This may be a long, rambling post. My apologies in advance.
Also, this may get very detailed and gross.....you have been warned.
Oh - if you're a guy, this may be of very little interest, especially
towards the end. I talk about make-up. :)
I wanted to post about my Erbitux rash, for a few reasons. I know there are people who google things like "erbitux rash" or "remedies for erbitux rash" and somehow get routed to my blog. While that in and of itself is terrifying, I realize that it's kind of my duty and privilege to post how the Erbitux is affecting me and how I'm dealing with it. My hopes in doing this is that maybe, maybe, I can help someone else who is dealing with this awful rash. In addition to that, I like to keep myself updated, so that when chemo brain kicks in and I can't remember what I did last time, I can look it up and try to use similar remedies.
So....last Friday (well, two Friday's ago now), I had a single, normal dose of Erbitux. For a month or so, my dr had been breaking the typical 500 units of Erbitux into two, 250 unit doses, in the hopes that I would have a lessened reaction. Since that seemed to work, and my CEA is going down (and I'm doing really well on this regiment), he decided to shift to a bi-weekly dose of 500 units. From a time standpoint, this makes perfect sense. One single 2-3 hour session in infusion in two weeks, rather than two 2 hour sessions weekly makes much more sense, especially as I continue to think about going back to work.
My biggest concern was that the rash would kick back in full force, and maybe even worse, after the initial 500 unit dose.
It was a well-founded concern. I am now at day 9 post-chemo (this is my third or fourth round of chemo), and the rash has definitely kicked in, after easing during a 2 week break. The interesting thing is that the location and severity of the rash is different than it was last time, when I started this regiment in 2012. I don't know if that's because I was on another chemotherapy drug along with the Erbitux last time, or if it's just a biological thing. Regardless, it's different this time.
Side note: some of you may be asking why this "rash" is a side effect of this medication. Good question. I used to know this, and admittedly, forgot. So, I went to my friend, Mr. Google, and asked him. Here's what I found., courtesy of the American Cancer Society on this page.
I wanted to post about my Erbitux rash, for a few reasons. I know there are people who google things like "erbitux rash" or "remedies for erbitux rash" and somehow get routed to my blog. While that in and of itself is terrifying, I realize that it's kind of my duty and privilege to post how the Erbitux is affecting me and how I'm dealing with it. My hopes in doing this is that maybe, maybe, I can help someone else who is dealing with this awful rash. In addition to that, I like to keep myself updated, so that when chemo brain kicks in and I can't remember what I did last time, I can look it up and try to use similar remedies.
So....last Friday (well, two Friday's ago now), I had a single, normal dose of Erbitux. For a month or so, my dr had been breaking the typical 500 units of Erbitux into two, 250 unit doses, in the hopes that I would have a lessened reaction. Since that seemed to work, and my CEA is going down (and I'm doing really well on this regiment), he decided to shift to a bi-weekly dose of 500 units. From a time standpoint, this makes perfect sense. One single 2-3 hour session in infusion in two weeks, rather than two 2 hour sessions weekly makes much more sense, especially as I continue to think about going back to work.
My biggest concern was that the rash would kick back in full force, and maybe even worse, after the initial 500 unit dose.
It was a well-founded concern. I am now at day 9 post-chemo (this is my third or fourth round of chemo), and the rash has definitely kicked in, after easing during a 2 week break. The interesting thing is that the location and severity of the rash is different than it was last time, when I started this regiment in 2012. I don't know if that's because I was on another chemotherapy drug along with the Erbitux last time, or if it's just a biological thing. Regardless, it's different this time.
Side note: some of you may be asking why this "rash" is a side effect of this medication. Good question. I used to know this, and admittedly, forgot. So, I went to my friend, Mr. Google, and asked him. Here's what I found., courtesy of the American Cancer Society on this page.
HOW DOES THIS DRUG
WORK?
Cetuximab is a type of
immunotherapy known as a monoclonal antibody. A
monoclonal antibody is a man-made version of an immune system protein that fits
like a lock and key with one certain protein.
Cetuximab is designed
to seek out and lock onto a protein called epidermal growth factor
receptor (EGFR), which is located on certain cells in the body.
Some cancers have higher than normal numbers of these receptors on their
surfaces. Once cetuximab attaches to these cells, it brings in other immune
cells to help kill them.
In colorectal cancer,
this drug does not work if the cancer cells have a mutation in the KRAS gene.
Your doctor will test your cancer cells to be sure the cells are KRAS
mutation-negative (they do not have this mutation) before starting treatment
with this drug.
A rash on the face, neck, and trunk often starts during
the first 2 weeks of treatment and goes away after treatment is stopped. The
rash can look like acne, and cause infections, abscesses, or dry, cracking
skin. It can also affect nails, eyelids, and the eyes themselves. Tell your
doctor if it starts to bother you or if it starts looking infected. Sunlight
can make the rash worse. Protect your skin with clothes, sunscreen, and hats,
and limit your sun exposure while getting this drug
and for 2 months after treatment.
In 2012, the rash was extremely prominent on my face.
Make-up helped, but it was still very obvious, and very difficult
from a self-esteem standpoint, especially when you couple the rash with being
bald, which I was.
This
time, the rash has definitely kicked in on my face, but so far, it's no where
near as bad as it was last time. So far, the rash is centered on my nose
and mouth area, popping up as under the skin pimples, with some random ones on
the rest of my face. In addition to that, I also seem to have them in and
around my ears, which is very weird. That part is odd, because it's just
super tender when they kick up around my ears, sometimes making wearing my
glasses or sunglasses painful. The rash has also creeped down my neck,
which isn't too bad, since I just use a little bit of foundation powder to
cover that up.
There are really two parts of this 2014 rash that bother me. First is the rash on my upper back. It is just awful. I may have Levi take a picture of it. Because I can't reach my back to apply some of the topical stuff I use on my face (more on those later), the rash seems to be worse. It is pretty bad - red, small pimple-like bumps all over my upper back. And, they itch.
The other issue is that my skin is uber-dry, which is just made worse by the fact that it's winter in the desert. There is no moisture in the air, and anything you put on your skin dries up immediately.
Oh - I guess there's a third component to the 2014 rash that drives me up a wall - the rash is also on my scalp. I have hair this time, which helps hide the rash, but oh my goodness - the itchiness is enough to drive me batty.
So, how am I dealing with this rash? We are hitting it from a variety of angles, and I know that those are making the rash less than it would be if we weren't doing anything. First, I am on an antibiotic, doxycycline, to help combat the rash. I take this twice a day, and started it about three days prior to my first dose of Erbitux. I know this helps....I just know it.
In addition to this, I am using many topical treatments to help combat the acne and dryness. I start my cleansing regimen with a gentle soap on my face. I am very gentle with my skin; I wash it with my hands (which I have washed prior to this routine), as it's already tender and sore from the swelling caused by the acne.
***Using any acne products makes the dryness worse, and will not help. Traditional acne medications work on the concept that there is a bacteria (or something like that) causing the acne. Because the Erbitux rash is caused by a chemotherapy-type medication, acne medication will not work, and will only dry your skin out more.***
After a gentle rinse and drying, I apply a hydrocortisone cream, prescribed by my naturopathic doctor. I use this day and night, and it helps to lessen the redness and helps with the swelling. When I started using this (I had already had some of the rash on my skin), I saw a significant decrease in the redness and swelling. Needless to say, I use this religiously.
After the cream (which is thick and helps my skin retain moisture), I then apply a calendula cream (also diagnosed by my naturopath). I love this cream - it is gentle and smells nice, but I can also use it on other parts of my body, like my shoulders, elbows, and arms, where the dry skin seems to be getting worse.
After that, in the morning, I use a daytime moisturizer that has an SPF of 15. This is essential, as Erbitux skin is extremely sensitive to the sun. At night, I use a nighttime moisturizer, which is a bit thicker. I also apply an eye cream at night, as the skin around my eyes is very dry and will flake off if I don't apply a little extra love there. :)
At night, I use a shea butter lotion (it's really more like a thick cream) on both my hands and feet. Erbitux can and will cause dry, cracked skin, and the best way to combat that it using lotion....all the time. I actually carry two different lotions in my purse, and we have bottles of lotion in almost every single room in the house. I douse my feet in the thick cream at night, then cover them with aloe-infused socks to maintain the moisturizing effect. I have also used white, cotton gloves (found them at the pharmacy at CTCA) over a thick layer of cream. I am constantly using lotion on my torso, as the skin there seems to be permanently dry. It's not uncommon to see me in my house, slathering lotion on my skin before I go somewhere.
Most of the cracked skin I've gotten is on my thumbs, and it can be pretty painful, in the way that a well-placed paper cut can. I asked my docs about it - they recommended using super glue to hold the skin together. Believe it or not, it worked! I have a bottle of that sitting on my counter, and while my kids think I'm nuts, it totally works.
I talked about my dry scalp - it itches so much, and there is acne on my scalp, so my poor head is just insanely sensitive. No coloring my hair for a while, which is fine. I guess. :) I have gone through a bunch of shampoos and conditioners, and none of them really worked well. I talked with my naturopath about it, and he recommended Selsun Blue. I was skeptical, but guess what - it worked! The itching and sensitivity hasn't gone away completely, but it is definitely getting better. He also said that you can use it as a body wash....I tried that yesterday, and it did work.
What else? Oh - my make-up routine. I think this is important....as girls, we want to look pretty. I know that I wear make-up even on days when I am not leaving the house. I just feel better when I have some mascara and blush on. I've learned that that is just how I am. So, you can imagine that, with a bit of acne on my face, I am obsessed with wearing make-up.
I've learned that spending a little more on good make-up is worth it. The make-up lasts longer, is easier on your skin, and works better. I have tried several different brands, and I like MAC. This has been especially true with this rash. I went in, and the kind ladies there were more than happy to walk me through what products might work best. You can go in and for a fee, have a complete make-over, but I go in and ask for a specific item (say, foundation) and they are willing to help for just the cost of the products.
This time around, after all of my moisturizers, I use a make-up primer that has a bit of a tint in it. It helps even the skin tone out, and makes the foundation I use last longer. Now, as a foundation, I actually use a concealer. For my foundation. It's brilliant. It covers all of the redness and isn't heavy, which I really like. Is it unconventional? Yup. Does it work? You bet it does. I then use a foundation powder to set everything. After that, I go into whatever make-up I want to use for the day. I've found that, for the most part, this routine will last me from say 7am until I get ready for bed at 8pm. If I'm going out somewhere, I may touch-up with my powder foundation, but that's it.
I have found that using an eye shadow primer works well, too. The skin around my eyes is so dry that it will absorb the make-up, if I don't use a primer. Using the Painterly paint pot from MAC helps even the skin on my eyelids out, helps set the make-up, and also keeps my make-up from running, which I was having a wicked time with.
With regards to the overall issue of dry skin, there is one other thing that I have found helps. Oatmeal baths. Sitting in the warm (not hot - hot water dries the skin out...) bath, letting the oatmeal do it's thing, helps enormously. Don't rinse the oatmeal off when you get out, and try not to scrub your skin dry. That's good advice for your daily showering, too. Try to let the towel gently run the skin....scrubbing the skin dry will only overdry the skin and irritate it.
Let's see. I think that might be it. This drug, while well tolerated, is not easy to deal with. No, it doesn't make me nauseous, and it doesn't cause me to be down and out for days on end. For that, I am grateful. But, dealing with the rash, which gets worse over about a 2 month period then, hopefully, starts to calm down, is hard. It's difficult to see your body transform from something you know to a new, seemingly ugly place where you're forced to reside. As a woman, that can be more difficult than dealing with the nausea or headaches or vomiting. I know it has been for me. Does that make me arrogant or snooty? I don't think so. I hope not. I just know that, as a woman, how I look (or how I feel I look) can fundamentally effect my mood, my emotional stability, my entire day. Having to deal with cancer, then having to deal with a sudden, immediate onset of acne, dry skin, and tender scalp can be overwhelming.
Talk with your doctor. Ask him to help you with some preventive meds to help with the onslaught of acne. Check online with some of the amazing organizations that can connect you with others that are dealing with this medication. Try to find a "Look Good Feel Better" meeting through the American Cancer Society. Spend a little time (and maybe ask for gift cards for make-up) and learn some new make-up techniques.
And, remember. No matter what - you are beautiful. Your family and friends love you....acne and all.
There are really two parts of this 2014 rash that bother me. First is the rash on my upper back. It is just awful. I may have Levi take a picture of it. Because I can't reach my back to apply some of the topical stuff I use on my face (more on those later), the rash seems to be worse. It is pretty bad - red, small pimple-like bumps all over my upper back. And, they itch.
The other issue is that my skin is uber-dry, which is just made worse by the fact that it's winter in the desert. There is no moisture in the air, and anything you put on your skin dries up immediately.
Oh - I guess there's a third component to the 2014 rash that drives me up a wall - the rash is also on my scalp. I have hair this time, which helps hide the rash, but oh my goodness - the itchiness is enough to drive me batty.
So, how am I dealing with this rash? We are hitting it from a variety of angles, and I know that those are making the rash less than it would be if we weren't doing anything. First, I am on an antibiotic, doxycycline, to help combat the rash. I take this twice a day, and started it about three days prior to my first dose of Erbitux. I know this helps....I just know it.
In addition to this, I am using many topical treatments to help combat the acne and dryness. I start my cleansing regimen with a gentle soap on my face. I am very gentle with my skin; I wash it with my hands (which I have washed prior to this routine), as it's already tender and sore from the swelling caused by the acne.
***Using any acne products makes the dryness worse, and will not help. Traditional acne medications work on the concept that there is a bacteria (or something like that) causing the acne. Because the Erbitux rash is caused by a chemotherapy-type medication, acne medication will not work, and will only dry your skin out more.***
After a gentle rinse and drying, I apply a hydrocortisone cream, prescribed by my naturopathic doctor. I use this day and night, and it helps to lessen the redness and helps with the swelling. When I started using this (I had already had some of the rash on my skin), I saw a significant decrease in the redness and swelling. Needless to say, I use this religiously.
After the cream (which is thick and helps my skin retain moisture), I then apply a calendula cream (also diagnosed by my naturopath). I love this cream - it is gentle and smells nice, but I can also use it on other parts of my body, like my shoulders, elbows, and arms, where the dry skin seems to be getting worse.
After that, in the morning, I use a daytime moisturizer that has an SPF of 15. This is essential, as Erbitux skin is extremely sensitive to the sun. At night, I use a nighttime moisturizer, which is a bit thicker. I also apply an eye cream at night, as the skin around my eyes is very dry and will flake off if I don't apply a little extra love there. :)
At night, I use a shea butter lotion (it's really more like a thick cream) on both my hands and feet. Erbitux can and will cause dry, cracked skin, and the best way to combat that it using lotion....all the time. I actually carry two different lotions in my purse, and we have bottles of lotion in almost every single room in the house. I douse my feet in the thick cream at night, then cover them with aloe-infused socks to maintain the moisturizing effect. I have also used white, cotton gloves (found them at the pharmacy at CTCA) over a thick layer of cream. I am constantly using lotion on my torso, as the skin there seems to be permanently dry. It's not uncommon to see me in my house, slathering lotion on my skin before I go somewhere.
Most of the cracked skin I've gotten is on my thumbs, and it can be pretty painful, in the way that a well-placed paper cut can. I asked my docs about it - they recommended using super glue to hold the skin together. Believe it or not, it worked! I have a bottle of that sitting on my counter, and while my kids think I'm nuts, it totally works.
I talked about my dry scalp - it itches so much, and there is acne on my scalp, so my poor head is just insanely sensitive. No coloring my hair for a while, which is fine. I guess. :) I have gone through a bunch of shampoos and conditioners, and none of them really worked well. I talked with my naturopath about it, and he recommended Selsun Blue. I was skeptical, but guess what - it worked! The itching and sensitivity hasn't gone away completely, but it is definitely getting better. He also said that you can use it as a body wash....I tried that yesterday, and it did work.
What else? Oh - my make-up routine. I think this is important....as girls, we want to look pretty. I know that I wear make-up even on days when I am not leaving the house. I just feel better when I have some mascara and blush on. I've learned that that is just how I am. So, you can imagine that, with a bit of acne on my face, I am obsessed with wearing make-up.
I've learned that spending a little more on good make-up is worth it. The make-up lasts longer, is easier on your skin, and works better. I have tried several different brands, and I like MAC. This has been especially true with this rash. I went in, and the kind ladies there were more than happy to walk me through what products might work best. You can go in and for a fee, have a complete make-over, but I go in and ask for a specific item (say, foundation) and they are willing to help for just the cost of the products.
This time around, after all of my moisturizers, I use a make-up primer that has a bit of a tint in it. It helps even the skin tone out, and makes the foundation I use last longer. Now, as a foundation, I actually use a concealer. For my foundation. It's brilliant. It covers all of the redness and isn't heavy, which I really like. Is it unconventional? Yup. Does it work? You bet it does. I then use a foundation powder to set everything. After that, I go into whatever make-up I want to use for the day. I've found that, for the most part, this routine will last me from say 7am until I get ready for bed at 8pm. If I'm going out somewhere, I may touch-up with my powder foundation, but that's it.
I have found that using an eye shadow primer works well, too. The skin around my eyes is so dry that it will absorb the make-up, if I don't use a primer. Using the Painterly paint pot from MAC helps even the skin on my eyelids out, helps set the make-up, and also keeps my make-up from running, which I was having a wicked time with.
With regards to the overall issue of dry skin, there is one other thing that I have found helps. Oatmeal baths. Sitting in the warm (not hot - hot water dries the skin out...) bath, letting the oatmeal do it's thing, helps enormously. Don't rinse the oatmeal off when you get out, and try not to scrub your skin dry. That's good advice for your daily showering, too. Try to let the towel gently run the skin....scrubbing the skin dry will only overdry the skin and irritate it.
Let's see. I think that might be it. This drug, while well tolerated, is not easy to deal with. No, it doesn't make me nauseous, and it doesn't cause me to be down and out for days on end. For that, I am grateful. But, dealing with the rash, which gets worse over about a 2 month period then, hopefully, starts to calm down, is hard. It's difficult to see your body transform from something you know to a new, seemingly ugly place where you're forced to reside. As a woman, that can be more difficult than dealing with the nausea or headaches or vomiting. I know it has been for me. Does that make me arrogant or snooty? I don't think so. I hope not. I just know that, as a woman, how I look (or how I feel I look) can fundamentally effect my mood, my emotional stability, my entire day. Having to deal with cancer, then having to deal with a sudden, immediate onset of acne, dry skin, and tender scalp can be overwhelming.
Talk with your doctor. Ask him to help you with some preventive meds to help with the onslaught of acne. Check online with some of the amazing organizations that can connect you with others that are dealing with this medication. Try to find a "Look Good Feel Better" meeting through the American Cancer Society. Spend a little time (and maybe ask for gift cards for make-up) and learn some new make-up techniques.
And, remember. No matter what - you are beautiful. Your family and friends love you....acne and all.
Comments:
drj said...
Thank
you SO much for this post! I just started Erbitux for the first time last week,
and guidance on what makeup worked for others was exactly what I was looking
for! I am making a list on MAC cosmestics right now!
Thanks again. :)
Thanks again. :)
March
15, 2014 at 5:32 PM
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