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Son starting Erbitux-who has experience with it and how it works

lmchils57's picture
Posts: 60
Joined: Feb 2010

My son is starting Erbitux tomorrow, I was curious what others know about it. He will be on it and the irontican (I think I just misspelled that)for however long this works. This will make his third round of treatments. The first worked for about 9 months, the second only 4 months, truely hope we have beeter success with this. Not sure what the next step will be if this one does not work. One tumor in his liver has grown again but otherwise everything is still staple, so if this can keep the anymore growth from happening we will be happy, of course a miracle that things would disappear would be the ideal outcome but we have all pretty well accepted that is not really likely to happen. At this point he has not been doing too well as his gall bladder has also been giving him problems and made it near impossible to eat. They have him on an antibiotic for it as they figure it is an infection so hopefully that problem will go away.
I have not been on here for quite some time as for the most part we have all decided to live life as it comes and not dwell on this horrible disease. Scott does not like letting it control his life as much as that is possible and would like for us to be the same way. Some days that is easier than others. It is is nice though when there are new things that come up to have people to talk to and to get information from.

Posts: 3692
Joined: Oct 2009

It is good to hear from you! I have been on erbitux for ~ 2 months. I am supposed to also be on irinotecan, but my onc has taken me off that for a little while as I was getting severe mouth sores. My normal regimen would be week 1 - erbitux + irinotecan; week 2- erbitux, then repeat. I have not yet had a scan, so I don't yet know how well it is working; I am hoping for good things. I want to wish your son good results with this.

plh4gail's picture
Posts: 1238
Joined: Oct 2010

Hi Linda...I don't know about the Erbitux. I have had 5fu, oxy, and now finishing irinotecan. I wanted to say hi and let you know I'm thinking about you and your son. Lots of good wishes with the chemo.


Posts: 395
Joined: Jul 2010

I am on Erbitux and irinotecan and have completed 7 rounds. It has worked very well so far for me. The Erbitux can cause a rash and very dry skin, but not too many other side effects. The irinotecan causes diarhea and can be very serious so watch for that. Immodium works well for me keeping it under control. I also experience fatigue during treatment week, but I am okay the following week.

I hope it works well for your son.

Take care,

PhillieG's picture
Posts: 4907
Joined: May 2005

Call me Mr Erbitux (among other things). I've been on it for the better part of 4 years and have had very good success with it. So if it works so good, why am I on it for so long??? I keep getting small tumors on my lungs but they grow very slowly or stay stable due to the Erbitux and when they start to get out of hand, they do a RFA (fried tumors) to remove the tumors.
More links here from conversations on this site about erbitux.

It sounds like Scott has a very good handle on his situation. As rough as it can be at times, it's always better to try to not let it consume you.

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lmchils57's picture
Posts: 60
Joined: Feb 2010

I have to say seeing your story and how long you have been fighting this gives me hope. There are times, when he is very sick or when the CEA counts start jumping again or when his plateletts (that is a recent development) go down that it is hard to be positive. This last few weeks were expecially hard since my best friends brother, who had melenoma, was told it had spread to the lungs, bones and brain. We have always been there for each other for things like this and I so wanted to step back and not get involved since I did not want to even think of having to do the things they were having to do. He lost his fight with it last week. But during all this for him of course Scott was told the last treatment was not working and when they did his last CT scan one tumor in the liver had grown significantly, it was extremely hard to keep a positive attitude with everything going on. Now that I have read your story and seen that others have had pretty good results from this new treatment it is easier to be hopeful again. I think this is the toughest road I have ever had to travel and will probably have to travel. If I had it myself it would be easier than watching my son go through it. I pray that neither of my other sons nor any of their children have it happen to them. Scott has three sons and we now know they have to go through early detection and be well aware of their chances of developing it. I knew I had to do early testing since my dad had had colon cancer, he is one of the success stories and his was in the early '70's, but never knew that it could happen to any of us as early as the 30's or earlier. We now know and I will make sure my other sons get tested when they should and also my grandchildren. I WILL BE A NAG, it is my job!! :)
Thank you everyone for answering my question.

geotina's picture
Posts: 2120
Joined: Oct 2009

Go to the website Fight Colorectal Cancer. There is a webinar on May 16th from 8 to 9 p.m. EST. Subject is treating liver metastasis.

You can join in, submit questions, etc. Easy to do. Costs nothing. Valuable information on this site.


lmchils57's picture
Posts: 60
Joined: Feb 2010

Thank you I will try and make that though I think Scott's sons have concert that night so may not make it, hopefully I can get it later if not then.

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