| Joined: Aug 2013 Posts: 20 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Aug 2013 Posts: 20 | Hi everyone. A family member was diagnosed with tongue cancer and has started radiation for 35 days and has had her first chemo a few days ago with two more to follow. The cancer was at the back of her tongue. I would like to talk with someone that has the same type of cancer. Thanks.
supporting my sister age 60, SCC tongue, Stage 1-2, peg in 8/26/13, 30 rads w/ 3x chemo begin 8/12/13, end 9/30/13 | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey there there are a few of us here... Were in Canada are you?  welcome
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: 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 | Most likely she was Dx'ed with SCC with a Primary at what's called Base of Tongue. Most likely she will receive a chemo called Cisplatin. She may even have had nodal involvement and if this is the case she will likely test positive for the presence of HPV. All of this is typical and if this is the case her prognosis is very good although her Tx will be difficult. Do encourage her to join this site as it will be invaluable starting now.
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 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | My diagnosis as well. Very close to 2 years post treatment and getting very comfortable with my "new normal". It ain't easy but it IS doable. You've stumbled onto a great place for info, advice and encouragement.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | 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! You will find tons of info and support here. Please encourage your relative to join as well. An informed patient is a smart patient. 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: Aug 2013 Posts: 20 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Aug 2013 Posts: 20 | It all started with a lump on her neck. I believe that cisplatin is the chemo she is getting. she already had one treatment August 12 and started the radiation at the same time. Her next chemo will be September 3. So far no major side effects. She is 60 and was a smoker but quite years ago. We are in Vancouver BC., Canada. Any helpful hints to help her along this early stage will be helpful. she needs to get cream to put on her neck....What brand did you all use?
supporting my sister age 60, SCC tongue, Stage 1-2, peg in 8/26/13, 30 rads w/ 3x chemo begin 8/12/13, end 9/30/13 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Sorry to hear, but welcome. Aquaphor was recommended, and another time Ceptaphil also. As far as washing, I used ceptaphil liquid soap, aquaohor bath liquid, and heard unscented Dove bath liquid. I never scrubbed my neck either, and had no problems, but everyone's skin is dufferent. The last to weeks, up to two or three weeks post treatmnt are the worst. Most don't start feeling the radiation side effects into 10-14 days, then the redness starts, dry desquamification, and then wet desquamifucation around the last two weeks, and only after a few days from chemo infusion, which are more acute, and subside more quickly once treatment is stopped, compared to long term effects from radiation. Good luck.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Aquaphor works great at first while the sunburn is red. If she develops open sores then try silver silvadene; the doctor can prescribe it. It works well for many. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Aug 2013 Posts: 20 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Aug 2013 Posts: 20 | She goes in on Monday for PEG. How many of you chose not to have Peg or did you have a choice.? They said she might not need it but it's there just in case. I don't think they gave her a choice in the matter...for those of you that had PEG, Did you have to use it?
supporting my sister age 60, SCC tongue, Stage 1-2, peg in 8/26/13, 30 rads w/ 3x chemo begin 8/12/13, end 9/30/13 | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I did not have a PEG, did not want one and was not forced to get one, although there was plenty of pressure to get one just in case.
It seems it is really necessary when one can no longer drink fluids, water and liquid nutrition. If you can get down liquid then to me a PEG is not critical as one can remain hydrated and nourished with liquids.
Later, you go back to eat soft foods and also mash up food in a baby grinder like I did. Soon enough you are going again.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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