ERBITUX (Cetuximab) has anyone been on it?

[butrflies]

Went for my first oncology visit today at U of Penn, the doc was great! He said that he could refer me to a oncologist closer to home (which I'll probably do) because he would put me on the standard folfox6 treatment unless I wanted to join the clinical trial they have going on right now at Penn which is folfox6 with erbitux added to it. Not thrilled about the side effects but wanted to see if any of you have had any experience with this drug combo?

Thanks
amy
stage 3c

[skier03]

Hi,

I had FOLFOX + Erbitux for 7 months when I was first diagnosed. At the time, Erbitux was just recently approved and not in clincal trials for first line treatment. But I had it anyway...

It is supposed to be one of the new "miracle drugs" for colon cancer, and there are many, many success stories with its use. My recommendation to anyone who has the option of Erbitux is to get it!!! It helped to shrink my tumor significantly prior to surgery, and I have heard of liver lesions disappearing, etc.

The major side effect is the skin rash that I'm sure you've heard about. It is unpleasant, but definitely bearable. Your skin may get red and extremely dry - I also had little white head looking things all over. But if you start using moisturizers and creams for the rash early on, it may not get so bad (I didn't know about these things until the side effects had occurred). Since Erbitux is being used more often, doctors have more recommendations about how to deal with the rash. Also, just so you know - it's not scientifically proven, but it is believed that the worse the rash is, the better the drug is working.

I say if you have the option to get Erbitux, do it! It helped save my life and many others. But you need to do what is best for you - so talk it over with your doctor again and consider all the options.

If you have more questions, I'm happy to help!

Good luck!

Skier03

[Hannah]

Hi Amy,

If you are willing and able, I would urge you to go on the clinical trial. We are in great need of clinical trial participants and there are so many "pluses" to being on a trial. Here are a few:

- you will NEVER get less than the standard of care you would get anyway
- you are helping current and future patients by finding out what the best treatments are
- the trial pays for the part of your treatment that is investigational (although insurance will still have to pay some of your costs)
- you are often followed more closely after a trial than if you didn't participate (for instance, you might get scans and bloodwork done more often because the trial wants to "study" you for a fairly long while afterwards)
- you will be informed in advance about exactly what you are getting yourself into
- you can drop out at any time for any reason

In addition to all of that, you also could benefit from the addition of Erbitux to the FOLFOX. As Skier03 said, Erbitux is a somewhat new drug and we are still learning about it - but what we know is very good so far!

And just to mention - thankfully, there is more research being done now about the rash/effectiveness connection. It is becoming fairly well-accepted in the medical community that people with good responses to Erbitux often have a really bad rash - and the worse it is, the better the response! That said, they are working towards some scientifically proven answers.

Hannah