Just a heads up on a recent OCF news article that supports my bias against Erbitux (it failed spectacularly to even slow down my cancer yet caused me more pain and bleeding and discomfort than the 95 GY of radiation I've had or the Carboplatin.) Apparently if you have HPV, your cancer does NOT overexpress EGFR as much as non HPV cancers. Since Erbitux only shuts down EGFR, it can end up just making radiaation dermatitis worse while leaving the cancer fine.
[quote]For example, HPV-positive cancers are driven by the expression of viral oncoproteins and are associated with lower epidermal growth factor receptor (EGFR) levels than are HPV-negative cancers.[17] This has potential implications with regard to cetuximab sensitivity in HPV-positive tumors. A retrospective study out of Memorial Sloan-Kettering recently suggested that HPV-positive patients treated with cetuximab plus radiation have worse outcomes than patients treated with cisplatin and radiation.[18] It is imperative that current and future studies address specific therapies for HPV-positive and HPV-negative cancers; such studies need to focus on tumor biology, treatment intensity, and curability, and they need to acknowledge the fact that patients with HPV-positive tumors tend to be young and otherwise healthy�with the result that failures in this setting can be catastrophic.[/quote]
BTW, failure of Erbitux leading to recurrence seems equally catastrophic to a patient who was old but otherwise healthy like myself.
Charm

Hi Charm,

Have you seen any articles on success rate for those of us who are young & HPV negative? At Sloan, and am a candidate to receive Erbitux with radiation starting in next 3-4 weeks.

Thanks,
Sally

Clearly I do not want to suggest anything that your doctors are not recommending. Given your very early staging you have that on your side, few of us get a T1N0 find here. Having said that, I am also not a huge Erbitux fan although I like that they have explored a less damaging treatment modality as an adjunct to radiation therapy. Given a ten year history of precancerous lesions, I would personally choose to tough out what has been the standard of care - rads with cisplatin (or carboplatin if you don't tolerate cisplatin well). This gives you a scorched earth policy, that has the highest opportunity to eradicate what might be the opportunity for "field cancerization" to be taking place. Had you not had so many years of precancerous lesions, I might think differently.

Please note. I am not a doctor, I do not know everything about your personal situation, and I may be basing this opinion on a lack of knowledge, experience, and more. But I think it is worth asking your doctors about, and then after hearing their opinions, making an informed decision about which way you should go. Erbitux has some unknowns associated with it, and disagreements within the medical community about when it should be the drug of choice and when not. Cisplatin is a completely known commodity having been used for a very long time.

Thanks Brian- I appreciate your thoughts. We meet with the MO next week and I'll look forward to understanding the thought process on drug selection here.
The tumor, while T1, had both island invasion & PNI. Like everyone on here- reoccurrence is my biggest fear. I know that now is my best shot to go at this thing with an upper hand.
Will keep you all posted.

Thank you.

Sally

Long Answer: I am so glad that Brian weighed in here as I am so biased against Erbitux that I cannot be objective in my advice. Plus I am not a doctor and am not licensed to practice medicine only law. Brian on the other hand can be objective and has given you excellent advice.
As to your question,the implication of the quote I posted is that HPV negative patients did better with Erbitux.
Now that you mentioned PNI, relying upon Erbitux alone seems rather risky to me. I did and my cancer did come back.
Meanwhile, many others here had cisplatin or carboplatin and their cancer did not come back. Simplistic, yes, non-probative, definitely, True nevertheless.
Some studies show good results with using BOTH a platinum based chemo like cisplatin or carboplatin and Erbitux.
When you talk with the MO, it could not hurt to ask if has considered the possibility that there could be a KRAS type gene issue for Erbitux for oral cancer (The KRAS gene encodes a small G protein on the EGFR pathway. Cetuximab or Erbitux and other EGFR inhibitors only work on tumors that are not mutated) Since 40% of all colo-rectal patients have this mutated gene, Erbitux literally cannot work for them
My MO is actually doing a clinical study to see if he can find a similar gene issue, perhaps not KRAS but one nonetheless, for head and neck cancer. He was stunned when Erbitux failed me so badly and is trying to understand why. Unfortunately, so far they have no test to see for whom Erbitux works, except after the fact when it's a little too late for the patient. After they found PNI in my recurrence, my MO switched me to carboplatin. so far, so good.
Why take a chance that you are part of the unlucky percentage that Erbitux does not work on?
Don't mean to scare you, but IMO this is a case of better safe than sorry.
Short Answer: Erbitux is like that little girl with the curl in the middle of her forehead: When it is good, it is very very good, and when it is bad, it is horrid.
Charm

Thank you for your responses.

The interesting/disturbing part circling in my mind now- is that both my surgeon and RO both said that the standard for a case such as mine is radiation- no chemo. But, the Erbitrux trial is on for post-operative patients- and that would be gravy, so I should go for it.

I know that there are no answers here as we are all individuals with unique histories, tumor traits, etc... But based on what you are saying - I am really looking forward to understanding from the MO why chemo (like Cisplastin) is not pushed along with radiation in a case like mine.

I will let you know how Weds goes.

Thanks again.

According to my RO, MO, and SO ... Tongue lesion treatment is surgery... And if they are concerned about aggressiveness or if it shows PNI (perineural invasion) and or a node with ECE - they give rads and chemo. The chemo they gave me was cisplatin, howeve they were considering offering me a trial (I believe it must have been erbitux) however I think the ECE may have nixed that - as they were concerned about spread and decided to go with tried and true, as opposed to a maybe... Since your cancer was confined to the one area and didnt have nide involvement you would be idea. Good luck weds!

In my husband's case, the Erbitux started reducing the one cancerous lymph node almost immediately - before the radiation had a chance to work (the RO noted the reduction and said - its not me, yet). There's clearly a lot that the researchers don't know!

Absolutely!

Its a balancing act Sallyanne. You need to be confident you have a treatment to wipe out the cancer and not have it come back. The idea is to do it with enough power to knock out the cancer but not so much power to cause you long term or unnecessary issues with side effects. With a stage I your doctors are probably thinking (or their protocol tells them) that radiation is enough, but when you are the patient, you might just want to make sure and feel more is better.

The trouble is, that "more" means more side effects from radiation (the cetuximab or chemo makes radiation work better therefore doing more damage to you and the cancer) as well as side effects from the cetuximab or cisplatin themselves.

The thinking is that cetuximab doesn't cause the same level of side effects as cisplatin, but so far no one knows if it is as effective as cisplatin either.

Alex had this dilemma when the docs recommended cetuximab reasoning it wouldn't give him as many toxicities. We rejected their recommendation, opting instead for proven efficacy over perceived safety. Like Charm, we were concerned that if the cetuximab failed, it would do so completely, and we were more prepared to deal with deafness, numbness, palsy and goodness knows what else than the alternative.

It sounds like your doctors think your condition would normally warrant radiation only and the addition of cetuximab is an added extra. So, even if it doesn't work, you are no worse off, except for a potential increase in side effects which one would hope would resolve in time.

Sally

Again, this may be TMI, but I just found this American College of Radiology criteria guidelines (from a link in the wonderful amazing OCF News Feed) that in all the charts lists Erbitux as the very last choice in chemo after surgery with a rating of 1 out of a possible 9. It concludes
[quote]There are no randomized data to support the routine use of cetuximab, a humanized monoclonal antibody to the epidermal growth factor receptor (EGFR) ligand binding domain, adjuvantly following resection for SCCHN. Therefore, the use of cetuximab in the postoperative setting should be limited to clinical trials. The combination of cetuximab and radiotherapy is currently being studied by the RTOG� (0920) for patients[/quote] ACR -adjuvant therapy
Can't hurt to ask your doctors what they think of these guidelines (print it out or send them the e link)
Charm

There are just so many great stories about the newest discoveries in the OCF news feed, I almost missed this one about Erbitux since it did not mention it in the title OCF - new therapies
[quote]Surprisingly negative results came from the phase III Radiation Therapy Oncology Group (RTOG) 0522 trial (N = 940), which showed no benefit to adding cetuximab to the radiation/cisplatin platform for front-line therapy of advanced head and neck squamous cell carcinoma....�RTOG 0522 was the study of the year in head and neck cancer. Unfortunately, it was flat-out negative,� Dr. Hayes noted....[/quote]
Conclusion: [quote]Even as a negative study, RTOG 0522 is practice-changing. �Many physicians have been treating with this regimen, assuming this study would be positive,� he said. �But we now have no data to support this.�[/quote]

Thank you so much for the education and very interesting replies.

My husband and I sat down with the MO yesterday. I cannot tell you how wonderful this woman was... She was about our age, also mother of a toddler, and was able to answer our questions very clearly and thoughtfully.

I asked her what she would do if she were in my shoes with this disease after reviewing my history, path reports, etc... She really took sometime to think about it. She said that while she may want to jump right to the Cisplatin- she wouldn't. She believes that the risks outweigh the reward right now for my case. I know that I may get a lot of opposing opinions here- but I saw in her eyes that she was being honest- she really took that moment to search her soul- and you could see it.

This was almost a two hour conversation. We went over and over it all.

So, I feel good in my heart that I a doing the right thing. I will do 33 sessions of radiation, and may or may not receive Erbitux as still do not know where my candidacy stands for the trial.

I am scared and nervous about the treatment(s)- but I do think that based on all of my factors- I have a great shot at beating this- and that is the good thought that will get me through.

Again- I cannot thank you all enough for your concern and incredible education!!

When I count my blessings at night- I count the folks on OCF twice!!

Good news - rads will be hard but you can get through it.

Sally

For what it is worth, I think you are doing EXACTLY the RIGHT thing here. With a T 1 tumor, zero lymph node involvement and zero spreading (based on your signature), Radiation should indeed do the trick. What is significant is that your MO is saying this, as many RO's feel it is the radiation which does the heavy lifting and they discount chemo. (My RO however urged me to get chemo also) For an MO to say chemo is probably not needed, she must be pretty confident in her prognosis. But I would still ask your RO and ENT.
Charm

Thanks Charm. That's in line with what the good docs have been saying. Your affirmation of the treatment adds to my comfort!!
Sally

Hello Charm. I must be having a "senior moment".Can you point me to the article you are referring to? Thanks, Linda

Linda

Years of writing advocacy legal briefs using selective quotes from myriad sources show up in my hopscotching around articles, studies, etc in my posts. I'm not sure which of these three sources you want but here goes
My first post excerpted the comments of a Dr. Jimeno from a Sat, Oct 15, 2011OCF news article :Locoregional recurrence of an HPV-positive squamous cell carcinoma of the head and neck that came from www.cancernetwork.com . Dr Jimeno cited two studies in support of his points One by Kumar B, Cordell KG, Lee JS, et al. EGFR, p16, HPV Titer, Bcl-xL and p53, sex, and smoking as indicators of response to therapy and survival in oropharyngeal cancer. J Clin Oncol. 2008;26:3128-37. The other by Koutcher L, Sherman E, Fury M, et al. Concurrent cisplatin and radiation versus cetuximab and radiation for locally advanced head-and-neck cancer. Int J Radiat Oncol Biol Phys. 2010 Oct 13. [Epub ahead of print]
Later in the thread, I excerpted a Tue, Oct 18, 2011 OCF news article (that one has a blue hyper link to it) to quote D. Neil Hayes, MD, MPH, of the University of North Carolina at Chapel Hill. He described efforts to position the epidermal growth factor receptor (EGFR) inhibitor cetuximab (Erbitux) in head and neck cancer treatment. The study he referenced was the phase�III Radiation Therapy Oncology Group (RTOG) 0522 trial .
Finally, I cut and pasted from American College of Radiology ACR Appropriateness Criteria� ADJUVANT THERAPY FOR RESECTED SQUAMOUS CELL CARCINOMA OF THE HEAD AND NECK
All three of these came to my attention thru the OCF News Feed. I recommend reading it daily. It's easy to add to Google news and other RSS readers or you can just go to the OCF News pages directly.
As I mentioned, many times the actual article is locked behind a "Pay Wall" so without OCF news, I would probably never know about so many important developments.
Hope this helps
Charm

Sally,
I would not think anyone would recommend chemo to you considering your case, except for the long history of precancerous lesions you present. It's unfortunate that there are no "do-overs" on this. I was not to have chemo until my lymph node, which was small, was found to have extracapsular extension (microscopic, but it seems to make no difference). The chemo was supposed to give you a small but significant chance of not having a recurrence--can't remember how much, but more than 10%. In my case it was my surgical oncologist who lobbied for the radiation and then the chemo being tacked on was standard after the lab finding. But if your MO is not recommending it, I guess that is what I would go with too.
Anne

I just learned this morning that I have not been randomized to receive the Erbitux. I am a little upset- but it's ok. Raddiation is the standard of care here- and I will still be able to keep the disease away!! (I just need to believe that as I begin my radiation!!)

Thanks again for all of your feedback.

Sally

Sally

Remember how comfortable you felt with your MO's opinion that radiation would work. On the bright side, on All Saints Day, let me give you some horror stories about Erbitux that you will not have to worry about.
what if your reaction to Erbitux was like mine? It would be very upsetting to watch all the skin flake away from your face and neck and not regrow to the point where you need gauze bandages to staunch the bleeding. Oh and those bandages need to be changed twice daily even though it's painful and pulls off even more skin.
Or if you had ever been hiking in a Southern state and had gotten bitten by a seed tick, your first Erbitux infusion could have triggered a massive allergic attack that required immediate medical intervention (did not happen to me, but to others here on OCF and well documented)
So maybe you were very lucky
Charm

I am bringing this post back up as the sentiment it expresses has been raised elsewhere by others which could potentially undermine the faith of an individual with an HPV+ve tumour in their doctor who has recommended Erbitux (cetuximab) as their treatment.

I think this topic requires a bit more discussion and a little less blind acceptance.

I finally got around to reading the article that Charm refers to in this post and discovered it was a panel of doctors discussing a case of a 46 year old male with a recurrent HPV+ve tumour.

http://oralcancernews.org/wp/locore...ous-cell-carcinoma-of-the-head-and-neck/

The reference to cetuximab was a discussion point and was not part of the patient's treatment.

The quote that started this post is a point made by Dr Jimeno in response to a question about whether or not HPV status changes treatment decisions. Dr Jimeno refers to the study done at Memorial Sloan-Kettering and makes the comment that Erbitux was found to be inferior to cisplatin in HPV+ve tumours.

Because this comment flew in the face of my previous reading, I went looking for the study and discovered it has some serious shortcomings.

1. It is a retrospective study which also appears to be observational. This is pretty much the weakest level of evidence you can get with the exception of a case study.
2. The cisplatin group had 125 patients and the cetuximab group had 49. Such a disparity screams a warning. The obvious first thought is the cetuximab group was likely to have been selected for that treatment because they already had health issues which would preclude them from usual treatment of cisplatin. This makes them generally a "sicker" group to start with.
3. The cetuximab group were older and had a decreased creatinine clearance. This is proof that there are indeed issues as outlined in point 2.

Now this doesn't sound like much but it is a very big deal. This tells someone who can read a trial (and some doctors can't) that the results are only useful to indicate future research topics and then the paper should be used to rest one's coffee cup on to avoid rings on the desk.

I was only able to access the abstract or summary of this trial so cannot get to the details, but the abstract doesn't even mention HPV+ve positive tumours.

The study can be found in: Int J Radiat Oncol Biol Phys. 2011 Nov 15;81(4):915-22. Epub 2010 Oct 13.

So here's my point (finally). I notice that there are a number of people who are now suggesting that cetuximab is not a good treatment for HPV+ve tumours and as far as I can tell, it is based on this one study that has been quoted over and over elsewhere. I have been unable to find any other studies that suggest this and in fact, have found the opposite. The original trial that put cetuximab on the map for oral cancer was the trial by Bonner et al. Whilst his group didn't look at HPV status, there were a large proportion of oropharyngeal cancers and one would assume a percentage of them were HPV+ve. The oropharyngeal group did well on cetuximab which suggests that this is a viable treament for HPV+ve tumours as well.

I think that a "logical leap" has been made that cetuximab targets EGFR so is more effective when EGFR is over-expressed. This is flawed reasoning. EGFR over-expression correlates with a poor response to treatment and it doesn't matter which one, as they are all less effective in this setting.

Does anyone know of any work that has been done to suggest cetuximab is inferior for HPV+ve tumours?

For the record, Alex and I also rejected cetuximab as a adjunct but mainly because of lack of data at the time and because, as Charm has already pointed out, when cetuximab fails it does so spectacularly well. As Alex was young and relatively fit at the time, we felt he could cope with the cisplatin toxicities and the preference was to go with the drug with the proven track record.

Erbitux is a thorny question. Klo is correct that the citations and reports I have posted do not resolve this issue. I hope that the new clinical trial mentioned in other threads will provide clearer answers. It's comforting that Dr. Gillison and OCF are involved in that trial.
Bear in mind, that I actually had Erbitux so it's not academic to me but personally evidentiary. I'm puzzled by any assertion that using a targeted therapy like Erbitux whose sole anti cancer action is blocking EGFR would somehow be effective in situations where the tumor does not express much EGFR and have not heard nor read of any doctor or medical facility as thinking so. To me, that is illogical
The shocking failure of Erbitux in a large percentage of colon cancer patients after being touted as a miracle drug there is also a cause of concern.
Last but hardly least for patients, the carboplatin side effects were a walk in the park compared to Erbitux.

I also note most of the comments about how less toxic and easy Erbitux is or that it even works, have not come from patients who actually had Erbitux. It is an assertion by its manufacturer so IMO, Erbitux is a gamble since there is no doubt that the platinum based drugs work on everyone despite their genetic makeup or EGFR expression.

Again, I admit my bias against Erbitux. I wish wholeheartedly that my misguided faith in Erbitux had been undermined by critical comments like I have posted. My MO was and is a wonderfully compassionate doctor who cared about me as a person and patient and truly thought, based on the hype of Erbitux, that it would be the best for me. His and my "Blind acceptance" of Erbitux's purported efficacy did not pan out well. Plus I was exceptionally healthy and had great creatine levels, I am so glad and thankful that my MO reviewed all the studies again but gave precedence to the evidence before his eyes and urged me to use carboplatin after my cancer bounced back from it's Erbitux.
If he had been stubborn and just stuck to the Erbitux bandwagon, it would have made my choices far more difficult.
So far, the tried and true platinum chemo seems to have worked for me
Charm

So my question for all of you is this. I had only Erbitux and Radiation for my BOT HPV16+ with one lymph node involved. I was not offered surgery (when asked if I should have had surgery 2/3 through treatment my ENT asked me "why would I".

I was not explained the difference between Erbitux and platinum based chemo (just told Erbitux was a good treatment) and when I asked later about it was told it was fine, though I had my concerns.

Now I'm not saying the doctors were bad....I could have been more proactive...but it hit me hard when I was dx and I had to travel 100 miles for tx and I had a wife and 5 kids at home and it just seemed everything was moving fast.

My last tx was January 2012. My first post PET / CT May 7th showed no sign of cancer in my tongue or lymph node, scope and finger exam looked good.

June 6 ENT and Onc. appt (two seperate) both did scope and finger exam and all looked good.

What can or should I do now? I have always been concerned about only having Erbitux and no surgery....please be frank, I have a wife and five kids (ages 2,5,8,11 & 13). 49 years old and in good health before the c dx.

Best,

Tim

Tim

I would not do anything if I were you. Why? Because you had the classic signs of Erbitux really working on your cancer: the acne rash. Your description of it in the posts matches what I have read to be really good prognosis. It sounds to me like your doctors have been giving you good advice.
I did not have the acne rash. That is a bad sign.
Obviously Erbitux works for some people. Nobody doubts that.
You should be feeling better and better. When Erbitux works, it really is a miracle drug.
Also , I was the most proactive guy possible, calling on old friends who were oncologists, double checking my CCC doctors and I made the exact same decision you did so I don't think that's a factor.
Last but not least, you do not want Surgery if you can avoid it. Your ENT is right about that.
there is no reason to think that you will not be like DavidCPA, one and done.
If you look at my old posts you will see that I am one of the "frankest" posters here and never sugar coat it. While it's easy for me to say: don't worry, I know that it's hard (plus when you figure out how not to worry, you will have to share the secret with me). Enjoy those kids now and for a long time
Charm

Hi Tim, I reread your post a few times, because it didn't sound like the Tim I've come to know the last few months. You have always been so positive and upbeat, that I had to verify it was really you. That being said, you have the right to FREAK OUT...We've all done it, I think you are just doing yours later in the game. Most of us freaked out at diagnosis; then dusted ourselves off and did what we had to do.

You dove headfirst into the treatment and recovery and probably didn't give yourself freak out time until now. Don't second guess your treatment. You did everything right and like Charm said, it looks like it worked for you. that's the main thing.

So, dust yourself off and know that you are now a survivor and there's nothing you can do to change the past. You've made a remarkable recovery in such a short time and I think a lot of that was your attitude and your faith.... I know you still have your faith, you just need to get that attitude back !

You have also been such a big help to so many others already who are behind us in treatment. Keep up the good work.

Stay strong and keep moving forward, one step at a time.

Hi Tim

I am not sure what grade of tumour you had but erbitux plus radiation is a legitimate treatment for some types - particularly oro-pharyngeal.

There was a big trial (Bonner et al 2006 published in NEJM)of over 400 people that showed cetuximab was effective in advanced head and neck cancer (grade III-IV). The majority (63%)had oropharyngeal cancers. As we know that HPV tends to turn up in oropharyngeal cancer in about 70% of cases, this would suggest that Erbitux is effective in HPV+ve tumours.

There is no good evidence to suggest that HPV+ve tumours respond any differently to HPV-ve ones when Erbitux is used.

So you can relax, there is nothing here that should make you nervous.

Tim6003

So it's unanimous that we think you will do just fine.
Hey, when Klo and I agree completely on something, you can take it to the bank. With your Stage III, Base of Tongue SCC HPV16+ with one lymph node involved and relative youth of 49, you were a far better candidate for Erbitux than I at 60 with Stage IV and two lymph nodes and HPV 16+. Again, the white pimples and acne rash you described when you introduced yourself here on OCF really seal the deal that your TX worked. I have not read or heard anyone dispute that the more extreme the pimples and acne rash, the better the result for the patient.
(As you have probably figured out, there is another Tim who posts here so I will use the full Tim6003 from now on.)
It's good to hear from a success story.
Charm

Tim6003,
my husband also had the acneform rash (first cycle, even). Since I had read the Bonner study, I was happy to see it, and kept telling my husband that it was a lovely rash even as I was coating it with Aquaphor. He is doing very well 15 months post treatment. The fact that you have NED at six months post TX is also very good news. Best wishes for your continued recovery!
Maria

Hi, Tim
it's also perfectly normal to be panicky AND angry, so no apologies needed. You noted:

[quote]If I had to give them a score on "egagement of the patient in the decision making process" it would be lower[/quote]

I think this is fairly common, and is also a difficult issue to deal with. My husband's MO presented the treatment plan the tumor board arrived at, and the level of evidence for recommending it. He did not say, "or we could do platinum based therapy", but if we had objected to the cetuximab we certainly would have had the discussion. My guess is that the level of patient engagement is at least partially dependent on the patient/caregiver: walking in with a notebook full of stuff and a page and a half of questions on top of that will indicate a desire for the 'long' answer on the part of the patient/caregiver team. Not everyone wants the long answer.

I agree Maria. Well put.

In hindsight I mentioned I could have done a better job of probing ...

Best,

Tim

Hi Charm...

btw ...I like frank and blunt ...so don't change that about your posts...hope you saw my updated post ...still learning to navigate here on the OCF boards.

Thank you,

Tim6003

Tim, I knew you would appreciate Charm's views, and those of this board.

Not a fan of Erbitux myself, but if they are going to administer it then make sure they've done the gene testing on you to see if you're one of the ones that will benefit from it. Article here:
http://www.webmd.com/colorectal-cancer/news/20080602/gene-testing-predicts-response-to-erbitux

They can predict the 2/3's of patients it can possibly benefit. So if we are grading drugs, Erbitux is only going to possibly work on 66% of people, that's a D unless we are grading on a curve

To muddy the waters a bit check the thread below this one - someone new is talking also about erbitux and it's lack of effect on his mother... Have a good one.

with respect Eric, they are talking about colon cancer in this article. This article cannot be applied to oral cancer as the EGFR expression and possibly the mechanism for mutation is different.

Let us not get confused here. We are talking about using chemicals (whether that be a cytotoxic agent such as cisplatin or a monoclonal antibody such as Erbitux) to sensitise and assist radiation. In terms of treatment, this is NOT chemotherapy, this is chemoradiation.

Chemotherapy is the name given to the use of a combination of two or three chemical agents intended to halt, shrink or destroy tumours and is generally not terribly successful as a curative regimen for oral cancer when used on its own.

Going back to a point that Charm made recently about mutations and resistance, - single agents generally cannot withstand cancer's ability to mutate and render the agent ineffective within a matter of weeks if not days.

We know that Erbitux plus radiotherapy is better than radiotherapy alone. We also know that cisplatin plus radiotherapy is better than radiotherapy alone. When comparing the numbers indirectly across the major trials (which is very unscientific and risky) the magnitude of effect is about the same.

What we don't know is whether Erbitux plus radiation is better than cisplatin plus radiation. This trial has not yet been done and unfortunately only a trial which compares the two directly will give us the answer. The trial that will give us this answer is currently recruiting which means that for now, we do not know the answer and won't until 2015.

Karen
PS this a general clarification post. I didn't mean to post a reply to Charm - I thought I was just adding to the bottom of the thread. Sorry.

With respect Karen a K-ras mutation happens in 40% of colorectal patients so they routinely do the gene testing. K-ras mutations happen in around 5% of SCCHN patients so our wonderful health officials deem it "unnecessary".

I think it would be completely necessary if you are one of those 5% that it's not going to work on...wouldn't you? Now Karen I don't know your background or experience, but I've actually been in a closed meeting at the U.S. National Cancer Institute with Brian and Dr. Maura Gillison as she presented to the National Institute of Health for one of these studies. It's a numbers game to them, not an individual case (and by rights it has to be) but I would want to know.

I would also say that there are few people outside the medical community that has done more research into the treatment protocols and effects of oral cancer treatments then I have, I'm "very" familiar with what these drugs do, but thank you for the refresher. I'll remember this the next time I'm lecturing at the University of Washington, which has the #6 rated cancer care center in the U.S.

PS: I am NOT a Dr! I do have the same size ego generally and I have been known to play a Dr on the Internet and as an adolescent to get members of the opposite sex to remove their clothes for me.


Sorry I forgot my disclaimer

Now we are having fun
As the comments on the NCI page about the Bonner trial make clear, the bottom line remains that Erbitux is a gamble.
[quote]Finally, Posner and Wirth wrote, "oncologists should keep in mind that all studies of platinum-based chemoradiotherapy have shown greater improvement in patients than [this trial] found with cetuximab.... At present, for patients who can tolerate it, chemoradiotherapy with cisplatin remains the standard of care." Dansky Ullmann added that a trial that recently completed accrual is testing whether cetuximab might improve outcome when added to this current standard for these patients[/quote]
It's just speculation that Erbitux may be better.
NCI on Erbitux clinical trial In fairness, the full comments favor Karen's position more than mine on HPV, but it also spells out the fatal flaw in citing Bonner for anything to do with HPV
[quote]The prognostic importance of HPV in head and neck cancer was not known when the study was designed, and the investigators did not test tumor samples for HPV.
[/quote] All the Bonner trial showed was that Erbitux was better than nothing (okay, that Erbitux plus radiation was better than radiation with no chemotherapy at all). Oh and it does support �[quote]it is possible that the acneiform rash is a biomarker of an immunological response that is conducive for optimal outcome.�[/quote]
So Bonner "proves" nothing about Eribitux and HPV.
Charm

Charm wrote:

[quote]So Bonner "proves" nothing about Eribitux and HPV. [/quote]

Correct. The results of the study provide a hypothesis to be tested based on the subgroup retrospective analysis, presented as a forest plot in the five year follow-up. My husband, a scientist, read the Bonner articles and the Lancet commentaries on them prior to starting treatment.

oh I love the direction this discussion is taking...

Hmmmm.....well now I have a headache

Well, all I can say is I am an "aggressive" guy by nature and I asked (maybe he would have done it anyway) my ENT to give me a finger exam and scope every 30 days, he agreed. I see my oncologist every 30 days (but not sure how much longer he will agree to that). I am and plan on being my best advocate.

My hope is the study that comes out in 2015 says Erbitux is a "wonder drug" ...lol We shall see.

I also say my prayers nightly for my board friends and myself that none of us have to go thru this more than once, and if any do I just pray all the harder for them!

Best,

Tim6003
CANCER FREE AND PLAN ON STAYING THAT WAY!!!!!!

To share a funny note; My lovely wife told me at the beginning of my dx / treatments that "if you die, I will kill you" ...it took a moment for her to realize what she said, plus that "deer in the headlight look I gave her" probably helped her figure it out.

We haven't started in on the various radiation protocols; that will really give you a headache!

Actually, probably a lot less conflicting opinions on radiation protocols than Erbitux. This thread IMO does not need much more discussion especially with the additions the posts of Erbitux working successfully for Tim & Maria's husband to balance out the concerns I've raised with my experience of Erbitux not working.
At this point, we will need to wait until the results of the new clinical trial are in to see what the facts really are. Right now, all we know is that Erbitux does not work for a significant percentage of oral cancer patients. We don't know the exact mechanism or reason as we do about why Erbitux does not work for many colon cancer patients although there are many possible candidates. HPV remains the big question.
IMO, there is no harm in a patient asking their oncologist why he/she is recommending Erbitux only instead of cisplatin or carboplatin and what is Plan B if no acne rash develops.
One would hope the oncologist is as well informed as Maria and her husband on the ambiguity of Erbitux.
Charm