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.