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.