM0, Stage IV, tonsillectomy and ND on 1/8/10
radiation imrt x33 (70gy), chemo (Erbitux) 1 x a week for 6 weeks 250mil. plus 400 mil. loading dose first week.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Roy,, it will all come to pass and you just not remember much of the things that are done to you. Our world is beyond most people and they just can't understand what we go thru. Yep, I have had the teeth removal, then rads and chemo and so after rad seed implants and was in isolation because of radioactivity. I made it thru it even tho I was given up for going to die. LOL Little did they know how tough we can be. I wish you the best of everything and will say to eat as much as you can now and drink plenty of fluids because you will lose weight. I went from 220 to 147 in a short time. Believe me it is much harder to put the weight back on because you lose your taste and appetite. Welcome to our family and the door is always open for you to post or ask questions. As you have ssen, with Eric ,David and th eintelligent peole that have read you post, you will get a lot of info fast. I should mention that you will probably get as weak as a new born from muscle loss. his takes some work to get back too.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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, Roy. Glad to see you are aleady settling in and making some friends both here and on FB. Eric suggested you and your wife as friends to me there. This is still the best place for any medical info about OC. Dont forget the main pages of OCF too. There are search features in both sections.
Since this is before yor treatment has begun, you should get your hearing checked. If you are to be given cisplatin for chemo, it has a nasty side effect of hearing loss. Watch very closely for this, its irreversable. Now is also a great time to eat like crazy. All the favorites you ever craved, eat them now. Food will taste different once you start treatments.
I had my peg tube for 1.5 years the first time and now 6 months this time. Ive picked up quite a few tricks along the way. If you need pointers, please feel free to ask.
Best of luck 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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Just want to add my hello and welcome. And to totally agree with the eating advice. It may be a while before you can enjoy food again.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Roy - You are at the right place, Everyone here can offer very good advice. Stay positive...I am a little over 2 years out and I am 98% back pre - cancer. I now go weeks without thinking about it and many issues/treatments seems a distant memory. Good luck, you can and will beat this thing.
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | A fellow singer!
hope the gig went well also.
my band and i are going to start rehearsing in a couple months again...can't wait!
best of luck with the treatment mate.
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
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