Erbitux RASH!!!

menright · May 2009

I have begun the first of two 3-month chemo plans that include weekly infusions of Erbitux. Like before, I get a terrible looking and very uncomfortable rash on my face.

I want to stop this drug, however I am told it works well with my other chemo drugs (5FU; Folfiri)

Any experience with this drug, the rash and most importantly alternatives please reply.

Thanks,

Mike

eric38 · May 2009

I just started on erbitux. I
I just started on erbitux. I am starting to get the rash and it is driving me crazy but the good news is my oncologist tells me that that is the indicator that the erbitux is working . So the rash is uncomfortable but it is actually a good thing and supposedly calms down over time. The nurse stressed to me before I started erbitux that the rash was a good thing. I`ve actually been praying for the rash.For people who qualify to take this drug it is one of the most promising new drugs for those of us with advanced colorectal disease.

menright · May 2009

eric38 said:
I just started on erbitux. I
I just started on erbitux. I am starting to get the rash and it is driving me crazy but the good news is my oncologist tells me that that is the indicator that the erbitux is working . So the rash is uncomfortable but it is actually a good thing and supposedly calms down over time. The nurse stressed to me before I started erbitux that the rash was a good thing. I`ve actually been praying for the rash.For people who qualify to take this drug it is one of the most promising new drugs for those of us with advanced colorectal disease.

Good Rash
Thanks for the encouragement. I have heard a similar storyline about the Rash being a strong indicator of the efficacy of Erbitux.

I guess I am getting great treatment......this rash is driving me nuts.

Mike

kimby · May 2009

Mike
The best thing I found for the Erbitux rash is Head & Shoulders shampoo. I used it on my bald head as well as a body wash. Sounds weird but there's something about the zinc in it, I think. I also washed my face with plain glycerin soap and made a very mild toner out of witch hazel and chamomile tea. The antibiotic cream my doctor prescribed helped somewhat.

All the studies have proven now that correlation between the rash and response is a myth. Those that are KRAS mutant get the rash and we know it won't work for them. I got the rash and had disease progression. Just one of those things.

As for alternatives, I've had good success with Avastin. Again, we are all so different. I would put up with the rash if it were me (and it was!) I was on irinotecin which made me lose my hair and Erbitux with the rash. Seems like you shouldn't have both at the same time...that just isn't right! LOL PhillieG has been on Erbitux for some time and he'll be along with some great advice. He's been on it so long because it works!

Good Luck,

Kimby

PhillieG · May 2009

Mike, Don't do anything rash...
Sorry, could not resist. I've been on Erbitux for 3+ years and it has helped me a lot. I get a super sized infusion so it's only every other week. At first the rash can be real bad, but as others have said it's a good indicator that it is working. also, after time the rash is not as bad as it is at first. They may have some cremes or lotions that could help you out. Ask them. After a while it can mess with your hands and feet a bit but that might be after prolonged use. The good thing is that after you get off it, things clear up. It's not permanent at all. I had tried Kimby's suggestion and it helped in some ways. We are all different. I was pretty self conscious about it at first but then I noticed most people didn't bat an eye (oh, your eyelashes may grow REAL long. Just a head's up). One time though I stopped to buy lemonade from some kids who set up a stand and you'd think Frankenstein stopped by. They didn't speak, just starred. It was funny then and still cracks me up. Also, I looked at it this way. I didn't have to really look at it, everyone had to look at it. As far as I was concerned, I was fine.
Hope this helps
-phil

lisa42 · May 2009

Erbitux rash help
Hi Mike,

Sorry to hear you've got the nasty Erbitux rash! I experienced it also and my oncology office said I had the worst case of it they'd ever seen. It definitely was not fun- I couldn't even put my head on my pillow without it hurting. Info now shows it's best to start treatment right before starting Erbitux in order to try to prevent the rash. Wish I had done that, but starting an oral antibiotic (probably Minocycline- that's what I took) right away for you is a must! My office just had me try the topical treatments first- they were too harsh for me, as I have very sensitive skin, so I had to stop them. They started me on the oral antibiotic after that. That definitely helped clear the horrid acne pustules up within a couple of weeks. Unfortunately now, eight months after going off of it, I still have some little pits in my skin on most of my face and I also still have some of the red spots. I think I was an extreme case, though, as most people I've read about seem to clear up better than I did.
As Kimby mentioned, the literature on Erbitux now shows that the link between how bad the rash is and how well it's working is a myth (I think maybe invented by doctors who tried to make their patients with bad rashes feel better?). I found out six weeks into taking Erbitux that I tested positive for the K-ras mutation, which meant that the Erbitux did absolutely nothing for me (so dealing with the rash would have been much easier to take if I knew it at least had helped me in some way!)
Hopefully it will help you (you've hopefully already been k-ras tested and are considered "normal" or a "wild type"- it should help in that case.) Good luck with managing the rash. Oh- I used the Scalpicin ointment for relief from the itching, burning, and pain from the rash on my scalp. It did help. I never tried Head and Shoulders like Kimby said she used, but I have heard others say that it really helped them.

Best wishes and hang in there!
Lisa

menright · May 2009

PhillieG said:
Mike, Don't do anything rash...
Sorry, could not resist. I've been on Erbitux for 3+ years and it has helped me a lot. I get a super sized infusion so it's only every other week. At first the rash can be real bad, but as others have said it's a good indicator that it is working. also, after time the rash is not as bad as it is at first. They may have some cremes or lotions that could help you out. Ask them. After a while it can mess with your hands and feet a bit but that might be after prolonged use. The good thing is that after you get off it, things clear up. It's not permanent at all. I had tried Kimby's suggestion and it helped in some ways. We are all different. I was pretty self conscious about it at first but then I noticed most people didn't bat an eye (oh, your eyelashes may grow REAL long. Just a head's up). One time though I stopped to buy lemonade from some kids who set up a stand and you'd think Frankenstein stopped by. They didn't speak, just starred. It was funny then and still cracks me up. Also, I looked at it this way. I didn't have to really look at it, everyone had to look at it. As far as I was concerned, I was fine.
Hope this helps
-phil

Erbitux
Phil:

Thanks for the encouragement. Interesting comment on the eyelashes. My wife and daughter noticed that side effect. It makes no difference to me.

Mike

PhillieG · May 2009

menright said:
Erbitux
Phil:

Thanks for the encouragement. Interesting comment on the eyelashes. My wife and daughter noticed that side effect. It makes no difference to me.

Mike

MIke
That's because they secretly want your eyelashes. One dermatologist I worked with on the erbitux side effects said women would die for lashes like ours. Does us a lot of good, right? One thing to watch out for is that they can grow too long, I've had to cut mine at times and sometimes they grow back and into the eye. They get to be a pain.
Someone mentioned the minocyclin, I forgot to mention that. Definitely look into it. It helped a lot. I still take it every day even though I've cut back on the treatments. I also have had bad issues with my toes and growths by the side of the nails. It's not fun. There is a new Doc I may go see to help clear it up. Some of the rash can be painful at times too. I don't mean to joke about it so much but I really did at one point think "well, I don't have to look at it" and people really hardly noticed. I found it a little hard to believe but unless you really look, we just look sort of redder than normal. Your skin may dry out too. I used a lot of different moisturizers from Bag Balm, to Aveno and sometimes I get rough skin on the back. The side effects will go away like I said. I had it sort of medium and I've been off it for 5 weeks because of how we are doing the cycle now and you can not see any traces of it at all. It is strange at times to be popping zits at age 51 though. My teenage son can relate to me with it :-)
I also found swimming was good for it.
Hang in there, you'll do fine.

taraHK · May 2009

sorry
Sorry you are having this rash. I'm one of those "mutants" who cannot take Erbitux (well, I COULD, but it wouldn't help me). Before I found out about the mutation I was doing a lot of reading about Erubitux -- which I thought I'd be starting. Are you on or have you considered oral antibiotics for the face rash? I understang a lot of folk do that, and that it can be helpful. Best wishes, Tara

menright · May 2009

Erbitux alternate
I had an appointment with my oncologist today. My rash was so bad that he gave me a week off of the Erbitux. I welcomed this decision.

Further conversation may have answered my original question. If I understood correctly, Avastin (sp?) is an alternative to erbitux. My issue is that I recently has surgery and apparently Avastin inhibits the healing process. Hopefully I will get past this and a switch will be made to Avastin and the rash will fade. Wish me luck.

Mike

eric38 · May 2009

menright said:
Erbitux alternate
I had an appointment with my oncologist today. My rash was so bad that he gave me a week off of the Erbitux. I welcomed this decision.

Further conversation may have answered my original question. If I understood correctly, Avastin (sp?) is an alternative to erbitux. My issue is that I recently has surgery and apparently Avastin inhibits the healing process. Hopefully I will get past this and a switch will be made to Avastin and the rash will fade. Wish me luck.

Mike

I understand what you mean
I understand what you mean now, Mike. Last night my face felt like it was on fire and now I have whelps on it. Consulted with doctor - he wasn`t too worried about it.

lisa42 · May 2009

menright said:
Erbitux alternate
I had an appointment with my oncologist today. My rash was so bad that he gave me a week off of the Erbitux. I welcomed this decision.

Further conversation may have answered my original question. If I understood correctly, Avastin (sp?) is an alternative to erbitux. My issue is that I recently has surgery and apparently Avastin inhibits the healing process. Hopefully I will get past this and a switch will be made to Avastin and the rash will fade. Wish me luck.

Mike

minocycline
Mike,

Just a thought- even if you're going off the Erbitux, you might still want to go on Minocycline (oral antibiotic) for a little while to help the process of it all clearing up and healing. Also- I had issues with a toenail getting infected from the Erbitux for months after I went off of it. It literally had just started to bother me the last few days I was on it, but then it lasted for a few months off and on. Just beware if you notice anything like that. Antibiotics can help with that too.
Best wishes!

PhillieG · May 2009

lisa42 said:
minocycline
Mike,

Just a thought- even if you're going off the Erbitux, you might still want to go on Minocycline (oral antibiotic) for a little while to help the process of it all clearing up and healing. Also- I had issues with a toenail getting infected from the Erbitux for months after I went off of it. It literally had just started to bother me the last few days I was on it, but then it lasted for a few months off and on. Just beware if you notice anything like that. Antibiotics can help with that too.
Best wishes!

Knows Toes
I've had a lot of trouble off and on with the toes. It's a strange side effect they are still trying to figure out. My Onc just gave me the name of a MD in NYC who is supposed to be very good at dealing with this.
-p

clarereal · June 2012

taraHK said:
sorry
Sorry you are having this rash. I'm one of those "mutants" who cannot take Erbitux (well, I COULD, but it wouldn't help me). Before I found out about the mutation I was doing a lot of reading about Erubitux -- which I thought I'd be starting. Are you on or have you considered oral antibiotics for the face rash? I understang a lot of folk do that, and that it can be helpful. Best wishes, Tara

mutation
Do Drs. automatically test for the mutation that prevents Erbitux from working or should we ask them to do so? Anyone? Thanks.

clarereal · June 2012

taraHK said:
sorry
Sorry you are having this rash. I'm one of those "mutants" who cannot take Erbitux (well, I COULD, but it wouldn't help me). Before I found out about the mutation I was doing a lot of reading about Erubitux -- which I thought I'd be starting. Are you on or have you considered oral antibiotics for the face rash? I understang a lot of folk do that, and that it can be helpful. Best wishes, Tara

mutation
Do Drs. automatically test for the mutation that prevents Erbitux from working or should we ask them to do so? Anyone? Thanks.

Nana b · November 2013

PhillieG said:
Knows Toes
I've had a lot of trouble off and on with the toes. It's a strange side effect they are still trying to figure out. My Onc just gave me the name of a MD in NYC who is supposed to be very good at dealing with this.
-p

Bump.

Bump.

UncleBuddy · November 2013

menright said:
Erbitux alternate
I had an appointment with my oncologist today. My rash was so bad that he gave me a week off of the Erbitux. I welcomed this decision.

Further conversation may have answered my original question. If I understood correctly, Avastin (sp?) is an alternative to erbitux. My issue is that I recently has surgery and apparently Avastin inhibits the healing process. Hopefully I will get past this and a switch will be made to Avastin and the rash will fade. Wish me luck.

Mike

antibiotics

My brother's rash cleared up with minocycline and a topical hydrocortisone creme. The Head and Shoulders seems to help too. His CEA numbers came down quite a bit, so I think it was working. He is in the hspital now for a complication from the chemo (clots in lungs) so he has stopped chemo for now. Talk to yuor oncologist, because if it's working for you, you may want to consider staying on it and getting some meds to clear up the rash. Good luck!!!

Lin

sharpy102 · November 2013

UncleBuddy said:
antibiotics
My brother's rash cleared up with minocycline and a topical hydrocortisone creme. The Head and Shoulders seems to help too. His CEA numbers came down quite a bit, so I think it was working. He is in the hspital now for a complication from the chemo (clots in lungs) so he has stopped chemo for now. Talk to yuor oncologist, because if it's working for you, you may want to consider staying on it and getting some meds to clear up the rash. Good luck!!!

Lin

?

People: The OP asked for advice back in May 2009. Is he around at all to bring this topic back up? Just curious, not trying to be mean....

Nana b · November 2013

sharpy102 said:
?
People: The OP asked for advice back in May 2009. Is he around at all to bring this topic back up? Just curious, not trying to be mean....

I really think that those

I really think that those that have passed would want us to share and learn their knowledge, or knowledge shared in the topic. This has been an active topic. I know Lisa would want us to reread and any word that she shared with us, as would I. How can you really get around those that have passed, you can't, nor do I want to forget them. Just saying. I've been in this board 5 years, no disrespect.

sharpy102 · November 2013

Nana b said:
I really think that those
I really think that those that have passed would want us to share and learn their knowledge, or knowledge shared in the topic. This has been an active topic. I know Lisa would want us to reread and any word that she shared with us, as would I. How can you really get around those that have passed, you can't, nor do I want to forget them. Just saying. I've been in this board 5 years, no disrespect.

was not trying to be mean

Nana,

I did not mean to be mean, just found it weird how no one actually needed info on a post from 2009 and yet it showed up on the top of the discussion board. I was not trying to be mean, and I know what you are saying about some older members who have since left us, I basically have been on this board same time as you (with a month earlier than you). So we're old foxes here, and we know those people...it was just weird to see it getting bumped up without anyone asking for it...that's all.

All the best to you!

Nana b · November 2013

sharpy102 said:
was not trying to be mean
Nana,

I did not mean to be mean, just found it weird how no one actually needed info on a post from 2009 and yet it showed up on the top of the discussion board. I was not trying to be mean, and I know what you are saying about some older members who have since left us, I basically have been on this board same time as you (with a month earlier than you). So we're old foxes here, and we know those people...it was just weird to see it getting bumped up without anyone asking for it...that's all.

All the best to you!

No problem. I've been in

No problem. I've been in here since Nov 2008, but I left the group and cane back. Past the 5 year mark and back on Chemo, I gave the terrible rash we have been discussing with some others on the sane chemo.

Understand. Thanks.

Erbitux RASH!!!

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