Met with Oncologist and Radiologist at the first CCC this week.
In total agreement on treatment with the Oncologist and our ENT surgeon is on board, too. He wants to use Erbitux once a week before radiation. Six week in total. We can live with that. The radiologist wants to use IMRT, not just on the right side where the tonsil cancer was removed, but also on the left side. That threw us both, as the ENT said he felt with clean pathology results, only the one side needed radiation. Pet scan before surgery clean, except tonsil, and all pathology clean except right tonsil. So frustrating I just want to scream.

Thursday we go for the second opinion at The Siteman Cancer Center. We are very curious how they will approach the radiation. Because our ENT was with Siteman for 12 years, he knows they will suggest the Erbitux, but not sure about the other.

We are planning on beginning treatments at one of the CCC next week after deciding on the place and course of treatment. Does anyone know if the suggestion of radiating both sides is even necessary? That does not leave us many options down the road. But, this one Dr wants no chance of having to go down this road again! Thoughts, please?

Nancy

There could be involvement bilaterally, due to the highly lymphatic area, and musculature of the tonsil into the BOT, that can spread to both sides, more so with BOT near midlline. Most tonsils cancers are on the left side, but can be right ipsilateral or bilateral. The tumor is large at T3, and that usually has higher rate of metastases, lymph nodes involvement, but see N0, but could be microscopic, and undetectable now. I wouldn't want to go through treatment twice, I actually did. Your first shot is the best shot.

Is this a trial with Erbitux? It's really not the current recommended first time treatment, outside clinical trials. I would want to add some other chemo, in addition, like Taxotere. Cisplatin was recommended, in addition, but read something from MSKCC with disappointing findings with this combination, but there are other findings noting a higher response rate. Chemo will add 8-22% better response to treatment, depending on type.

I had bilateral IMRT 70 Gy with T1N2bM0 disease. They might do lesser to the left side, and cervical neck.

Good luck.

At the tumor meeting the Erbitux was discussed and chosen as drug of first choice for Jim. Even with the tumor so large, nothing else was affected. The surgeon even cut a deeper margin looking for cells elsewhere. Because of age and very good health, this is what was proposed. Of course, we have not had our second opinion at Siteman. I have to believe our surgeon when he says it was a clean cut and removel. The pathology looks good with no evidense of spread. Our hope is that with radiation and Erbitux, we will get rid of any micrscopic cells remaining. Am I being naive?

Nancy

Not really, sometimes that's what you have to do is put the trust and faith in your doctors, and get a 2nd opinion lol. They know better than me. I know a few that had Erbitux alone, stage 4 tonsil, and are doing fine, but that was a few years years ago, maybe a year and a half, and I don't see as many, other than for metatastic, and recurrent cancer, who did Cisplatin as first line treatment that failed, are using Erbitux. and I guess most are waiting the outcome of a comparative trials with Cisplatin vs Erbitux, and possible treatment reduction with HPV. There was a recent article, one of many, about HPV sensitivty with radiation in oral cancer news in the opening page.

Hopefully they will one day have a biomarker that tests the the EGFR like colon cancer since they found 40 percent of the population had a KRAS mutation to make Erbitux ineffective on them, so they test before administrating. There is no such test for HNC, but heard Erbitux may not work in 5% HNC patients. I believe a gene fir HNC was found recently that may show who these targeted EGFR inhibitors may work on, but that's not coming soon.

You are a funny guy, Paul! Thanks for the advise and support! I do have all of the trust and faith in our ENT Surgeon. He found the cancer and took quick action. Jim had seen several doctors before the ENT who kept telling him it was just acid reflux. This guy took one look and broke the news that the right tonsil had cancer. With all of that behind us, the treatment is next and we want to get rid of this beast. Jim is up for the challenge and would prefer the most aggressive treatment available. He is getting things in order and I will make sure he is taken care of.

Thanks again, Paul!

Sorry you have to join the group, but here you have a circle of friends who understand what you are going through. It helps immeasurably that Jim is up for the challenge. The patient's determination to lick the beast will make the long journey quite a bit smoother. Hoping for the very best for the two of you.

Thanks, Gloria!

Hi Nancy

Erbitux IS indicated for first line treatment of head and neck cancer in combination with radiation.

the FDA approved this indication some years ago and the National Comprehensive Cancer Network (NCCN) guidelines also list Erbitux as a potential treatment. The NCCN DO suggest that cisplatin is preferred and this is because there is more experience with this agent.

http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

I am unsure if the link above will work but it is intended to send you to the relevant page of the guidelines.

If it doesn't, search for NCCN guidelines, register (costs nothing), make sure you are on the home page, find "NCCN guidelines" tab at the top and hover on "NCCN guidelines for treatment of cancer by site", locate head and neck cancer and then click on the PDF. Once you have the document downloaded, scroll past the title page and find hyperlink to the table of contents (top right hand corner)on the next page. Locate cancer of the oropharynx (ORPH-1), then "see treatment of primary ...ORPH-3" . In the footnote section "principles of systemic therapy CHEM-A" will take you to the list of chemo drugs that can be used.

I am sure there is an easier way than this, and the guidelines are somewhere on this forum but I can never find them. Maybe someone can make this a bit easier???

there are many reasons why a doctor will choose Erbitux over cisplatin and you need to discuss this with your doctor so that you are fully aware of their reasoning.

Good luck

We had that discussion about the two drugs with our ENT and the first oncologist. They felt that in my husband's case, it was the drug of choice. Far fewer side effects and has proven to be highly successful with their patients. We will meet with the second opinion on Thursday. If it is the same, that is what we will do. Right now our ENT surgeon and the radiologist are in disagreement over the radiation treatments. They are having a talk and getting back to us. It would be nice if everyone was on the same page!

Thanks so much for the link! I keep on researching and reaching out for help and support. I really appreciate it!

Nancy

[quote=klo]I am sure there is an easier way than this, and the guidelines are somewhere on this forum but I can never find them. Maybe someone can make this a bit easier???[/quote]
The link to the NCCN page on the main OCF site is here, but be advised that the guidelines on that page are from 2011. I don't know how much they change from year to year.