| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Bill,
Welcome to OCF. This is the best site out there. There are so many wonderful people here with a lot of great information.
We understand your shock but I promise, it will get easier. I also go to Fox Chase and there is another person on this site that goes there too. It is a good hospital.
Good luck to you and I look forward to hear how you are doing.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Bill,
Do you have a caregiver or a strong support system? This is a tough thing to go through alone. My husband had stage 4 base of tongue cancer in 2007. The treatments were hard, but he's doing great now!
He has nearly normal saliva and can eat and enjoy anything. I'm sure your docs have told you this, but you should try to bulk up before treatment as it gets a little hard to keep up with calories midway through.
Margaret
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | Margaret,
I have a wife who will by me for the long haul. My children and my church family will be there for me also. It is good to hear that so many people have been where I am going and are still surviving! That will be me someday!!!!!!!!!!!!!!!!!!!
Bill C
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | The thing to keep in mind is that it's not the death sentence that it used to be, especially when it's caught early. The radiation is tough, esp after the first couple of weeks, and even gets worse for a couple of weeks after the last 'nuking', then it will start to get better. Pace yourself; the Rule of Thumb is on month of recovery for every week of radiation.
If they don't have a PEG (stomach feeding) tube scheduled, you might want to ask about it -- Better to have it and not need it than the other way around -- Most of us needed it to keep our nutrition up -- The ones who didn't need it spent a lot of time hanging over their sinks wondering if they would be barfing up the food they so painfully swallowed...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Bill,
I was treated at Fox Chase at the main compus in Phila.. Although my situation was totally different than yours (see my signature), you can take comfort in the fact that you are being treated at one of the best cancer centers in the country.
As you can see there are many OCF members that are doing extremely well after tonsil cancer and they will help you get through this.
Where in PA are you located?
Good Luck
Jerry
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: 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 | Good luck and let us know what the results are.
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | Jerry,
I am in Pottstown. The Hospital in town has a Cancer center that is affiliated with Fox Chase.
Bill C
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | 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 | Hi Bill, welcome to OCF. I see you are in Pottstown. I work in Allentown and live up the line in Lehighton. There are several OCF members who are all within an hour of where you live.
You will find lots of support on this site, so will your wife. There are many caregivers who join too.
If you are able to eat, try your best to eat now. Once everything gets started it may be quite a while before you eat properly again.
Best of luck with your PET results and also treatments.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Bill,
We're not too far apart. I rarely get to Pottstown, but know some dentists up there.
Good luck with the radiation and don't hesitate to ask if there is anything I can do.
Jerry
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Bill,
Welcome to OCF and I'm sorry you're here. Just out of curiosity...Did you get your fluoride trays made yet?
my best and keep those calories up....
Ray
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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