| Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | My mother had a CT Scan done and on Monday we will see the doctor for results. If the scan doesn't show any good results then the doctor said he will stop the Cisplatin. He said the next option would be Erbitux. A while back someone posted Erbitux saved their life. Im wondering about the side effects. My mother has been through a lot and has lost so much weight already. I'm sure its no walk in the park but just wondering if its worse than Cisplatin. Thanks Heidi
Last edited by Brian Hill; 12-11-2014 04:50 PM. Reason: correct spelling for future searches
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: 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 | The chemo you are talking about is called Erbitux. Its also known as cetuximab. One of the side effects is a rash. from what I understand the bigger the rash, the better the Erbitux is working. 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks Christine It's called Erbitux thanks for the correction. As you can see I'm still learning. I'm sure a rash wont feel to good but it's probably better to deal with than what she has been through. I don't think my mom can handle a 3rd round of the Cisplatin. the 2nd one really took a toll on her. Happy Holidays Heidi
Last edited by sweetpe1; 12-11-2014 10:08 PM.
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | I had Erbitux concurrent with my IMRT treatments. No major side effects except for the rash. IV Benadrill was my friend for that. Good Luck Heidi! 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Oct 2014 Posts: 5 Member | Member Joined: Oct 2014 Posts: 5 | I had Erbitux also and am in my 2nd month of recovery (from the side effects) from both the Chemo and the radiation. One of the side effects has been "Chemo Brain", a condition similar to CRS (can't remember stuff). My wife noticed my fogginess about the 3rd week of my 7 week treatments and I still have it; along with some others. My dr.'s are telling me that it may take 4-6 months to get back to where I was before. I am hopeful, but I am not completely sold that I will ever be the same as I was before; not in that time frame. | | | | Joined: Nov 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2014 Posts: 27 | yes I'm going thru treatment with Erbitux now. I had 1 treatment have rash on side of my face but not real bad. Doing Erbitux before surgery they say it helps for after. After 1 treatment I noticed 90% of pain is gone and the tumor seems to went down some,I have 2 more treatments left then surgery. I go the next 3 Mondays I'll try to let you know how things turned out
just found out I have squamous cell cancer 11/11/14 stage 4 lower right jaw bone 11/21/14 stage 2 lymph node 11/21/14 surgery 12/30/14 16 hour. Removed lower right jaw. All lymph nodes from right side of neck,and checked some on left side. The margins all came back clear. Radiation and chemo next
| | | | 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 | There are two rare, but severe, side effects with Erbitux and that is an allergic reaction, and heart attack, which mostly occur the first or 2nd infusion in a small percentage of people. Benadryl is given to help with the allergic reaction, and staff monitor you closely, and you are to report anything out of the ordinary. The other which is expected, and sign of the Erbitux working is the rash, which is managed by antibiotics. They say for about 5% of head and neck cancer patients this drug doesn't work due to the Kras gene mutation, but there is no assay test to find this out unlike for colorectal cancer, which blood test is given before starting to see if one is a candidate or not. http://www.erbitux.com/index.aspx
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: Oct 2014 Posts: 12 Member | Member Joined: Oct 2014 Posts: 12 | My husband has had 5 Erbitux infusions and 12 IMRT Radiation treatments. The worst of the rash/acne was after the first 2-3 infusions and has calmed down now. The Dr gave him a gel to help dry the acne and that helped a lot. He now has dry skin that we use a moisturizer for. His appetite has gone down and we are using the Gtube for supplemental feelings.
Cheri-43 year old caregiver 51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit ENT Appt 10-9-14 Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node 1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx 1st Radiology Oncologist appt 10-30-14 PET Scan 10-27-14 1st weekly Erbitux chemo 11-12-14 PEG tube surgery 11-13-14 1st of 30 IMRT Radiation Treatments 66 gy 11-25-14 | | | | Joined: Nov 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2014 Posts: 27 | after my 2nd treatment of Erbitux and chemo,I had I guess what you can say a very sour belly.Didnt have fever this time,but it pretty much put me on the couch the next day. I do have a rash dry lips but hardly any pain,looks like things are shrinking. Seems like the day of and after treatment I have a hard time eating,but have been able to eat that night and feel lots better
just found out I have squamous cell cancer 11/11/14 stage 4 lower right jaw bone 11/21/14 stage 2 lymph node 11/21/14 surgery 12/30/14 16 hour. Removed lower right jaw. All lymph nodes from right side of neck,and checked some on left side. The margins all came back clear. Radiation and chemo next
| | | | Joined: Mar 2014 Posts: 9 Member | Member Joined: Mar 2014 Posts: 9 | I am currently being treated with Cetuximab/ Erbitux after on and off complicated treatment regimen (due to bone necrosis in jaw, likely caused by bevacizumab/Avastin--another targeted therapy drug)to treat stage IV mets to lungs, which was primary'd from throat cancer back in 2012. My most recent treatment soup has been carboplatin(orig cisplatin--carbo is less harsh), taxotere, and the Erbitux, which was added early last November. I took a break from all treatment after finishing the latest four treatment, 21-day cycle, carbo/tax regimen. Most recent CT-Scans have shown very positive results to mets in lungs. This came at a price, the side-effects were hard on me. From everything I've read though, and I read everything I can get access to, the side-effects are worth putting up with. Of course, that is barring allergic reaction, unbearable side-effects, etc,. Some people continue with Cetuximab/ Erbitux for years as "maintenance therapy". I had minor rash on chest. My face and hands were affected the worst. At the end of about 4 or 5-weeks on Cetuximab my face appeared sunburnt, with skin flaking. Along the way I treated this with Uecerin cream. Hands dried so bad that I was wrapping bandaids around half my finger tips from tiny deep cuts that opened on their own, as well as various nicks and scrapes. I used Uecerin on hands also. I had really weird eye-tearing thing going on too. Phys Asst told me it wasn't pink eye, but it looked like it. My magnesium levels dropped very low throughout this experience and still are not right yet; they call this hypomagnesemia. I am taking over the counter supplement currently. There were few times the IV'd magnesium into me during chemo. I have had muscle and arthritic-like joint pain from this. No energy, malaise kind of lethargy too. Things can get dangerous if magnesium levels (as well as others) aren't kept in correct range. Yeah, that's my latest course of self-study, fluids and electrolytes. Ahhh, but I've said enough here, I'm not trying to hijack the thread. I thought I a little bit more first hand detail in answer to your question wouldn't hurt here. On Jan 20th I start "maintenance" regimen of Cetuximab/ Erbitux alone, which will be cut back to every other week at my request. If anyone wants Erbitux updates, check back with me. We'll know after a while whether or not it was the targeted therapy drug that shrunk, and in some cases flat out disappeared, my tumors. | | | | 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: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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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