Hello everyone!! Hope you are enjoying your day. My sister starts radiation tomorrow. Yay!! The dr's want her to do radiation and Erbitux. She isn't sure weather she do it or not. She has read the possible side effect of cardiac arrest and is wondering if the extra 3% non reacurrance rate is worth it. The dr's want to be aggressive because of her age but we were thinking if this was to aggressive. Any info from anyone would be helpful. She is meeting with the dr's with her questions about it also.

Hi Susan,

I had Erbitux as part of my treatment and the only side effect I really suffered from it was the 'acne-like rash' that is very common. I think all chemotherapy drugs have some pretty dire side effects, but for me, hitting Cancer with everything I can throw at it is absolutely worth the risk, even if its only a 3% difference.

Oh, and the acne was eventually controlled with oral antibiotics.

- Margaret

Susan

I had just been told by a cardiologist that my calcium coronary scan showed major blockage but my echo-cardiogram stress test showed full function and I had zero heart problems or complications from Erbitux. The worst side effect for me was that it intensified my radiation dermatitis so the "rash" ended up just having all skin peel off.
I would take Erbitux all over again if I had the choice but I would take it in combination with carboplatin if I had a "do-over". My opinion is that your sister should definitely do some chemo along with the Radiation even she passes on Erbitux.
Charm

I really hate statistics!

If that 3% recurrance does happen.....then the Erbitux alone will not be enough to help her. Oral cancer is cured only by radiation (with or without chemo) or surgery. Chemo alone will not cure it. Most patients have been given their lifetime max radiation and cant have it again. Only a handful of members (like Charm) have been able to do radiation twice.

I am quite sensitive to Erbitux and and ended up in the ER after just getting a portion of the first infusion. Turned red, fell+ blacked out and foamed at the mouth. It felt like I had a ton of bricks on my chest. I did not have a prior heart condition whatsoever. This was a severe immune reaction, which is fortunately quite rare.

If they do the first infusion slowly and watch the patient carefully, then they can catch such a rare reaction before it becomes a problem.

Having said this I fully agree with the above posters that it is a good idea to combine radiation with some form of chemo, be that an antibody, like Erbitux or the platinum containing older chemo.

M

For what it's worth, my RO warned me that if I had spent any major time outside hiking in Southern states, including Georgia, Tennesse, North Carolina and Arkansas and had ever been bitten by a seed tick, then I would have had the same reaction as Markus. According to him, the bite from seed ticks causes your body to generate antibodies that then react violently with Erbitux. These "seed ticks" are very small and only found in the South not the Northeast. You can google Eribitux and seed ticks to see the newspaper stories which all ran in 2008 and then I guess it wasn't news anymore. Apparently they can test you for these IgE antibodies, although my RO never did.
Charm

I'm basically doing the same thing. Some trial with the IMRT and cetuximab. I'll resist the urge to get on a large soapbox, just a small one. Drug companies are required to put all "reactions" in the inserts, even if they are unlikely to be related to the drug and may be related to the patient's underlying condition. If you ask me (I realize nobody did), this is not really related to the drug. The rash and the uncommon, unpredictable anaphylactic reaction are the main side effects, and compared to other chemo drugs, make it one of the easier drugs to get. I probably will get a loading dose in a week or so and start radiation the week after. Please keep us posted on your sister's progress. Sounds like she's doing great!!

Thanks so much for your response. My sister had her first Erbitux infusion today. After about an hour conversation with her medical oncologist and radiation oncologist. She was extremly nervous through the whole process but took to the medicine very well.

Charm- thanks so much for the info. It is very good for us to know since we do have a lot of family we visit down south. You would never think of that.

Tsherid- so glad to hear you are getting treatment so fast. My sister had obsticles to conquer with insurance. That's why it took so long inbetween surgery and radiation. Thanks so much for the well wishes and please keep me updated on your progress also. My sister is trying to do this without a PEG. So fingers crossed.

Again everyone thanks so much for the imput and experiences. I was so glad to hear from people who have taken this drug. =)

Even though Erbitux is FDA approved it is not the recommended chemo for our cancer. Erbitux is used on patients that are not suitable for Cisplatin, like hearing impaired or kidney damaged patients, etc. There is a study that will be/is using Erbitux along with IMRT on HPV+ patients only, not HPV- patients.

Thanks for the info David. It seems she may of had a reaction to the medicine last night and rushed to the ER. She developed a severe headache. She will be going to her dr's later on today and I would assume a decision to continue or not would be made.