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.