| | Joined: Apr 2014 Posts: 4 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: Apr 2014 Posts: 4 | I finished treatment end of September 2013 - radiation and chemo. The biopsies continue to come back negative, have had three in a period of four months (January 2x and April 1x). Tissue taken from left tonsil fossil, back of tongue and by voice box. Pet Scan is inconclusive. I will be going for another CT Scan in a couple of weeks.
Docs say there is necrosis - dead tissue - which seems to be causing them concern. I guess if there is no cancer, then tissue should be looking pink and healthy?
I'm leaning on the biopsy results that there is no cancer, pathologist said last biopsy there were good samples and ENT surgeon said he took plenty of samples.
I'd appreciate your thoughts/comments on this. Thanks.
61 year old female, DX July 2013 Tonsil/BOT Stage 3 HPV16 Clinical trial, IMRT 35x (six treatments within five day period)
Cisplatin 1x Cetuximab 3x
Biopsies negative, Treatment team have Clinical concerns. Feeding tube, inability to swallow without aspirating.
Life has changed - 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 | When did they find necrosis and where?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2014 Posts: 4 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Apr 2014 Posts: 4 | Appointment of April 10th, I asked to see the tapes of the scopes and they went back to Jan 2014 and necrosis was there, however, they did say it looked marginally better now than in January. I believe it is a base of tongue.
61 year old female, DX July 2013 Tonsil/BOT Stage 3 HPV16 Clinical trial, IMRT 35x (six treatments within five day period)
Cisplatin 1x Cetuximab 3x
Biopsies negative, Treatment team have Clinical concerns. Feeding tube, inability to swallow without aspirating.
Life has changed - happy to be alive!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Happy Easter and good luck with the necrosis!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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