I know there are a lot of things associated with oral cancer that cause fear and I hate to add one but feel people should be aware of the risk of anaphylaxis (severe allergic response) and cetuximab (erbitux).

Up until now I have not posted of my husband's oral cancer recurrence and his grim prognosis. Because the cancer had spread to his pulmonary lymphatics, the only course of treatment was chemo for symptom control. The triple cocktail of cisplatin, 5FU and cetuximab was to be used. He was to receive standard antihistamines prior to his infusion.

Yesterday during his first infusion ever of cetuximab he experienced a severe allergic reaction which closed his airway and led to cardiac arrest. It all happened very quickly. He was able to be intubated but only with great difficulty. Given the amount of time he was without circulation, at our request the tube was removed and he died this morning.

A quick internet search reveals that allergic reactions are a well known side effect. Epidemiological data also point to a higher incidence in certain parts of the US and may be related to a history of tick bites. Though in Australia, my husband worked in the bush and regularly came home with tick bites.

A cruel twist to cruel treatment for a cruel disease. I have been blindsided and feel totally unprepared.

I am so sorry for your loss. I do not think words can ease the pain. Having been on Erbitux that is a potential side effect.

I am so sorry for your loss, I know that these words are meaningless to you at this point but I wanted to say them anyway. This is the most horrific thing that I have seen so far, I usually share things with my husband about what I encounter here on the site. But If I told him this story he would stop me from starting a new chemo med that was prescibled to me today. I thank you for the courage to post this, I always here tell of the chance of severe allergic reactions but now I see they are very downplayed.
This is a travesty. I am so sorry, Shawn U.

Laura,you must be so shocked and reeling from this. It is just awful.
Unfortunately I do recall another member of this site who reported the same thing happening to her husband. I think she posted as Johnswife.
I am so sorry that this has happened to you too. There is nothing I can say to comfort you, but please know that you and your family are in my thoughts and prayers.
Take care,
Tammy

Im so very sorry! This must have been a terrible shock to you losing your husband so quickly. I know words are of little comfort right now. Keeping you in my thoughts and prayers.



PS...I also remember the same incident happening to another member.

So so sorry but I'm glad you are able to share this with us.

I am so very sorry to hear this. It must be really horrible. Keeping you in my thoughts.

I'm very sorry for your loss.

I am soooo sorry to hear this. I know it's tragic, and want to thank you all the more for the warning. Maybe I can share something that may be of small comfort to you.
My mom was a good person to many. Her friends looked a lot like refugees from the very hardest of life's difficulties. Most of them were infirm or had something that severely impeded their lives. As amazing and big hearted as she was she wasn't without her vices - she was a heavy smoker, former drinker (though by the time she passed she hadn't drank in 25 years) and she was a big caffeine addict. My mom was diagnosed at 56 with terminal lung cancer. She went through treatment and we had three great years with her before she passed at 59 (a month shy of her 60th birthday) A few months before she died we were told the radiation they had given her as preventative a few years earlier, hadn't worked and she had 6 tumors in her brain - of various sizes - the biggest being the size of an egg. It looked like it was going to be a long horrible and painful death facing her. (I lived through my friend passing last year at the age of 48 - from peritoneal cancer - its a special kind of horror to say the least) Less than a month after getting this news, my mom had a bowel perforation - her intestine was blocked and it had burst. She became septic and passed peacefully within the week. As painful as it was to lose her, I was also grateful she passed so quickly and relatively painlessly. She was a good person and didn't deserve to die a slow and painful death. I am not a super religious person, but I do believe in god and have found comfort in the belief that he took her home to him before she really had to suffer. Hugs

Thank you for sharing during this time of grief. It is just so sad and sudden and shocking. First the recurrence and then the fatal reaction to the chemo. Please know you are in my thoughts and prayers. don

I am so very sorry for your loss. I cannot imagine what you are going through right now. I had no idea this could happen from Erbitux. Thank you for sharing this and I pray that you can find some comfort in the future.
Blessings,
Kathy

I am so sorry for your loss. I cannot imagine how you are feeling now after such a shock. Thank you for posting the warning. I also recall the incident with another OCF member. My thoughts and prayers are with you.

Shawn, from what I have read about cetuximab I think you should go for it. It is the best known way to improve your odds. Having said that -- report anything funny once the infusion starts. Immediately. The staff should be fully prepared for allergic reactions but maybe drop a comment about this drug causing severe reactions and is the stuff to treat reactions close at hand?

I think the staff at our hospital outpatient clinic was as prepared as can be expected for something that rarely happens. I am in no way critical of their response. I think my husband reported feeling itchy and short of breath immediately but this event hit like a bomb. I am not anti-cetuximab but I have read that there is a test to see who is at higher risk of having an allergic reaction, who has a particular antibody that may set it off, but it is not widely used.

This falls into the category of "stuff happens". But beware and be prepared.

Your words are not meaningless. Your thoughts are appreciated. Thank you and all the best. Laura

Cheryl, what can I say? The future as I understood it was that he would have increasing difficulty with breathing and continue to feel too tired to do any of the things he enjoyed. I am profoundly relieved but profoundly impacted by the shock and suddenness of the way things turned out. It is like trading one set of worries for another but I will always feel that it turned out right. Thanks for sharing because it reinforces this view. Laura

I'm so very sorry for your loss. Thanks for the warning even when there must be a host of other things that you will have to deal with. Thank you for thinking of those who are still fighting the dreaded disease.

My blessings go out to you at a very difficult time I do hope that you and your family get some peace and know that he is with you always.

I am not a superstitious person either but I do believe our family members do stick around to make sure we are okay for a time after they have gone. Since it's almost Halloween I will relate a spooky story. My dad passed this year in March and one night a month ago we sat at the table discussing "paranormal phenomenon" with some family members. At the time I first said - I knew my mom was around quite a bit after she had passed, checking up on me and my stepdad, but I couldn't remember the same feeling with my dad. Then I remembered a few nights after he passed I was sleeping, and felt someone kiss me on the mouth. It had always been funny with my dad because he liked to kiss on the mouth where as I was a cheek kind of girl. At the time, even though I was asleep, I remembered thinking oh that's dad coming to say goodbye. Jump ahead a few days after the dinner at the family members and the paranormal conversation and my step mom tells me she is going to see a psychic. I meant to tell her to say hi to dad for me when she went but my father in law is not well and it just slipped my mind. A few days later she called to tell me what had happened and that the psychic had told her that after my dad died, he came to visit me to tell me he loved me. This gave me chills and still brings me to tears. I told her that in fact he had... I had just remembered it on the weekend when I'd been talking to a family member. She told me I'd never mentioned it to her. And I hadn't because I had completely forgotten the incident. They do stay with us.

Cue the twilight zone music. hugs & blessings to you.

A few weeks after my dad passed away I was having an exceptionally hard time with missing him. He used to take my face in his hands and rub his beard stubble on my face. I told my husband I just wanted to feel his beard on my face one more time. That night I had a dream. I was in a store shopping and turned around to find my dad behind me. I said "Daddy, what are you doing here, you died?" He took my face in his hands, rubbed his stubble on my face and said "just giving you your one more time!" I woke up sobbing, then realized my face felt prickly and hot where he had rubbed in my dream. Just crazy but filled me with peace.
Kathy

It does bring an amazing amount of peace. hugs.

I cannot begin to tell you how much this hurts my heart and I know yours is breaking. It makes me so sad to read about your husband and that this happened to someone else. I am Johns Wife (Laura) and my husband died in 2011 minutes after receiving Erbitux. He was 24 days into treatment for cancer in his throat. It was a reply to my post here (June 2011) that alerted me to the tick bites and the link to an infusion reaction with Erbitux. It is proven that the tick bite is the cause of the allergic reaction (Dr Platts-Mills made this statement at a conference in San Diego earlier this year). The drug company is aware of this allergy and it is simple to test for Alpha-Gal but unless you search both Erbitux and Tick Bite together you will not find any information about it. Not in the literature or package insert or anything on-line. Again, I am so sorry for your loss.

Laura, I'm so sorry. I hadn't seen you on the forum for a while and hoped all was going well. I am so so sad to read this, and will be thinking of you and your family. I think I pm'd my number to you at some stage because you live quite close. Ring me anytime if you would like to talk. Linda

[quote]The drug company is aware of this allergy and it is simple to test for Alpha-Gal but unless you search both Erbitux and Tick Bite together you will not find any information about it. Not in the literature or package insert or anything on-line.[/quote]
This seems criminal. If there is a known fatal reaction, or at least serious, it sure seems this should be noted on all information associated with the drug.
Clearly, the drug company would rather keep these things quiet, especially in very low incidence cases, but it is still quite disturbing to learn the FDA does not have more standards in place to warn practitioners.

Some doctors seem to know about it. I found out about the tick bite from someone in this group whose doctor had warned him. I agree, it is criminal. One death or a thousand it does not matter. A person should be able to make an informed decision if to use a drug or not. For someone to die a horrible death like this is just not acceptable - especially when all it would take is a simple blood test to check for the antibodies.