PLEASE!!!! Anyone considering using Erbitux make sure your doctor is aware or the TRUE risks. It can be a good drug but the protocol is NOT the same as the protocol with chemo such as Cisplatin. My dear husband was not told of any risks and when I researched I read what every doctor is telling me now - less than 1 in 1000. Read ALL the info that is right there on their sites. With other medicines or if you have had radiation or chemo it can (and does) cause instant death as in the case of my husband a few days ago. If that number was not a lie (and it is - read it and weep)they would have had him on a heart monitor and not have started his first dose at 10:30PM on a Friday night. PLEASE do not take this and think there are no risks!!! It is a good drug and can help but it also can be dangerous.

PLEASE!!!! I am not bashing the drug or the manufacturer and I accepted that if there was 1 in 1000 someone had to be that one and John drew the short straw. My fight at first was to make the figure "2" deaths reported so heart monitors will be used but now that I read more about it the risks are so much higher. Hospital protocol MUST be changed - I was told they were following protocol for chemo - and they did. But it is NOT the same for Erbitux!!!! I am not angry at the doctors or anyone - this is a horror story and I do not want this to happen to anyone - if I can save one person from this post then my husband did not die in vain and I can be at peace. When you are stunned from being diagnosed and going through daily hell you tend to do everything the doctors say - we did. Our ONC met a drug rep at a meeting the night before and the next day he told us about it and all the side effects (no risks) and then 2 days later used it and in minutes my husband was gone. PLEASE do not believe there are no risks - the risk for sudden death from heart, lung or allergic reaction is great. About 90% of people receiving Erbitux have some kind of reaction (no, not all fatal) but protocol says how careful to be and what the risks are.

I sincerely apologize if this is the wrong place to discuss this but he was only diagnosed in May and is dead in less than 2 months. He was not even in pain yet - not even a sore throat. The Cisplatin made him vomit 10-20 times a day and he had lost 30 pounds in 19 days so he did feel like crap and like he was going to die but cancer did not kill him and Erbitux should not have killed him if used properly and was closely monitored - he was in the hospital for hydration and to start a feeding pump (the PEG tube was put in early so when he did get in pain it would be there). He was not on pain meds - just formula feeding because of vomiting and Zofran for nausea. They decided to go ahead and start the Erbitux since he was in the hospital and relaxed and finaly after 21 days straight not vomiting - now I wished we had it done at the Infusion Center where he would have been monitored and they had life saving tools available.

My condolences on the loss of your husband. I hope you are able to find some comfort here.

My deepest sympathy goes out to you on the loss of your husband, John. What a terrible shock. The things you both went through are horrifying. I am so sorry.

Thank you for sharing your husband's experience with Erbitux. My husband had Erbitux. The evening of his first infusion, he had severe flu-like symptoms. I was really worried until the symptoms subsided a little later that night. The rash appeared within a week of starting the treatment. He hasn't had an infusion since March 1st but is still having problems with the rash.

Because my husband's on-going rash problems are unusual, I looked up the Erbitux information site. You are right. For all the good that Erbitux does for some people, it is very dangerous if not appropriately managed. I was shocked that I failed to educate myself about the risks. Unfortunately, the pamphlet/brochure he received prior to/during treatment wasn't as cautionary as the website or I would have been more alert and would have asked questions and researched it more extensively.

My husband's Erbitux treatement was billed at $4,640 per infusion. He was going to have 8 infusions. With all the researchers and resources dedicated to developing these types of therapies, it is understandable that they will be very expensive. But, there is no excuse for downplaying or not mentioning the risks in order to make a sale. In your husband's case, whoever failed to heed the warnings should be tarred and feathered. It is time for educational materials that are given to patients to be soley and thoroughly educational. Drug companies need to treat doctors less as customers and more as partners in care. There is no room for advertisement and promotion when someone is receiving treatment. The responsibility for correct and complete information about medications rests on the shoulders of the drug companies and their reps.

Thank you for the big dose of awareness. Again, I am sorry for your loss.

Sandy

I am so very sorry for your loss. I cannot imagine the shock and pain you must be feeling. And yet, in your compassion for others, you've thought to make us aware of how we must be so careful and how important it is for us all to research and inform ourselves, and always, always question. I hope that in the days to come, those close to you will be there to hold you and help ease your pain. And, know that we are here for you, too.

@ Anne-Marie: You are wise and compassionate and I have learned volumes from you in the short time I've been here. Thank you. You are a gift.

xoxox
Sandy

I'm sorry to hear about the loss of your husband, and how it happened is terrible. My heart goes out to you. Thank you for your words of warning. I'm sure others here will consider them when going in For treatment. Take care.

Thank you all so much for responding. I am here alone right now and still in total shock. In a span of 24 days without as much as a sore throat my husband is dead. I was on my way to pay $6000 for a private autopsy when I finally got someone to step in and help. They are doing the autopsy today and with that proof I can make sure this does not happen. For myself I know now at least a few people know of this danger and it may help so my heart is a little better. I have never been on these type forums and didn't know what to do but I needed to tell someone. Just looking now and seeing someone else knows is a weight off of me. Thank you all so much!!!

We are here with you, - and grateful, too,- for what you are continuing to do in bringing awareness to others out of this sad turn of events. I'm very sure that John is with you in spirit and helping you through these difficult days. Please stay close and let us know whenever you can how you are doing.

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.

OMG!!! He did say there was a side effect (don't remember exactly what)that was found only in North or South Carolina - they thought maybe something in the soil so whatever it was we didn't have to worry about that side effect.
We live on 4 acres deep in the woods and have a lot of ticks - my guess is if they noted from the autopsy any bites he had at least 5-6 on him (they made bad reactions and he kept the spots for months). I myself have had six this year and they itch for months. My daughter has had about 10 on her - 5 in one day. They are really bad this year!! He had one since chemo and radiation that he left on for a while so it would suck the chemo and kill it. He was curious if it would suck his blood and die.

OMG!!!! I feel so bad for you and J. I cannot believe the stuff I am finding out. I am not stupid but I have never had to deal with any medical stuff before and really didn;t pay attention. I haer things about the drugs companies (especially cancer) and pay offs etc. I am finding so much stuff that blows my mind. Actually, the insider trading deal that Martha Stewart went to prison for insider trading was stocks that owned Erbitux!!! The scientist that invented Erbitux discovered the government was going to issue a negative report so he called his daughter to sell the stocks. She told Martha Stewart. Everyone lied but they finally admitted it. I always thought it was harsh but I did not understand. But then, who is the government was paid off to tell him about the report??? I am so sorry for what you are going through...Laura

The fact is that it works really well in some people, but not in all. The report and those facts are widely known now. Researchers are trying to find out why in some there is no impact and it others it increases survival. Bottom line this is the nature of these new therapies. It started with an amazing drug idea called Irressa for lung cancer - it was financial flop, but in 10% of the people that got it, it worked 100% of the time. There is so much we do not know about this new field of genomics, proteomics, and molecular targeted therapies. This really is the future, but we are still in the learning curve. Not a bad drug, but like all drugs, it has its limitations, and no drug - not even ones held up as paradigm changing, like the polio vaccine which eradicated polio from our country and saved millions of lives, helped everyone, and some people it even hurt. But overall it was an amazing breakthrough vaccine.

As it turns out Martha should not have sold her stock, ImClone was bought buy a bigger pharma firm Pfizer, and BMS and another big firm in Europe came in as marketing partners for Erbitux, and she would have made a lot of money.

At the end of the day, no drug is 100% safe in 100% of people it is given to, not even aspirin�...

Looking for info on Erbitux I have mostly found people begging for it and cannot get it because of the expense. A lot of insurance companies refuse to pay for it and Medicaid/Medicare will not pay for it. I run a non-profit organization (with no pay) and my husband was starting a new job in June (when he lost his job he went to school to get his CDL License). So - when this hit us in early May we had not insurance - we had just got word that he would get SSI for June on July 27 - no medicaid because we have a second home (which was up for sale). (Actually signed a contract at 5:30 on Friday which is another nightmare now). Doctors have not refused us anything and besides Meds I have only spent $290 total. We have had a Pet Scan, about 15 of his 35 radiation treatments, $1000's of dollars of medicines and things given to us. We were blessed with all of this. The only way John could have received this is from the sales rep he met on Tuesday night that told him about it. It would not have been approved for a charity case if someone was paying for it. Several things were denied to us and some less costly meds were used because we could not pay. Cisplatin is used regularly for this type of cancer but the ONC explained about it not having a patent and was the most affordable is why we would use it. I have read a lot of good things about Erbitux and It can work miracles. I do not find a lot of bad things but the things I do find ALL say John should not have had it or should have been on a simple heart monitor. Every time I have been in the hospital (even having a baby)I have had a heart monitor and the pulse thing they clip on your finger. I am not angry at the ONC he cared for John and knew our situation - we even had the plan for some things for him to just show up at the emergency room so he could get certain meds. I do believe that he took a sales rep at his word and the sales rep offered it for him to try (just like all the other meds given to us) and he saw it as a chance for John. I believe he read the package insert but nothing else. I blame the sales person for not telling him of possible dangers. The hospital said they followed protocol for chemo and they did. This is not chemo and the protocol is not the same. Shame on somebody!!!! My only goal here is to make sure this does not happen - I KNOW John is not the only one. If I can save one life then my husband died a hero - if he can save more then I can believe his death had a purpose. My husband cared so much for people that he would have given his life if it meant he would save many. This is not Rocket Science - this is arrogance, indifference and for the hospital pure stupidity!!! I AM VERY angry that no one at the hospital cared and I had to fight even to be told what time he died. I am ignorant and thought an autopsy was automatic and was at the funeral home to pay and he would have been cremated less than 24 hours after he died when I asked if he knew how John died and would he be doing the autopsy. He told me how to ask for one and was denied because John had cancer. Having NO money I begged and borrowed $6000 for the private autopsy before I got the local congressman to intervene. I cannot believe they were not even slightly curious why he had died when although he had cancer he had not even had a sore throat yet. I can just see what they would list as couse of death......Oh, he died!

Hi Laura,
It just gets worse and worse the deeper you dig into these things. I had no idea about the stock situation involving Erbitux. Wow! I'm beginning to think that corruption is the rule rather than the exception.

I will never blindly trust anyone in the medical or dental profession again. In addition to all the problems we had with J's DX and physicians, his first oral surgeon tried to pad his bill by $1000 claiming J's teeth were impacted when they were not. I had them give me the billing codes which are universal so I could find out what our dental insurance was going to pay. When he had his 2nd opinion from USC dental school, the billing codes changed from what the 1st oral surgeon had listed. Also, USC gave me a preliminary quote over the phone based on the billing codes J's 1st oral surgeon gave me. When J came home from the USC consultation, the price quoted was much lower than their preliminary quote. I immediately knew what was going on. I couldn't believe that anyone would be such a parasite as to cheat a cancer patient. They knew that we had been struggling with all the hospital, prescription, and other medical bills despite having insurance. How cruel and immoral of them. My faith in people in medical and dental professions has been completely destroyed.

I can only imagine how severely all that you have been through has destroyed your trust and peace of mind. It is like a nightmare that doesn't end. You look for answers and you find out information that is worse than anything for which you could prepare. I am so sorry that you are going through this horrendous tragedy that would have never happened if people had only taken their responsibilities seriously.

Take care, Laura. You are in my thoughts constantly. I pray that justice is served on whoever is responsible for the unnecessary death of your husband.

Sandy

Erbitux isn't the problem. The people who are behind it's misuse are the problem. Kind of like, "guns don't kill people. People kill people."

It is true that no drug is 100% safe. There are bound to be casualties. We all accept that fact when we take medication, have vaccinations, and receive treatments in order to treat or prevent disease. However, when there is a known risk factor or protocol that is carelessly overlooked and causes permanent disability or death, it is completely unacceptable.

ps. Martha certainly deserved to pay a "dishonesty tax" because of her dirty dealings.

So sorry to hear of your loss of John and my heart goes out to you. Such a shock and understandably you should be angry and casting about for the reasons why this happened.

A few facts to help you move through this dreadful situation you are in. You may be able to do a couple of things, when you feel you are able, to help others and make sure John remains a hero.

The prescribing information or package insert that the doctor would have read contains a warning in a big black box about sudden death from the infusion. A "black box warning" as it is referred to is the highest level of warning in the US and your doctor would have known about it. However, your doctor was trying to save your husband so the benefit in his mind would have outweighed the risk.

Eli-Lilly owns Imclone but Erbitux is manufactured and distributed by BMS in the US. You need to ensure that the doctor reports the death to BMS so they can update the information (and maybe strengthen their warning). You can also do it yourself if you are up to it.

Your husband died suddenly and unexpectedly in hospital. In Australia, any sudden or unexpected death in hospital invokes an autopsy and I thought the same was true in the US (check this as I am unsure). The fact they didn't jump to it may be because they are assuming his death was a forseeable event and associated with the cancer. An autopsy will help clarify things.

All cancer treatments, including Erbitux, cisplatin and radiation can cause death. However, oral cancer is a guaranteed death sentence without treatment so the risk is thought to be worth it.

The oncologists are used to working with the risks and do everything they can to minimise them. Maybe they sometimes slip a bit and assume that everyone knows that death is a risk of treatment but do not expect anyone to reject treatment because of it. To mention it at a time when people are working their way through the shock of diagnosis may be an added unecessary stress (IMO a wrong decision but others may appreciate this). I imagine that having the Erbitux in hospital on the ward would have been assumed to be "monitored", although I am suprised they started an infusion at 10.30 at night when reactions would not have been as easily observed with the ward being dark, junior doctors on duty and everyone asleep.

The Martha Stewart insider trading scandal relates to your regulatory body (the FDA) refusing to approve Erbitux initially. This is not unusual and was no biggie from a healthcare perspective. The scandal was around the investors trying to dump their stock before news hit the papers and destroy the share values. At the time, ImClone only had one product and it was a disaster (short term) for them and probably a disappointment for the doctors who had been trialling it but there was never any suggestion that Erbitux was not a good drug -the FDA just needed more proof. The FDA went on to approve Erbitux a couple of years later when further clinical trials answered their questions.

I must also state that I have worked for a pharmaceutical company for nearly 21 years and am very proud to do so.

Again, so, so sorry you are going through this and we are all here for you. Writing of your experience is one step towards helping others and hopefully, one day you will be able to take comfort in knowing you have saved others from going through what you are experiencing today.

I totally agree with you on everything you said - even if we had started something the next week I know without a doubt we would have chosen Erbitux. Besides the fact that "beggers can't be choosers" we had a wonderful, caring, loving doctor that we trusted (and still trust). I agree that Erbitux is a wonderful drug and I know people have to die to save other people (just like in war) and my husband would have done that. I have no problem with the drug. Everyone agrees you should have a heart monitor and an epipen (the room was equipped with the heart paddles). If Dr "F" had been told the protocol he would have done that. He learned of the drug on Tuesday night and used it on Friday night at 10:00PM with no ONC or Cardiologist on site and in full confidence. Maybe he should have read up on it more but I believe that if the protocol was made clear this would not have happened. Dr "F" has treated 1000's of patients with chemo and follows chemo protocol and it is basically the same for most chemo. I believe he "assumed" this was the same way. OK - he did not ask but on the same hand they did not tell him. All I am saying is "If it is not "standard protocol" that needs to be very clear - on the package insert, from the salesmans mouth and on the website. Then if it is not and someone dies then "Shame on the ONC for not changing protocol or the nurse who followed protocol and not doctors orders"!!!!

I agree about Martha - I don't know a thing about stocks or insider trading and even thought it was harsh when she went to prison but I am glad she got screwed because someone in our USA government was evil enough to tell about the negative report. Why would someone do that???? $$$$$$$$
It hurts my heart to finally believe what all my political friends have said for years.

Thank you so much for understanding what I am trying to say. I am a very caring and giving person and I do not hold grudges and I forgive mistakes. I run a non-profit working with orphans in Kazakhstan (for 9 years) with is more than a full time job for no pay. I just hate that my husband died because of something so simple

I too thought an autopsy was required and just assumed it was done. I was asked to have his body removed 2 hours after his death (didn't even know who to call as all this just started and we were not NEAR that point of planning). Maybe I thought the funeral home did the autopsy or was in shock - just thought they did that. He was at the funeral home by 9:00 - appx 12 hours after he died. On the way to pay for the cremation someone mentioned an autopsy so I asked when we arrived. Figured all that out - was denied so I begged until I had $6000 to pay for the private autopsy. The ONLY reason I wanted it was for reporting purposes. I was told they would not report this to the Erbitux people or really reported at all to any cancer society. I felt the numbers would never change if it was not reported. I would have never read all this stuff if they had just did it and determined which risk it was that killed him, so the numbers being reported are true. OK, so I am a little wierd - I thought it was my moral duty to do as asked and report this. I follow directions and the site says to report it and that was all I asked. I accepted my husbands death the minute they told me and knew what it was - he was that 1 - someone has to be that 1 and he was it. He drew the short straw. It was being denied any info, any records, when he died, how he died, no calls from any of his doctors (they were not even told) that made me even start looking more into this.

It sounds to me like the hospital is responsible and negligent in their procedure - they appear to be trying to cover it up - and hoped you wouldn't notice (and I'm not one of those people who's all up on suing people and companies - or someone who sees a conspiracy everywhere ) - but if a patient (healthy for the most part) dies unexpectedly - an autopsy should be performed - I do believe this may be the hospitals call unless the family chooses to push for it. Hospitals are in a unique position in that if a wrong drug is given and kills someone. it can be covered up. Not saying he received the wrong drug - just giving you an example. So if they're the ones giving the meds and they're the ones who are attributing the death to XYZ - then they have far too much power! They would choose not to investigate knowing that his death was untimely and likely their responsibility - I know your dr. Sounsd great and knowledgeable and super nice. But that doesnt mean he is not responsible. Even if a death is suspicious who's to say? The dr treating the patient? If he made a mistake - giving the drug late, not making sure the patient was being well monitored - not making sure a heart monitor was applied ( these would -should all be in the Drs. Orders in the chart - ) or even not reading the contraindications and warning correctly or thoroughly - and then he is the one called in to pronounce... Or even another dr. It's very easy to sign off and say... Natural causes... No dr. Wants to make troubl for another dr. Especially a collegue - and no dr. Wants to lose his licence - so given the choice... Like it or not - and nice or not he may choose self preservation...
I'm not sure if I'm thankful I wasn't offered erbitux ( there was a clinical trial they were considering for me) but I'm grateful to you for the warning and trying help others. Take care. And do make the drug company aware.

You have all of my best and a thank you from one who had Erbitux almost 4 yrs ago. I had no problem with it but sure didn't know of any riskes. maybe this is why I have so much trouble since. Along with the Erbitux, I had rads and also rad seed implants put into my tongue. Now I wish I would have asked a lot of questions and not just let them do what they thought best. Thank you again and I'm glad you posted this.

JW, I've been thinking about you since reading this last week and have shared this story several times. Although I don't know you, my heart aches for you. My Dad was diagnosed around the same time as your husband. It is interesting to note that during one of the consults we had at a local CC that the RO suggested Erbitux would be used. This was before a tumor board even reviewed his case. I had read this folder before that session and have been researching ever since.

Dad is about to begin treatment at a CCC. Can anyone suggest the "list" of chemo agents I should research before we get to the planning session Monday so that I'm prepared? Cisplatin is likely, but I'd like to know what else I should research. As I'm still green at this, and this may already exist in another folder, please just redirect if appropriate?

Again JW, you have helped so many people you'll never meet and are suffering so much, it is not fair that I can only offer a thank you.

Caco - I hope everything goes well and you are able to find the right drug that will work. Please research for interactions and risks so you can make the decision for it to be used and on a newer drug make sure the doctor has used it before.

Hmmmmmmmmm.......why the silence???