| Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Malwicker I wish you the very best in your treatment. Someone posted on the board a while back that Erbitux saved there life. Hopefully you will get some good results from your treatment. I know its no walk in the park but Hang in there through the side effects. Time will pass and you will be recovering soon. Good Luck Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | 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 | Malwicker - so happy this is working for you. The side effects suck but it sounds like you are slowly gaining ground so this is great. Hugs.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thanks everyone. I start seven rounds of Erbitux next week and was basically given the breakdown shared here. I had Cisplatin 8 years ago and I was told that although it won't be a walk in the park this will be much easier on my system! Ready to roll and get back to another new "Normal."
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Jan 2015 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2015 Posts: 37 | My thanks as well to everyone who posted on this topic. I just started on cetuximab last week so reading what you guys have to say has been helpful. Before starting on cetuximab I did some research with my friend Google and found some interesting info. If you also decide to look into it, you'll come across frequent mention of two clinical trials, the Bonner trial and the EXTREME trial. In both trials, cetuximab prolonged survival and had other quality of life benefits.  The Bonner trial was for patients with locoregional advanced HNSCC and measured effectiveness of cetuximab when given with radiation. There's plenty of articles on it, you can find them by googling "cetuximab" and "Bonner" or read this one: http://www.cancer.gov/clinicaltrials/results/summary/2010/head-neck-cetuximab0604The EXTREME trial differed from the Bonner trial in two respects. Instead of patients with locoregional advanced HNSCC, it was performed with patients having recurrent and/or metastatic HNSCC, and instead of measuring efficacy in conjunction with radiation, it measured efficacy when used in conjunction with platinum-based chemo. You can find plenty more info by googling "cetuximab" and "extreme"; here's a recap of it on cancer.gov: http://www.cancer.gov/clinicaltrials/results/summary/2007/cetuximab-head-neck0607Hopefully this won't apply to anyone here, but cetuximab is/was primarily used for colorectal cancer. Happily, it was found to also work on HNSCC. When researching cetuximab, you'll come across plenty of articles on colorectal cancer, so you can hopefully disregard that info.
Andrew 4x survivor 1998 - SCC of larynx ...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP 2002 - lung cancer, wedge resection 2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated ...chemo (carboplatin, taxol), dc'd due to neuropathy 2015 - SCC of palate ...Feb-April IMRT (46 x 70 Gy) ...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks 2016 - metastases to mediastinum, lungs, spleen, pancreas ...Aug-? pembrolizumab q 3 wks
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Andrew, In reading your post one thing resonated with me. I was told that this drug would benefit my quality of life from a side effect standpoint. If it's doing the job then who would want to disagree with that type of thinking! The majority of us go through plenty during our journey anyway!
Thank you for sharing your research.
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Andrew, these are old Trials/studies. The Bonner trial does state that the outcome for patients treated with radiation and Erbitux was better than for those just treated with radiation. It also states that the outcome for patients treated with radiation and Erbitux was still not as good as for those treated with the standard radiation and Cisplatin/Carboplatin. I don't want to rain on your good news about Erbitux. I'm sure someone with more knowledge than me will come along shortly and post links to more up to date trials. Hope all goes well for your treatments . Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2015 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2015 Posts: 37 | Tammy, I merely noted Bonner and EXTREME since they are landmark trials and I wanted to provide background info for anyone who may not have been familiar with them. (I imagine a lot of people here are already aware of them but they had not yet been mentioned in this thread.)
Unfortunately, it is true that cetuximab w/radiation is not as effective as standard CRT (it was not the intent of the Bonner trial to compare them.)
I may be completely wrong about this, but it is my impression that cetuximab is regarded as the best alternative for those patients in whom a more intense treatment of platinum-based chemo is not the best option. It also seems, as I understand it, to be regarded as the best option for those who have already undergone one of the standard platinum chemo txs.
Please correct me, someone/anyone, if I am wrong about that. I will have to search this site for previous discussions of cetuximab to further educate myself. You guys who have been there, done that are a wonderful source of knowledge, as well as inspiration and hope. Thanks for all you do.
And Tammy, thanks for the best wishes. I'm also wishing the continued best for you and your husband and family.
Andrew 4x survivor 1998 - SCC of larynx ...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP 2002 - lung cancer, wedge resection 2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated ...chemo (carboplatin, taxol), dc'd due to neuropathy 2015 - SCC of palate ...Feb-April IMRT (46 x 70 Gy) ...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks 2016 - metastases to mediastinum, lungs, spleen, pancreas ...Aug-? pembrolizumab q 3 wks
| | | | 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 | Here is a 2012 article from MSKCC to the editors of The Journal of Clinical Oncology about Erbitux replacing Cisplatin, outside clinical trials, that may be of interest for further reading. The RTOG 1016 trial testing the efficacy of Erbitux vs Cisplatin is still on going, I believe, and not completed yet. There were quite a few discussions on this blog regarding Erbitux a few years ago. http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Thanks Paul. I had you in mind as being the more knowledgable person re the trials and Erbitux. Hope all is well with you, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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