| | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Hello Everyone: New to this site and this horrible disease, but this site has taught me so much already. Am taking all of your wise advice. I am 2 months post-surgery and waiting for radiation to get started. Still need to get the mask made and new CT scans. Just had my remaining lower teeth extracted last week so waiting until I get the go ahead to start the rad treatments. Thankfully, for now no lymph node involvement so no chemo is scheduled. I've been going back to read all the old posts and appreciate the info all being in one place. Before I found this site -- the info on the internet was confusing and very hard to understand.
Thanks Christine B for the tip on making the intro page.
Ingrid K.
Facebook Name: Ingrid Kardynalski, Huntley, IL
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hi Ingrid, and welcome. If you've been getting advice from Christine you've begun with the best. I'll keep the good thoughts flowing your way.
david 2
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
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome to our OCF family Ingrid,
Best wishes for your upcoming rad treatments.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Hello Ingrid. My sister had the same surgery 6/2/10. Had 30 rads and 3 Erbitux(stopped because of rash). Welcome to OCF. You have come to the best place for answers and support. As for now eat everything and anything you can before rads. You need the weight and it's going to be hard to eat for alittle while. Glad to hear there wasn't any node involvement. My sister was lucky with that also.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | 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 | Good job Ingrid!!! Now everyone will be able to give you a proper welcome! Hope you are navigating the website without too much difficulty. There is so much info available here on the forum plus there are also many interesting articles and news stories on the main pages. You are definitely in the right place for comprehensive info on oral cancer. Sorry you have had teeth removed. Its so much better having them taken out now than later. Do the best you can with eating before your treatments start.
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: Feb 2011 Posts: 8 Member | | Member
Joined: Feb 2011 Posts: 8 | Good afternoon. I am primary caregiver husband Lewis. He is 50 years old,non-smoker,with oral pharynx malignant neck tumor, two small lymph nodes affected. Stage 4A. It is supposed to be contained. He gets radiation 5X per week and is having Cisplatin chemotherapy every three weeks. I don't know if I am posting this information in the right order or in the right place. He is in his third week of treatment and starting round #2 of chemo tomorrow. I had some questions. Is this the right place to start?
Primary caregiver to Lewis age 50. Non-smoker, radiation 5x per week, cisplatin 3x over eight weeks. Stage 4A; tumor and two lymph nodes but contained.
| | | | | Joined: Jan 2011 Posts: 23 Member | | Member
Joined: Jan 2011 Posts: 23 | you have done what I did when I started not to long ago. go to topic options, pic new topic and ask your questions. Then it will be your own post. hang in there everyone is great at helping you around the site. As I am a beginner too. how did the first round of chemo go? Hang in there spring is coming!! Ceazar
Ceazar
Father 66yrs
S4 SCC left BOT
DX Jan 2011
X-smoker
Peg 1/31/11
chemo Cisp, 5fu, tax
Heart attack 3-17-2011
7 Weeks Rad with erbitux
Peg out Aug 2011
Pet Sept 2011 good (no activity)
Pet Dec 2011 tumor hot
| | | | | 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 Caregiver, welcome to OCF. Before long you will be navigating this site like a pro!!! In order to get the most responses and attention to your post, ceazar is right. Start a new post of your very own. That way everyone will give it the attention it deserves without taking away from the original poster (sorry Ingrid). Im going to send you a private message (PM) with info to help you with the navigation. Look for the flashing letter next to your My Stuff tab. Click on messages.
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 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 | Caregiver,
Has his slides been tested for HPV16?
The 2nd round of Cis was the beginning of my bout with long lasting nausea so try and help him stay of top of that.
You must get him to consume at least 2500 to 3000 calories EACH and EVERY DAY. He must also drink at least 48 ozs of water EACH and EVERY DAY. Look into Carnation Instant Breakfast VHC which has 560 cals in a small 8 oz can. This will really help as the swallowing gets more challenging. He must continue to use his swallowing muscles throughout this Tx no matter how painful it may seem at the time.
Did they do a pre Tx hearing test?
Check his last blood test to see if TSH levels were checked.
We will be here 24/7 to answer any and all of your questions. It may get very bad for him over the next 6 weeks or so but then it's onto recovery so remind yourself and him that there will be a light at the end of this 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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ingrid, welcome tp our home and family. I agree that Chrisitne is one of the best for advice. I ahd all of my uppers and lowers removed, not by choice tho. Now it is a never ending struggle but supposed to be worth it. Good luck with everything and the best to you.
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
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