| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I'm starting a new thread on Erbitux & HPV since I caved in too easily to the guesswork of other posters in my earlier thread. I had concluded that I was just in the unlucky 5% that Erbitux does not work for. My MO disagreed today. At my visit with my Medical Oncologist today at the Lombardi Cancer Center (a CCC)at Georgetown Hospital, we had an extensive discussion on the new and disturbing evidence that using Erbitux alone leads to recurrence more often than cisplatin or carboplatin for HPV tumors in Stage 3 or 4 with lymph node involvement. He said there are studies due to come out soon from Europe and Chicago that will document this. Based on the analysis of the CCC's patients records as well as discussions with other MOs in Chicago and other treatment centers, he has discontinued administering Erbitux to any of his head and neck cancer patients with HPV and lymph node involvement. It's the majority of patients, not just 5%, that are having recurrences after Erbitux alone treatment. We discussed how the all the info in 2007 (Bonner) indicated Erbitux was made for HPV treatment, yet the clinical data is not supporting that hope. He was sorry that the information available now was not available then when I decided to gamble on Erbitux. He is unwilling to risk his patients' health waiting for the Erbitux clinical trial results to be done. He pointed out the studies that show the best results such as Extreme were those where the patients did not receive Erbitux alone but in conjunction with platinum based chemotherapy. Now this is just one medical oncologist's opinion, but he keeps up with the literature and networks. He has found no difference between carboplatin and cisplatin in results so I will do my carboplatin infusion tomorrow. I will follow up with him on getting specifics so I can post any articles or studies (in addition to the one study from the OCF news that triggered my first thread) when they are published. Remember it was also a big surprise when Erbitux turned out not to work in 40% of colorectal cancer patients. 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Well, that's absolutely terrifying. Please update when you have additional data.
Last edited by Maria; 09-28-2012 02:05 PM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | 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 | Charm,
Thanks for updating such an important topic. He you discuss the 3 vs weekly bag method of Cis by chance?
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: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David He only mentioned that he saw no reason to even use Cisplatin when carboplatin worked just as well. I did not follow up with a hypothetical: well if you did use cisplatin but I see him in two weeks (next week he's at a conference with some other chemo guys to discuss the bad news about Erbitux)I will ask him. 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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Charm, I'm curious...did he say which hospital, which MO in Chicago? As you know, Vince is being treated by one of the top MO's at U of C, where they use both cisplatin & cetuximab, along with a taxol, 5FU, hydrea & Everolimus (trial). Scans today, results next week...we'll get our first look at how affective the mix was. Ana
Last edited by AnaD; 09-28-2012 07:35 PM.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Sep 2012 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2012 Posts: 35 | Charm- Thank you so much for this information. Just this past Tuesday, I submitted the paperwork stating that I would join the trial between Erbitux and Cisplatin; i plan on talking about this in depth with my docs before I start Anything, and I am guessing/hoping this information will perhaps enlighten them about this. Again, Thank You.
Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+ Chemo/Rad 10/08/12; 3 big doses cisplatin Updated 10/16 refusing Cisplatin; due to side effects Considering Carboplatin; discussing with doctors. Corp. Trainer- South New Jersey Life is What Happens When You're Busy Making Other Plans. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Ana No, he didn't and now he's off so it will be a couple of weeks before I see him. Bear in mind that his comments (and mine) are dealing with getting ONLY Erbitux as chemo with no platinum. Vince is getting platinum also so it's not the same scary concerns. Erbitux will probably end up proving to be fine as a secondary booster but IMO it can't carry the big boy job done by platinum. Charm
Last edited by Charm2017; 09-29-2012 05:25 AM. Reason: typos
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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Lyn It can't hurt to ask them what actual evidence they have that Erbitux as a single agent chemotherapy is as effective as platinum based ones for HPV positive tumors. Don't let them confuse the issue with the Extreme trial which showed that Erbitux has great promise as an "add-on" or booster to platinum chemo. That's not the same as working solo. Also you may have to remind them gently that the Bonner study did not even take HPV into account at all. Charm
Last edited by Charm2017; 09-29-2012 06:19 AM. Reason: typos
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: 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 | I sure wish they would all decide what to do with the Cis vs the Carbo. I mean 6 1/2 years ago I was told by my MO at Moffitt(after I suffered permanent hearing loss) that "If I had known sooner I would have switched you to Carbo because it's just as effective as Cis but without the nasty side effects." Still can't get that statement out of my mind.
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: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David I hear you loud and clear. My MO is equally puzzled. I think the discussion in one thread is the best but saddest answer: unlike Erbitux, there is no big money to be made by doing extensive clinical studies so as to sell more of an incredibly expensive drug like Erbitux instead of plain old relatively inexpensive carboplatin. One reason I like my CCC is that they are always on the cutting edge, as shown by the recent OCF news feed on their growing little tumors of patients to try out multiple drugs. They also are part of the NIH experimental TIL study that was my fallback position. I'm off to my carboplatin infusion in an hour since they are confident enough to use carbo instead of cis, again based on actual patient results Charm
Last edited by Charm2017; 09-29-2012 06:32 AM. Reason: toned it down
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
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