Erbitux rash

fez1

Hi all,
My husband just started Erbitux w/ Irinitican for his 3rd recurrence of Stage IV with liver mets. he is full of the Erbitux rash (face, neck, scalp, chest, back) 7 days after just 1 treatment. He is doing 8 treatments before his next CT scan. He is anxious about this rash, is on an antibiotic,but keeps asking me how long the rash remains after treatment is completed. I have no idea, can't even begin to think that far ahead, and as far as things in our life goes, the rash is the least of my concerns. That said, I told him that I'd put it out to this list for any feedback or personal experiences. Thanks.

Carol

lisa42

Erbitux side effects, recovery, and kras testing
Hi Carol,

I just finished taking Erbitux recently. It has been 4 weeks now since I've had any, and I was on a 50% dose of it the last 3 weeks I took it. I had a horrible rash reaction- my oncology nurses said it was the worst they ever saw. After the first 2 weeks of it, I went off of it 2 weeks to give time for the oral antibiotic to get into my system and for my skin to clear up from all the pustules. I then went back on it at 50% strength because the reaction was so severe. The combo of the oral antibiotic and strength reduction made the acne part of the rash go away completely, but the red splotchy main part of the rash remained. I started using foundation on my face, neck, and chest to cover that. The splotchiness is still there, but is starting to improve. I am hopeful that it will be gone or almost gone in a few more weeks. Another side effect in addition to the rash can be redness/pain/swelling on the edges of the toenails. I had this on two toes and it was getting to be quite painful. When the one started oozing pus, I had to be put on a ten day treatment of some heavier duty antibiotic specific for skin infections. I just noticed today- 4 weeks later- that my worst toe sore is almost completely healed.

Now- a question to you- has your husband been tested for the k-ras gene mutation to see if he's a good candidate for taking Erbitux? If not, the reason I ask is to urge you to have this done on your husband. This testing has been available only recently- since this past January. Not all oncologists have known or have had the capability of having this testing done, however. My oncologist included- I did not have the testing done prior to starting Erbitux. After about 7 weeks after starting it, I had a question for my liver surgeon & emailed him my question (my liver surgeon is not in the same hospital network as my oncologist is and so there was a lack of communication between the two- this is also something I am changing this month) Anyhow...I also happened to mention to my surgeon the chemo treatments I'm taking. He emailed back asking me the same question I asked you above- if I had been tested for the kras mutation. I replied back no & then asked him what he meant. He explained to me that it's a newly available test and is very important to have done prior to taking Erbitux because studies now show that up to 40% of colorectal cancer patients have this genetic mutation in their cancer cells that causes them to not respond at all to Erbitux. I then did my own online research on the kras mutation and found the same information. Well... I had the testing done & found out that I do have this mutation. I was very upset to discover that I had suffered this rash and other side effects all for nothing! Also- valuable time had been wasted by being on it for nothing. Fortunately, the other main treatment I was taking (Camptosar- also called CPT-11 and ironotecan) was still something that could work for me. If your husband hasn't been tested for this (or if you aren't sure), defintely ask about this and request to have it done!!

Best wishes to you and your husband,
Lisa

msccolon

lisa42 said:

Erbitux side effects, recovery, and kras testing
Hi Carol,

I just finished taking Erbitux recently. It has been 4 weeks now since I've had any, and I was on a 50% dose of it the last 3 weeks I took it. I had a horrible rash reaction- my oncology nurses said it was the worst they ever saw. After the first 2 weeks of it, I went off of it 2 weeks to give time for the oral antibiotic to get into my system and for my skin to clear up from all the pustules. I then went back on it at 50% strength because the reaction was so severe. The combo of the oral antibiotic and strength reduction made the acne part of the rash go away completely, but the red splotchy main part of the rash remained. I started using foundation on my face, neck, and chest to cover that. The splotchiness is still there, but is starting to improve. I am hopeful that it will be gone or almost gone in a few more weeks. Another side effect in addition to the rash can be redness/pain/swelling on the edges of the toenails. I had this on two toes and it was getting to be quite painful. When the one started oozing pus, I had to be put on a ten day treatment of some heavier duty antibiotic specific for skin infections. I just noticed today- 4 weeks later- that my worst toe sore is almost completely healed.

Now- a question to you- has your husband been tested for the k-ras gene mutation to see if he's a good candidate for taking Erbitux? If not, the reason I ask is to urge you to have this done on your husband. This testing has been available only recently- since this past January. Not all oncologists have known or have had the capability of having this testing done, however. My oncologist included- I did not have the testing done prior to starting Erbitux. After about 7 weeks after starting it, I had a question for my liver surgeon & emailed him my question (my liver surgeon is not in the same hospital network as my oncologist is and so there was a lack of communication between the two- this is also something I am changing this month) Anyhow...I also happened to mention to my surgeon the chemo treatments I'm taking. He emailed back asking me the same question I asked you above- if I had been tested for the kras mutation. I replied back no & then asked him what he meant. He explained to me that it's a newly available test and is very important to have done prior to taking Erbitux because studies now show that up to 40% of colorectal cancer patients have this genetic mutation in their cancer cells that causes them to not respond at all to Erbitux. I then did my own online research on the kras mutation and found the same information. Well... I had the testing done & found out that I do have this mutation. I was very upset to discover that I had suffered this rash and other side effects all for nothing! Also- valuable time had been wasted by being on it for nothing. Fortunately, the other main treatment I was taking (Camptosar- also called CPT-11 and ironotecan) was still something that could work for me. If your husband hasn't been tested for this (or if you aren't sure), defintely ask about this and request to have it done!!

Best wishes to you and your husband,
Lisa

Just a comment on the toe issue
I was on CPT-11 without Erbitux and i got the issue with the toes as well. I started every day cleaning the sides of my toenails under the bed with antibiotic wipes, squeezed out the pus and it cleared up. From then on I was very careful about cutting my toe nails; making sure i cut them straight across and filed the edges. This helps in not allowing the nail to cut into the bed around the nail, cuts back on infection possibility. I got a lot of damage to my nails from the chemo, but it has all finally grown out! I got the dark lines on them plus they were very brittle and thick. I just had a pedicure done the other day and she was able to get the last of the ickiness off the big toes! My last chemo treatment was end of April, so that's a while for it all to grow out!
mary

fez1

lisa42 said:

Erbitux side effects, recovery, and kras testing
Hi Carol,

I just finished taking Erbitux recently. It has been 4 weeks now since I've had any, and I was on a 50% dose of it the last 3 weeks I took it. I had a horrible rash reaction- my oncology nurses said it was the worst they ever saw. After the first 2 weeks of it, I went off of it 2 weeks to give time for the oral antibiotic to get into my system and for my skin to clear up from all the pustules. I then went back on it at 50% strength because the reaction was so severe. The combo of the oral antibiotic and strength reduction made the acne part of the rash go away completely, but the red splotchy main part of the rash remained. I started using foundation on my face, neck, and chest to cover that. The splotchiness is still there, but is starting to improve. I am hopeful that it will be gone or almost gone in a few more weeks. Another side effect in addition to the rash can be redness/pain/swelling on the edges of the toenails. I had this on two toes and it was getting to be quite painful. When the one started oozing pus, I had to be put on a ten day treatment of some heavier duty antibiotic specific for skin infections. I just noticed today- 4 weeks later- that my worst toe sore is almost completely healed.

Now- a question to you- has your husband been tested for the k-ras gene mutation to see if he's a good candidate for taking Erbitux? If not, the reason I ask is to urge you to have this done on your husband. This testing has been available only recently- since this past January. Not all oncologists have known or have had the capability of having this testing done, however. My oncologist included- I did not have the testing done prior to starting Erbitux. After about 7 weeks after starting it, I had a question for my liver surgeon & emailed him my question (my liver surgeon is not in the same hospital network as my oncologist is and so there was a lack of communication between the two- this is also something I am changing this month) Anyhow...I also happened to mention to my surgeon the chemo treatments I'm taking. He emailed back asking me the same question I asked you above- if I had been tested for the kras mutation. I replied back no & then asked him what he meant. He explained to me that it's a newly available test and is very important to have done prior to taking Erbitux because studies now show that up to 40% of colorectal cancer patients have this genetic mutation in their cancer cells that causes them to not respond at all to Erbitux. I then did my own online research on the kras mutation and found the same information. Well... I had the testing done & found out that I do have this mutation. I was very upset to discover that I had suffered this rash and other side effects all for nothing! Also- valuable time had been wasted by being on it for nothing. Fortunately, the other main treatment I was taking (Camptosar- also called CPT-11 and ironotecan) was still something that could work for me. If your husband hasn't been tested for this (or if you aren't sure), defintely ask about this and request to have it done!!

Best wishes to you and your husband,
Lisa

k-ras issue
Lisa, First let me thank you for your quick and informative reply. And, yes, he was K-ras tested prior to starting. I'm so sorry that you had to go through all of this. My husband is sitting here next to me and he just said the same thing. This rash has gone from annoying to painful plus itchy. He is so self-conscious. Thanks for making us aware of the toe nail issue. He is a painting contractor and stands on ladders for most of the day. He has some left over numbness in his feet from the oxaliplatin. I hope that this isn't next but now we'll be on top of it. Lisa, what's next for you?

Carol

fez1

msccolon said:

Just a comment on the toe issue
I was on CPT-11 without Erbitux and i got the issue with the toes as well. I started every day cleaning the sides of my toenails under the bed with antibiotic wipes, squeezed out the pus and it cleared up. From then on I was very careful about cutting my toe nails; making sure i cut them straight across and filed the edges. This helps in not allowing the nail to cut into the bed around the nail, cuts back on infection possibility. I got a lot of damage to my nails from the chemo, but it has all finally grown out! I got the dark lines on them plus they were very brittle and thick. I just had a pedicure done the other day and she was able to get the last of the ickiness off the big toes! My last chemo treatment was end of April, so that's a while for it all to grow out!
mary

nail issues
Thanks, Mary. He had CPT-11 before without Erbitux also and never had any nail problems but we'll be on the lookout. We've all learned that what doesn't happen one time can happen so easily the next.

Best Wishes,

Carol

lisa42

Hi again Carol,
I'm not
Hi again Carol,

I'm not exactly sure what's next for me. I have one more chemo treatment in this cycle, then I get a CT scan to check on progress. I just saw an oncologist who is from UCSD/Moores Cancer Center in San Diego and I think he is better equipped for my ongoing care than my current oncologist is. I'll need to get insurance approval to make the change. Even without officially changing yet, this new oncologist is going to take my scan results to the next tumor board (as they call their confab meetings) with other specialists to see what they would recommend for me to do next. That will all depend upon what's found (or not found!) in my upcoming scan results. Thanks for asking.

I'm glad to hear your husband was kras tested first before beginning the Erbitux. The oral antibiotic minocycline was very helpful in getting rid of the acne part of the rash for me. I found the topical stuff they gave me just irritated and then dried out my skin so much in areas it was cracking. The oral antibiotic was better. I wish your husband all the best as he continues in his treatment.

God bless,
Lisa

khaddad

lisa42 said:

Hi again Carol,
I'm not
Hi again Carol,

I'm not exactly sure what's next for me. I have one more chemo treatment in this cycle, then I get a CT scan to check on progress. I just saw an oncologist who is from UCSD/Moores Cancer Center in San Diego and I think he is better equipped for my ongoing care than my current oncologist is. I'll need to get insurance approval to make the change. Even without officially changing yet, this new oncologist is going to take my scan results to the next tumor board (as they call their confab meetings) with other specialists to see what they would recommend for me to do next. That will all depend upon what's found (or not found!) in my upcoming scan results. Thanks for asking.

I'm glad to hear your husband was kras tested first before beginning the Erbitux. The oral antibiotic minocycline was very helpful in getting rid of the acne part of the rash for me. I found the topical stuff they gave me just irritated and then dried out my skin so much in areas it was cracking. The oral antibiotic was better. I wish your husband all the best as he continues in his treatment.

God bless,
Lisa

CEA count
Lisa,
I was very interested in what you were saying about the kras test. My husband has stage 4 and has had 3 treatments of vectibix. He also suffered from the severe rash and was put on an actibiotic and that seems to be helping quite a bit. But, the first blood work he had after the first treatment dropped the CEA quite dramatically. I am hoping that tells us its working.
Kim

fez1

khaddad said:

CEA count
Lisa,
I was very interested in what you were saying about the kras test. My husband has stage 4 and has had 3 treatments of vectibix. He also suffered from the severe rash and was put on an actibiotic and that seems to be helping quite a bit. But, the first blood work he had after the first treatment dropped the CEA quite dramatically. I am hoping that tells us its working.
Kim

CEA
Kim- thanks for your post. I'm upset that my husband's CEA is the highest it's ever been and only dropped ever so slightly after his first treatment with Erbitux. I'll follow this closely as a result of your information. Ask your husband's oncologist if he had K-RAS testing on his tumor slides. If they show a mutation in his K-RAS it had been proven that he will not respond to Erbitux/Vectibix. We had this done before my husband was treated. We were very surprised that he did not have the mutation since everything else in this journey has not gone his way. So we started on October 29. I think that your husband's drop in CEA is a great sign that he is responding. His oncologist may have had the K-RAS testing done without you being aware since it is done on his original tumor. Even with a non-mutated K-RAS the statistics of tumor shrinkage with Erbitux are very low. Not sure of the exact percentage but I believe it may be around 10-15%. My husband, however, feels that he has to try everything- even if it had a 1% success rate! Take care.

Carol

kimby

Erbitux Rash
Carol,

I am also on Erbitux and am suffering with the rash. I know it sounds weird, but I use Head & Shoulders shampoo as a body wash for the rash. Something about the zinc content really helps and I have very little rash on my scalp and it is now gone from the rest of my body. My face, however, ick! I use the ointment antibiotic but found once a day is more effective for me than twice a day. I use mineral make up which helps cover, but your husband may object to that! LOL

Good Luck,

Kimby

lisa42

khaddad said:

CEA count
Lisa,
I was very interested in what you were saying about the kras test. My husband has stage 4 and has had 3 treatments of vectibix. He also suffered from the severe rash and was put on an actibiotic and that seems to be helping quite a bit. But, the first blood work he had after the first treatment dropped the CEA quite dramatically. I am hoping that tells us its working.
Kim

Hi Kim,

I'm glad to hear your husband's CEA is dropping! Mine has actually been dropping, too, even while I was on the Erbitx, but I was also on irinotecan and Avastin at the same time.
Is your husband on something else too, other than just the Erbitux?
Keep watching that CEA! I'm sure hoping with a CEA almost normal now (2.5, I think is what it was last week), that my scan in a couple more weeks will show that most of my "stuff" has shrunken. I wish that for your husband too!
Best wishes,
Lisa

fez1

kimby said:

Erbitux Rash
Carol,

I am also on Erbitux and am suffering with the rash. I know it sounds weird, but I use Head & Shoulders shampoo as a body wash for the rash. Something about the zinc content really helps and I have very little rash on my scalp and it is now gone from the rest of my body. My face, however, ick! I use the ointment antibiotic but found once a day is more effective for me than twice a day. I use mineral make up which helps cover, but your husband may object to that! LOL

Good Luck,

Kimby

Head and Shoulders
Hey, Kim. This is so weird but I just bought Head and Shoulders yesterday for him. I thought that it would help the scalp rash (his hair is pretty thin and all you can see is the rash. I'll tell him to use it as a body wash. Thanks for the advice. Best of luck to you!

Carol

menright

Erbitux rash
Dear Carol:

I have just completed my second round of Erbitux. (combined with Xeloda/Oxiliaplatin) The only side effect has been the rash on my face. I feel as if I stood in a cold 50mph wind for 2-days on top of a mountain. Unfortunately I have no photos from the top of Mt. Everest. I have the beginning of the scalp itch too and appreciate the head and shoulders comments.

Any suggestion about a face lotion would be great. I am considering Aveno based on some literature.

Suggestions? I hope not to take any more pills.

Good luck to your husband. Tell him he is not alone and if this is the worst side effect we are very fortunate.

Mike

msccolon

menright said:

Erbitux rash
Dear Carol:

I have just completed my second round of Erbitux. (combined with Xeloda/Oxiliaplatin) The only side effect has been the rash on my face. I feel as if I stood in a cold 50mph wind for 2-days on top of a mountain. Unfortunately I have no photos from the top of Mt. Everest. I have the beginning of the scalp itch too and appreciate the head and shoulders comments.

Any suggestion about a face lotion would be great. I am considering Aveno based on some literature.

Suggestions? I hope not to take any more pills.

Good luck to your husband. Tell him he is not alone and if this is the worst side effect we are very fortunate.

Mike

Erbitux rash
I never took Erbitux and thus have not experienced the rash, but I read an article in a magazine about a man who was going through treatment and suffering with the rash. I cut out a quote and have it stuck to my bathroom mirror. He was discussing the correlation between the rash and how well it's treating the cancer and says "I don't mind looking bad when the cancer's being killed. It's better than lying in the coffin and having people say, 'My, doesn't he look good.'". I look at this every day to remind myself that the physical changes from my cancer and it's treatments are minor... I am still here and I am still enjoying life!
mary

kimby

menright said:

Erbitux rash
Dear Carol:

I have just completed my second round of Erbitux. (combined with Xeloda/Oxiliaplatin) The only side effect has been the rash on my face. I feel as if I stood in a cold 50mph wind for 2-days on top of a mountain. Unfortunately I have no photos from the top of Mt. Everest. I have the beginning of the scalp itch too and appreciate the head and shoulders comments.

Any suggestion about a face lotion would be great. I am considering Aveno based on some literature.

Suggestions? I hope not to take any more pills.

Good luck to your husband. Tell him he is not alone and if this is the worst side effect we are very fortunate.

Mike

face lotion
My doctor prescribed a topical antibiotic called Protopic that helps. I found that twice a day was too harsh for my face so I use it once a day and changed my whole regimin and that has helped the most.

I now wash with pure glicerin soap. Look at the dollar store for the unscented. I found mine at Dollar General for $1. I make my own toner with 1c chamamile tea (brew it normally and cool) 1c witch hazel (again, $1 at Dollar General) and then either a few drops of lavendar and a couple drops of lemon essential oils *OR* 1/2 to 1c or rose water. Mix well. This process just 'calmed' things down and my face is less red and inflamed.

I finish with Lindi face serum in the morning and the Protopic at bedtime. I started using Lindi last winter during chemo and LOVE it. It is hands down the best I've found and will continue to use it post-treatment.

For the rest of the body and rash/dry skin issues, I use Aquaphor. It is an ointment, not a lotion and goes on pretty greasy. It absorbs quickly and absolutely NO odor. Not scent at all.

HTH,

Kimby

fez1

menright said:

Erbitux rash
Dear Carol:

I have just completed my second round of Erbitux. (combined with Xeloda/Oxiliaplatin) The only side effect has been the rash on my face. I feel as if I stood in a cold 50mph wind for 2-days on top of a mountain. Unfortunately I have no photos from the top of Mt. Everest. I have the beginning of the scalp itch too and appreciate the head and shoulders comments.

Any suggestion about a face lotion would be great. I am considering Aveno based on some literature.

Suggestions? I hope not to take any more pills.

Good luck to your husband. Tell him he is not alone and if this is the worst side effect we are very fortunate.

Mike

Rash routine
Hi Mike,
My husband's routine is as follows: wash face gently with a tiny bit of "Head and Shoulders". Then while his face is still wet he applies Lubriderm lotion and allows it to air dry. The key here is to apply any lotion to wet skin. The last time he went to chemo they gave him a tube of Regenecare HA. It has lidocaine in it which may help you because it will numb the tender areas. It helped my husband with that. He had some painful areas. The web site for it is www.mpmmed.com. However, be sure that your face is well lubricated and that there are no open areas since this cream can really sting. Good luck to you, Mike. I hope so much that both of you get good results from Erbitux.

Carol