Don,

I asked the Doctors the same questions you did and was told that the efficacy of the drug Cetuximab on it's own was neck and neck with any of the other drugs available for Oral Cancers, however, they needed a longer time frame to see this fully playout and they also wanted to get a better grasp on the difference in the side effects between Cisplatin and Cetuximab.

Thanks Matthew. Than confirms what I read of the goals of 1016 - that is to not determine of cetuximab was more effective as a cancer agent, rather if the side effects might be less using that drug. Did you happen to research completed trials where those two drugs were specifically compared? Seems like that match up would exist. Thanks Don

That explains it being reopened because NCI has it down as being currently closed, and if so, was wondering what trial you were on and how. I'm reading that targted therapy Erbitux vs platinum based chemo, Cisplatin, is showing comparative results, less toxicity, but not as successful with distant mestastes as systemic chemo therapy. One of the side effects of Erbitux is the rash, which they probably already told you about. Minocycline should take care of it. Good luck.

Don,

I did research some of the trials and Stanford also handed out the literature. It does appear that Cetuximab has less severe side effects than the platinums.

Thanks Paul, I knew about the rash but didn't know about the Monocycline. I'll have to get some as I have been informed that I will most likely get a nice rash after about 7-10 days into this. They told me the main side effect would happen shortly after the first loading dose, a massive headache, and they weren't fibbing either. It was brutal but only lasted through the first night and most of the next day. They say it wont happen again. Been pretty normal since then. We will see after I get another lower dose on Monday and start radiation...thanks everyone

Minocycline was the best, as of last year, to resolve the rash,. The weekly dose should be about 270mg now, loading dose was around 470, I believe. I used soft gel soap, dove, cetaphil, and they mentioned sensitive head and shoulders, cause you can get the rash on your head, I did, and the usual dry neck and skin cream, ceptaphil, aquaphor, and Ersuen on the hands feet, and feet, and glutamine powder, , jueven for neuropathy, healing in mucosal areas. Good luck.

My husband was not in the trial, but his treatment protocol was quite similar to it. He did not get the headache, but did begin to develop the rash around the time of the second infusion.

This trial is the first to pit cetuximab against cisplatin in a statistically meaningful way. The Bonner data it is based on looked at radiation alone vs. radiation plus cetuximab, which showed an improvement of the combined therapy over radiation alone which was on the order of the improvement adding concurrent cisplatin or carboplatin to radiation. One of the things the Bonner data did show was a correlation between the rash and improved survival - so don't be crabby if you get one :-)

Also - do your very best to keep every radiation appointment - that is very important to getting the best outcome. Keep your nutrition and hydration levels up so as to not have any medical drama and miss being zapped. Also, since you are in California, there will be sun even in January, so get a good sun hat (my husband used one with fabric down the back like a foreign legion cap). Also, long sleeves and sun block. You will want to avoid sun exposure to both the rash, and to your neck after the rash is gone.

All the best to you in this journey!
Maria

Matthew, I was diagonsed in May stage 4 tongue/tonsil and one lymph node. This has been a nightmare since. Had to hve my teeth removed before tretments and a wk later suffered a stroke. All I have to say is hang in there. Our stories are all different. I began treatment July first. 35 wks rad. and once a week for 7wks, cisplaten. My first Pet Scan in Nov. showed as cncer free. At the moment I have gruelling tongue pain and constantly feels swollen. Not sure if this is norma.The dry mouth is excrutiating. I am almost 5 mos. out of treatment. They have me on Oxycontine 24hrs. for past 7 m,and I am 100 percent feeding toube. if anyone can give me advice, ideas I would appreciate. Having a difficult time trying to figure out this chat format. Some days I dont know what Im doing. Not much of a computer person. I live on Whidbey Is. so 100 miles from any support groups. Good Luck Matthew!

Paul,

8 days in and my rash is now pretty bad on my face. Just took second dose of Cetuximab yesterday. Dr. prescribed topical Clindamycin which I applied last night and this morning. Will this drug hold the rash at bay or do you think I should also ask the Dr. for Monocycline? I asked the infusion nurse yesterday about it and she said she thought that most people get the topical gel. Maybe I need to wait a few more days to see how this Clindamycin works, but my face is still on fire.

As soon as I got one pimple I was given oral Minocycline. That took care of it for my face in a day, but still had pimples on my scalp, arms, legs, probably more from dryness. I'm not sure about the topical agent, and would go with what they recommend, but from my reading, what I was given, minocycline was the latest and most effective antibiotc being used for the Erbitiux rash, but sure not the only one.

Thanks for the info Paul. Both the Oncologist and the Radiologist were happy to see such a vibrant rash on my face as it's a good indicator for the efficacy of the drug. But for quality of life they sent me next door to the dermatologist who prescribed Keflex-1000mg/day(not as sensitive to radiation or sunlight), Desonide topical creme and some Derma Smoothe for my scalp....what a mess my face is, looks like a pizza...that mask I have to wear for radiation makes it brutal...but, i shouldn't complain as I know it could be a lot worse, just keeping my fingers crossed I can get this rash under control in the next few days. There have been no other noticeable side effects from the Cetuximab so far. They are doing labs everyweek on me and everything is normal except this time my WBC count was slightly elevated to 11.4 but they attributed it to my skin rash.