| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Michael Erbitux shrank my tumor within weeks. Amazing response. It's the Martha Stewart drug of cancer :){explication, she went to federal prison over selling Erbitux stock on insider info and lying about it to the Feds) Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | The NCCN guidelines are on the treatment part of the site. These are written by the biggest and most experienced cancer institutions as a group. Chemo as a mono therapy is only used to prolong life, and in oral cancers is not curative. If you have positive nodes this would not be an option for you. (Especially when you consider that the lymph system is oral cancer's pathway to the vital organs of your body where it does the most of it's deadly work.) Once it has access to this system pathway to spread, using some half measure because of a desire to limit long term issues, would be less than wise in my mind. Erbitux's method of action is to disrupt a cells ability to reproduce, not to kill it, this does have positive benefits, as it gives the radiation an easier task of killing a slower growing population of cancer cells. It is not approved as a monotherapy either. David, OCF is helping to sponsor with several other funding sources, a small study being done at MDACC, James Cancer Center, and Dana Farber to look at the idea that a lower radiation dose would have the same effect of kill as the current standard dose in an HPV positive population. These very intelligent researchers already know that chemo alone would not be the path to destroy these more responsive cancers, but perhaps lower dose radiation might be. It will be several years before there was an answer to that question.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | 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 | Man who would want to be that HPV+ test subject? I mean how do they determine how low they can go? If you survive at 50 gys but don't at 45? I'm all for reducing the Tx and hopefully therefore side effects in OC HPV+ patients but ultimately they are risking lives to reduce side effects which in my case and my age are minimal. Guess I need more info on how the study will be conducted but these are just my quick thoughts. I just e mailed Dr Trotti for his comments.
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: Dec 2009 Posts: 6 Member | OP Member Joined: Dec 2009 Posts: 6 | Thanks. I'll be sure to keep Martha in my thoughts while I'm getting my treatments! Thanks again.
Michael (49) 10.24.09 DX Tonsil Cancer - SCC Stage III T3N2B/ 12.14.09 Tonsillectomy Surgery/TX:Chemo; 1.5.2010 Eurbitux started; 1.12.2010 7weeks/ TX:RAD 35 concurrent 2 lymph nodes on left side, 1 lymph node on right and back of throat; 1.26.2010 PEG; 6.24.10 Clear PET; 7.8.2010 PEG removed.
| | | | Joined: Dec 2009 Posts: 6 Member | OP Member Joined: Dec 2009 Posts: 6 | Kelly - Excellent. Thanks for your help.
Michael (49) 10.24.09 DX Tonsil Cancer - SCC Stage III T3N2B/ 12.14.09 Tonsillectomy Surgery/TX:Chemo; 1.5.2010 Eurbitux started; 1.12.2010 7weeks/ TX:RAD 35 concurrent 2 lymph nodes on left side, 1 lymph node on right and back of throat; 1.26.2010 PEG; 6.24.10 Clear PET; 7.8.2010 PEG removed.
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