| | 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 |
Jim:
Not sure if my experiences are helpful to you. My cancer was located in 2 spots. One was the left cheek the other was left top of my mouth. My recurrance is also left cheek but down more towards the gum line. I had chemo and radiation. Surgery is scheduled for next week to remove the recurrance tumor.
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 | BOT = Base of Tongue. That was determines to be my Primary and other than the sides of my neck where the nodes are concentrated, aiming the rad gun right under my chin to shoot the beam straight to the back of my tongue were the 3 most concentrated targeted areas.
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: Mar 2008 Posts: 19 Member | | OP Member
Joined: Mar 2008 Posts: 19 | Christine,
Good luck on your surgery. My ENT mentioned when I asked him if I had another recurrence, that he would probably use a laser type surgery. After my first/second occurence, they did multiple biopsies around in my mouth (under anesthesia) and found most has some form of atypia (but not cancer) - then later (just before my rad was to begin on one side of my mouth - supposedly with much less after effects) they found a SCC on other side. Then they switched rad treatment plan to entire oral cavity. How about your rad treatment plan - was it entire oral cavity? did you have mucositis problems/pain, still there? trismus?
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
| | | | | 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 |
Wow, you sure have had a rough time of it. My cancer was only on the left side of my mouth, so my radiation was concentrated on the left cheek and top of mouth. I had mucositis for about a month after treatment stopped. The came the dry mouth which I still have but not as bad. I do have problems with trismus. I can only open my mouth 2 fingers wide and thats with doing the daily jaw exercises. My saliva and taste are back at about 75% due to the right side not getting the radiation. My doc said the right would be spared. I cant complain too much about pain, its uncomfortable sometimes, but that could be due to my recurrance.
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 | | |
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