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.