Hi Everyone:

I am in my 3rd week of chemo/radiation after they removed approx 1/3 of my tongue and reconstructed it from arm tissue. My surgeon was unable to gain clear margins, and I was told that there was still a "microscopic" amount of cancer persent.

I am currently getting 5 days pwe week, and get a large dose of Cisplatin every 3rd week.

I discussed a drug called Erbitux with my doctor who said that it was not a proven remedy.

My question (and I would certainly appreciate any and all input) is simply this: what other treatment options do I have after 6 weeks of radiation and 3 doses of Cisplatin? I am interested in the most aggressive treatment as I just turned 40 and, other than oral cancer, am in good health, and ought to be able to "handle" more treatment.

Thank you in advance for your advice/sharing.

Mike
Cincinnati, Ohio

Your docs have chosen an aggressive and proven treatment plan for you. Many of the bigger institutions are adding Erbitux to the mix that you are getting. Monoclonal antibodies like Erbitux, while not designed to kill the cancer, do prevent the cells from replicating. This allows the other treatments like chemo and rad to do their work in a very efective manner. It is an FDA approved drug for head and neck cancer, but it is not used as a monotherapy (by itself). I wish you a fast an uneventful trip through treatments. Things will seem pretty easy till about week three.... that's where everyone starts hitting the wall. But in your case you will be halfway there at that point in time, and you can start counting down instead of up as you track your remaining days in treatment.

Brian:

Thank you for your site and reply. I am in week three and my throat and tongue are feeling the effects of radiation: my tongue burns and my throat feels like it is shrinking and I am having difficulty swallowing.

As far as Erbitux, I was aware that it was approved by the FDA for Head and Neck cancer. From looking at other people's profiles on this site it appears that some are indeed receving it with their chemo/rad. When I asked my oncologist about it, he said there were no studies wherein Erbitux was used after surgery, and therefore it was not an option for me.

I am not certain if that means (a) he won't perscribe it, or, (b) there is some legal/ethical impediment. I suspect that it's the former, which leads to my next question: How do I go about getting it added? I am being treated at the Barret Cancer Center at the University of Cincinnati (which I thought was a major CCC).

I would appreciate any advice on this issue as I would like to avail myself of all options.

Thanks again.

Mike
Cincinnati, Ohio

Mike -- I had a lengthy discussion with my medical oncologist about Erbitux vs. Cisplatin, as well as a long discussion with the chief oncological pharmacist, who happens to be a family friend.

Both can be effective treatments, and their usage depends upon institutional choice and personal preference. Erbitux does not have the track record yet to indicate whether or not it is superior to a Cisplatin/Radiation treatment protocol. Some studies suggest that it may be more effective for recurrence. My cancer center prefers to use Cisplatin for treatment during the primary regimen, reserving Erbitux for recurrence, where possible.

Other things can dictate one over the other. Some patients react badly to Cisplatin, but not Erbitux. Erbitux has less of an effect on the white blood cell count, but has other side effects, such as the rash, which some find more or less objectionable.

The studies on Erbitux at this point are promising, but by no means dispositive, which can cause many places to shy away from it in primary treatment, particularly when Cisplatin/IMRT studies are increasingly positive as studies begin to include more current patient populations.

One is no more aggressive than the other, in the true sense of the term.

I am 3 weeks out from having aggressive IMRT/Cisplatin treatment, and am clinically free of disease at this point. Good luck with the rest of your treatment protocol.

Hi Mike

I had Erbitux with my IMRT treatments AFTER surgery. I hope this information helps!

Kevin

I had Cisplatin and IMRT x35 last year. I just had a neck dissection last week for mets to a jugular lymph node. They weren't able to get clear margins because the cancer had invaded down to my carotid artery, so now I'm facing more radiation (localized to the area of concern in my lower neck). I haven't started yet (have to give the surgery a couple more weeks to heal) but I'm told I will be starting on Erbitux as well. My MO and RO say it's being used more for recurrence events and they believe it's promising. My RO specifically said he's seen a lot of good reports especcially over the last 12 months which indicate Erbitux an effective tool in combination with other therapies (chemo/rad).

We were told that Erbitux would probably be one option if Barry's cancer were to recur -- and his cancerous tonsil had been resected (that is, removed surgically). That's at Johns Hopkins, have to assume they know what they're doing! (Eribitux was not approved yet when my husband was diagnosed). They are now adding Erbitux to the primary platinoid/radiation treatment in a number of patients, some of these are post-surgery as well. It depends on the case...

Gail

Platinum based chemo and monoclonal antibodies cannot be compared to each other. One can be used as a mono therapy, the other not, one has cancer killing properties, and the other prevents cell replication but does not kill the cancer cells. They are definitely complimentary therapies, and when used together optimize the outcome. http://www.oralcancerfoundation.org/treatment/targeted_therapies.htm Just as some chemo makes the cancer cell more susceptible to radiation, targeted therapies hold growth and replication rates down so that other chemo and radiation therapies can do their jobs. The most successful treatments are often "cocktails" of a combination of elements to produce the optimum end result.