My husband was scheduled for his 2nd round of Chemo on Wednesday June 22, 2011 - he had already told all doctors he could not tolerate another dose. While we were talking he mentioned that he had been at a meeting the night before and a drug rep told him about Erbitux - he told us the major side effects (but no risks) but we would talk more and start something the next week. I thought he said "herbal" and that it was new. I told many friends and talked about it on facebook. On Thursday when the doctor came to see John I asked what the name was...I laughed when he told me and told him I thought he said "herbal". It was never mention again until my husband called me at 6:59pm Friday night (6/24/2011)and said the ONC came by and since John felt so good and was in the hosptial it would be a good time to try it. The only free time I had to look it up was late Thursday (the first night I left his side because my back hurt too bad to sleep in the chair by his bed). I saw the less the 1 in 1000 and told a friend with our luck John would be that one. I knew he had mentioned it but we were to decide next week what our alternatives were other than Cistplatin. I do not know what my husband was told. My daughter talked to him from 8:30-9:00 and she thought he would start something Saturday so she talked him into staying until Sunday and not to try to come home Saturday. At 10:59pm on 6/24/2011 I get a call saying there was a change in my husbands condition. His reaction was in minutes and he is not the only one this has happened to.

My husband was a non-smoker and had never smoked but he did use Listerine a few times a day and swished for a long time - he used the large bottle and went through one in about 2 weeks. He was a moderate drinker.

What a heart rending story. A true tragedy. While the Erbitux did not kill me, it did not kill my cancer tumor either.
I see you are from Georgia. My understanding is that anyone from Georgia and other Southern states that have seed ticks should NOT have Erbitux since if you have ever been bitten by a seed tick, then your body has developed antibodies that cause a potentially fatal reaction to Erbitux.
My MO quizzed me about what Southern States I had lived in or hiked in ever. Some posters here had a terrible reaction to Erbitux and they were all from Southern states with seed ticks.
No words can comfort you in this situation.
Charm

This situation drives me nuts. Why do doctors insist on rushing headlong into treatments when a little time allows for more education and fewer errors?

I asked J's MO if there was time to get a second opinion and he said we had about 2 weeks to get one. J didn't have the 2nd opinion consultations because they conflicted with the oral surgery appt. and then the doc at the CCC was called away. The RO was pushing hard for radiation to start and teeth needed to come out prior to rads. We asked the MO if he had complete trust in the pathologist's DX and he said yes. So, we went forward. We found out two weeks into treatment that he doesn't have cancer. J went from having cancer to not having cancer to now having an increased lifetime risk of cancer because he's had radiation TX. In addition, he's had major surgery, oral surgery, and targeted immunotherapy (Erbitux) because the pathologist was not up on the latest SCC HN information and misdiagnosed a benign condition. I found tons of information and studies on this very DX factor the same day we got the 2nd opinion path report. There was no excuse for the pathologist to be oblivious.

J's situation pales in comparison to what happened to John. I can forgive honest mistakes. But, professional lack of awareness and ineptitude is unconscionable when there is plenty of information out there about this stuff. If a patient or patient's caregiver can find and understand information written in layman's terms about a disease or medication just by looking it up on the web, there is no logical reason for a doctor or any other medical professional to be ignorant. Actually, it would be stupidity, not ignorance.

J has been complaining of chest pains for about a month (which means he's probably had them a lot longer.) He's seeing his GP next week. (Remember, this is the same man who waited 9 months to get the lymph node addressed.) I'm in my happy place about the GP appt.--nothing more I can say or do. I'm hoping he gets a referral to a dermatologist for his Erbitux rash, too. Nope, he hasn't taken care of that one yet, either. My happy place is going to be a padded room if things don't change soon.

I'm sorry if I've gone tangential on everyone. But, damn. I am bone-tired of all this nonsense with stupid mistakes. It is all so unnecessary.

It just blows my mind how something like this could happen! If anything good can come out of this, and the right people can be made aware, it will be because of people like John's wife, who in the midst of their own grief will speak up and take action.

Charm - Thanks for posting that about the South. I'm going to Google seed ticks and see if I have any in my back yard.

Sandy - I hope that someday, if not already, your J. will realize how valuable a caregiver you are for him. Is there any chance that the chest pains are in any way related to the Erbitux? (I sure hope not.)

@ Anne-Marie: Damn. You know I started thinking the same thing after reading John's wife's post! I'm going to tell J. Maybe that will light a fire under his procrastinating posterior.

And, the post Charm made...!!!!!! With all the time J's spent in tick country in the South, it's relevant to him. And, it's probably relevant to many other patients who don't live in the South. I'm almost positive there was not a word mentioned to J about ticks before therapy.

There should be a major news article and/or a professional paper written to help prevent what happened to John from happening again. It won't eliminate all Erbitux fatalities. But, it could prevent many of them, I'm sure. Also, it could save people from suffering through therapy when the odds are that Erbitux won't work for them. Erbitux shouldn't be made to look like a poison with no redeeming value. To the contrary, it's been used to make miracles. The article should just drive the point home that Erbitux needs to be handled more precisely and with a great deal of care. A spotlight should be shown on all of the known problems. The article should educate the medical community and the general public. It is never prudent to create a panic. However, it is in the interest of public safety to keep events such as John's fatal reaction from being marginalized.

Sorry, I haven't quite reached the bottom of my anger about this one. Anger's a good thing. There's nothing like anger to galvanize a person into getting some changes made.

http://www.bloomberg.com/apps/news?pid=newsarchive&sid=adSTJaU0zP_c

http://oralcancernews.org/wp/hypersensitivity-reactions-to-Erbitux-caused-by-tick-bites/

So we have had a tragedy that has made us all aware of something that usually only creates a SMALL anaphylactic reaction. Even today there is no commercially available test to know if you might have an antibody that would cause this in you before you get this drug as a treatment. So researching the FDA adverse event section, and looking at protocol, this has been understood since about 2008, and patients are supposed to be closely monitored at the first treatment for signs of anaphylactic shock. There are drugs which can arrest a negative event if someone is going into AS. The same ones that are used for peanut allergic reactions and other allergic responses that have been around awhile. I guess my question is; Is there someone monitoring CLOSELY the patient in the first 12 hours with an epi pen readily available? If not, why not?

A note to Charm about what EGFR inhibitors are supposed to do. The trend in cancer treatments is towards targeted therapies, meaning that they want to find ways which are not systemically toxic to interrupt some portion of a cells functions or life cycle. This drug is supposed to stop the signaling of the protein messenger that tells the cell to replicate, not kill the cell (why it is not a mono-therapy in treatment). Cancer cells are already replicating at at least 5 times the rate of normal cells, and that makes it hard for radiation, regular chemo etc. to keep up with them and actually get ahead. If you can slow their replication down, you can give the conventional therapies a foot up to killing more of them in a shorter period of time. But kill the cells, isn't part of what it was designed to do. There are many new targeted therapies in the pipeline, for instance ones that interfere with the tumors cells ability to create life sustaining blood flow to themselves (angiogenesis) are a really promising group in solid tumor treatment.

Brian

Thanks for the newest study link, My seed tick studies cites were older. while he was good about the ticks, I wished my RO had explained that Erbitux would not kill my cancer tumor. I had it as my only chemo along with the radiation. Hindsight is always better so I wish I had carboplatin with the Erbitux.
Again, I believe that they will discover a similar mechanism to the KRAS gene effect upon Erbitux that they have found for colon cancer, i.e., Erbitux just does not inhibit the growth of head and neck cancer cells nor slow down their growth and replication if the patient has a certain type of gene variation. As you know, it is now required to test colon cancer patients for KRAS gene variation before using Erbitux. Currently there is zero requirement to test for anything (tick antibodies, gene variations, etc) before giving Erbitux to oral cancer patients.
The Erbitux did do a fantastic job of stopping my face and neck skin from growing back from the radiation damage. I should have been suspicious when I never had the acne rash.
But I should not complain since while worthless for me, Erbitux was not fatal.
Charm

Just to give you a little confidence in the lack of conventional chemo in you plan, I had radiation and neck dissection only. No Chemo�. and here I still am. In my day going through this (back when Moby Dick was a minnow) IMRT didn't exist, and the studies which showed the additional survival benefits of chemo/rad had not been completed. They had however determined that fractionated radiation treatments were the winning path in radiation.

The adverse event report show frequent enough minor anaphalactic reactions, which are controlled, and stops the treatments immediately. Given that this is widely reported, and that there is no test (it isn't just tick antibodies that can cause this) to predict it, my assumption is that this initial monitoring protocol is not unknown. But I haven't read about it much in the literature, and fatalities are very rare. I will be curious on Tuesday when the docs I get to interact with, get my questions about this at their institutions.

I was monitored very closely during my first dose of Erbitux. I began to have a mild reaction, alerted the nurse immediately and the infusion was stopped. I was given Benadryl and no further reactions. So yes, 3 years ago this was the protocol.