I swear I posted this last night-guess I dreamed it since I don't see it anywhere. My question is:
Anybody out there on Erbitux now? We'd like to know how other people are handling this drug and will be glad to swap information. Thanks, Amy

Hi Amy,
My name is Lisa, my husband John is receiving Erbitux. He has had 2 treatments so far. He is reacting well and seems to have his best day that day. I'm naot sure if it is the meds or the 2 liters of saline he reiceives. He is ahving more problems with the radiation. Very painful my sores. He is brushing and rinsing with salt/baking soda. however they are so painful he is starting to refuse to eat. Any help with this would be greatly appreciated.
Good luck

Amy
My father took Erbitux this spring at the same time he took radiation. The worst side effect was the acne rash which got pretty bad. He also suffered some long and painful headaches during the first 2 to 3 weeks of the Erbitux but those subsided after about week 3. I have been following your Caregiver Journal Amy and keep you and John in my prayers. Let me know if there is something specific about Erbitux that you were looking for and I would be happy to let you know if we experienced it with the drug
God bless
Kim

My husband has had 6 weeks of Erbitux and has 4 to go. He also had 2 doses of Cisplatin, 4 weeks apart. It's been hard to know what effects came from which drug. But we know that the acne/rash came from the Erbitux. His rash peaked at about 3 weeks. Then the MO put him on an antibiotic and that helped the rash a lot. He's off the antibiotic now and the rash has subsided by 80%. Frankly, we're a little concerned about it because early on, the doc wanted to see the rash because he said it showed the drug was working. Well, now, without the rash, is it still working? We are using Erbitux post-surgery, so have nothing to monitor (compared to Amy's John's tumor that has shrunk since starting Erbitux--Amy, is it still?).

As far as we can isolate Erbitux effects, there seem to be few others. Tom gets two liters of fluid, Tylenol and Benedryl with his weekly Erbitux.

The most troublesome side effect we're dealing with now is dry, cracking skin on Tom's fingers and feet. I know I read this would be a side effect from either the Cisplatin or the Erbitux, but can't remember which (and it's not listed on the info sheets from the hospital). Is anyone else dealing with this?

Amy, thanks for starting this thread. I was going to post the question about cracked skin anyway.

Joyce

I will try to respone in the morning because this is very important,. Sorry guys, Just tpp tired tonite. Amy

I've been on Erbitux for six months and my only side effects have been the rash on my face, chest and back. It is quite common and did calm down after a few weeks. I also endure cracking of my skin---primarily on my fingertips and the heels of my feet but I'm not sure if that's from the Erbitux I still get or an aftereffect of the Cisplatin I got earlier, during radiation.

I started with Erbitux on 28 Feb., two weeks in advance of my radiation/Cisplatin regimen. I get the Erbitux weekly as part of a study at Emory U's Winship Cancer Center (part of a larger SE-regional study)--one of seven in the local group who have signed up form one year's worth of Erbitux.

So far, so good.

Thanks for the responses. John is having a really bad time with the rash [Erbitux induced] His fingers bleed around the nails at the slightest pressure! His face is really bad, and chest and back are also broken out. He is starting on Doxycycline 100mg capsules tonite plus a new antibiotic skin cream. The chemo Doc decreased the dose of the Erbitux today also. So we'll see. His extrnal tumor has disappeared. We can't tell what's happening inside his mouth because he can't open it very wide. But his face is very swollen- don't know if that is tumor or Erbitux related or infection of another kind. Damn this disease!
Lisa, does your husband have a peg tube for nutrition? What is he taking for the mouth pain? This is liable to get worse before it gets better and you will need better pain mamagement. Has he used the "magic mouthwash yet? Tell us more. Amy

An update to my earlier post in this thread. Tom asked his MO if we should be concerned that his Erbi-rash has subsided. The doc said no, that it has subsided because of a) the antibiotic Tom got a few weeks ago and b) a reduction in the dose of Erbitux after the rash "bloomed" sufficiently to show that the Erbitux was working. So, it sounds like he got a big dose so they could see the rash, then the doc backed it off.

For Tom's cracked fingers, we are using a combination of Zinn's Crack Cream and Aquaphor. For daytime, he sprays on the Crack Cream and covers his fingertips with band-aids secured by adhesive tape. At night, he rubs in the Aquaphor and wears cotton gloves. I tease him about looking like a mime!

Hi, TW- question? Where do you get Zinn's Crack Cream? [to this Ozarker, it sounds like something you would use on the farm animals] John has been showering with Head and Shoulders regular shampoo [as a body wash] and taking the Doxy antibiotic above. His Erbitux dose is also reduced. The rash is better, but not gone. What else are they telling you about Erbitux as it relates to the overall scheme of things? Amy

Amy, I don't know about cracked skin from Erbitux but I used to get bad cracks on the soles of my feet from walking barefoot on cold floors in the winters here. Someone suggested Bag Balm (which IS something you use on farm animals) and it works amazingly well!

Nelie