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