So I'm 3 weeks past surgery. They removed the tumor and removed 1/3 of my tongue. The doctors say I'm recovering very well. They also said the my pathology tests reveal I'm at an intermediate risk with my microscopic nerves in my mouth. I'm still very new to this and don't know the proper way to explain it. I was told radiation is a must but chemo is a heavy suggestion. It would be up to me but the doctors say it would add the extra punch to radiation. It's funny that it will also add the extra punch side effect wise. There is also an option for a clinical trial with a lower toxic dose of chemo called Erbatux. But it's a randomized clinical trial so I'm not guaranteed the lower dose, I'm just guaranteed radiation as the standardized treatment. I do t know what to decide. My family wants me to just do the heavy chemo to make sure everything is taken care of. I'm nervous about it all. The pending pain that will come, the thought of recurrence. Everything. I'm very grateful to have very supportive family members who have been taking care of me during this time. Is anyone familiar with erbatux? Should I go ahead and take the heavier chemo? It's so much.

I understand how daunting it is facing treatment choices. Its so much to consider! Unfortunately the only people qualified to help you with this decision are your physicians and family. None of us here come from a medical background with years of schooling and treating patients. Im very sorry but we just arent qualified to give much input with this decision.

Many here have had Erbitux, aka Cetuximab. They have reported skin irritations and rashes as their chief complaint. Smaller weekly doses of chemo (no matter what type) seem to be much easier to tolerate than getting it every 3 weeks.

I think it would help you to read both here and on the main OCF site. By educating yourself about your illness and all the treatment options, it might help make this decision easier. The link below will help you with page after page of important info.

TREATMENTS...main OCF pages

Best wishes!

Hi,

Like virtually all of us here, we are not trained oncologists or ENTs, so we have to rely on the experts. First think you can do is make sure you trust your doctors 200%. That you can control. If you have full faith in your doctors then you need to trust them and take their advice. If you get different opinions, it does make things more difficult. In our case, it seems the recommendation is rads and chemo.

My own experience was fairly easy. I trusted my doctors, the tumor board agreed, so rads and chemo was an easy decision. I do know they both felt pretty strongly to be aggressive and do the most you can to kill it first time around. And that fit my personality to throw as much nukes at it as possible while not killing ME.

Plus, I've not had one day where I second guessed what was done. Even if there was recurrence, I know there was nothing more or different that was done that would have been any better.

Good luck!