Disclaimer
- this post might get graphic and gross. If you've just eaten or have a
weak disposition - you may want to skip this post. :)
In my search online for some information about Erbitux,I'm not finding anything that's really recent. I thought I would put my experiences with Erbitux out on the web, in the hopes that maybe, maybe, I can help another person who's searching for something.
When I found out that I would be moving from the Folfiri/Avastin regiment to Irinotecan/Erbitux, I was pretty stoked. No more pump, and the side effects from these two are supposed to be much less severe than the last regiment. So, I went into the first round wary of the one thing I have always heard about Erbitux - the rash.
If you do a google search of "Erbitux rash," the majority of the responses are from a few years ago. This was frustrating, because I was hoping to connect with folks currently going through treatment to see what's worked for them. While the information I found was somewhat helpful, it wasn't up-to-date. I know that, for me, a lot of things have changed since my first diagnosis, especially with how they help a patient deal with the side effects. So, not seeing much post-2009 was disheartening.
During my first infusion with Erbitux, I asked a ton of questions. Unfortunately, a lot of those questions didn't have any answers. How long will it take until I start to see the rash? Where will it show up first? How will we treat it? (This was easily answered - I asked for the most aggressive treatment, and I got it - an antibiotic and a topical medicine.)
I didn't expect to see the rash show up until well after I was back from NY. I had my first infusion with Erbitux on Tuesday, and started to see the rash appear by the weekend. By the following week, I had already gone to MAC Cosmetics for help, and by the following weekend (within 10 days of the infusion), I was in tears.
The physical change was so much more difficult than I expected. Aside from the fact that it happened much quicker than I expected, it was much more violent than I expected. In literally a few days, I went from a face that was almost completely clear to a face that was covered (especially on the nose/cheek area) with swollen, painful., infected, visible, 3-D pustules. Think the worst case of pimples and/or acne you had as a kid, and multiply it by ten. I'm serious. Aside from the visible effects, my face hurt. It hurt something awful. At the worst point, it literally hurt to talk.
And, the rash wasn't just on my face. Since the start, it has spread to my scalp (yes, all over my bald-ish head). Behind my ears. In my ears. On my neck. On my chest, back, arms. It's started to migrate further south (think, anywhere with skin and hair....yes....big fun). *sigh*
After more tears and a discussion with the doctor at CTCA, I started taking Aleve twice daily. This was to help with the inflammation and the pain. Between that and changing from the alcohol-based Clyndomycin to a steroid-based cream, I started to *feel* some relief. I wasn't seeing it - at all. Matter of fact, the visible rash was much worse. Make-up helped a little, but I still felt, well, ugly.
It dawned on me that it might help you to understand *why* this was happening. I know it helped me. My med-onc team explained it to me, but it wasn't until I heard the weekend doctor at CTCA explain it that it sunk in. Here is a good (very in-depth, wordy) article on the whys. In laymen's terms (or how I understand it....), Erbitux works by blocking an epidermal growth factor receptor (EGFR), which tells the cancer cells to stop multiplying/growing. It will also effect any other cells that also contain the EGFR (skin, hair follicles, etc.). From the article:
Epidermal growth factor receptor is normally expressed in the epidermis, sebaceous glands, and hair follicular epithelium, where it plays a number of important roles in the maintenance of normal skin health, including control of differentiation, protection against damage induced by ultraviolet radiation, inhibition of inflammation, and acceleration of wound healing.
Basically, Erbitux causes the skin to erupt in an acne-like rash, be much more sensitive to sunlight (hello, Phoenix in summer...), and to heal much more slowly.
Freaking. Awesome.
As I said, knowing the WHY seems to have helped me accept what I'm going through. Well, that and the reassurance that the amount of rash does, in fact, show that the chemo is working. I'm not saying it makes it any easier. It doesn't. But, it helps me accept it more easily. Usually.
The one thing that none of the on-line discussions talk about (nor, in all honesty, did any of my in-person discussions with my med-onc team cover) is the emotional toll something like this can take on a person. I can only speak from my personal experience. I'm not sure if everyone is going to react the way I did, or continue to.
I had been able to handle the emotions of this rediagnosis fairly well, I think. I've had rough times, and I've been able to get through them. I think that, given what we've faced, I've gotten through it as well as can be expected.. I dealt with shaving my head in the only way I knew how - I went out, got new (sassy) make-up and big earrings. I made it work for me.
Up until now, I've (for all intents and purposes) been able to avoid *looking* like a cancer patient. If you ask someone, a stereotypical "cancer patient" is bald, gaunt (or swollen), and they look ill. They might be pale, undone, unkempt, etc. I was able to avoid this, by maintaining who I am - makeup, earrings, clothing, etc. I was able to still look like me, just with much less hair. :)
This was, by far, absolutely the most difficult thing (emotionally) I have gone through. The loss of looking like ME was awful. To have the world see something that didn't reflect who I am was awful. I think I have a better understanding of how a breast cancer patient feels when they lose their breast(s) after a mastectomy. While I can't imagine what that kind of surgery must be like, I have a better understanding of how the loss of one of the things that makes you a woman can affect every single part of who you are.
I've cried. A lot since this Erbitux rash showed up. I've cried more in the past four weeks than I have since my re-diagnosis. I'm lucky - my care team at CTCA and my husband have seen me through most of the crying sessions. It's helped, more than I can tell you.
Levi has been absolutely amazing. When I shaved my head, I was worried about how that would affect his view of me. Didn't make a damn but of difference to him. When this rash started to show up, I really started to get scared. Why would a man be attracted to a woman who has no hair, is covered (head to torso) in acne, and is feeling so shitty about herself.
Why? Because he's an amazing man who loves his wife for the person she is, rather than how she looks.
I. Am. So. Lucky.
He has allowed me to feel absolutely comfortable at home. I walk around the house with no make-up. He has given me the strength and the confidence to be myself. I have gone to the gym several times without makeup. Would I be comfortable doing this without his help? Abso-freaking-lutely not.
So, am I completely comfortable with what I'm going through? Not at all. Am I getting better? Yes. Emotionally, I'm still fragile. I'm working with my therapist at CTCA to help work through the issues that are caused by this rash, as well as other issues that have come up. (That's another post...) I'm still learning how to make my outside appearance match the person that I know I am on the inside. I want to have my (blue) hair back. I want to have my clear complexion back. I want to have my sense of confidence back.
I'm working on those. But, in order to get there, I need to get through the next couple of rounds of Erbitux. I need to continue fighting, so that I can get to those goals, and others. I have so much I want to do. I just need to get there.
How am I getting through the now? Doxycycline (an oral antibiotic that needs to be taken with food, or it causes nausea). A fairly heavy steroid cream (the steroid is, apparently, fairly low-dosage). Clyndomycin lotion (not the alcohol-based stuff I was on originally, that stung like a bitch...). Aleve twice daily. A new skin regiment (let me know if you want specifics....my skin went from oily to dry in about three days....it sucked).
I can only hope, that by opening up this way, I can help someone else who's looking for some information. If I can do that, then (as has always been the case), it makes my journey seem that much easier and much more worth-while.
In my search online for some information about Erbitux,I'm not finding anything that's really recent. I thought I would put my experiences with Erbitux out on the web, in the hopes that maybe, maybe, I can help another person who's searching for something.
When I found out that I would be moving from the Folfiri/Avastin regiment to Irinotecan/Erbitux, I was pretty stoked. No more pump, and the side effects from these two are supposed to be much less severe than the last regiment. So, I went into the first round wary of the one thing I have always heard about Erbitux - the rash.
If you do a google search of "Erbitux rash," the majority of the responses are from a few years ago. This was frustrating, because I was hoping to connect with folks currently going through treatment to see what's worked for them. While the information I found was somewhat helpful, it wasn't up-to-date. I know that, for me, a lot of things have changed since my first diagnosis, especially with how they help a patient deal with the side effects. So, not seeing much post-2009 was disheartening.
During my first infusion with Erbitux, I asked a ton of questions. Unfortunately, a lot of those questions didn't have any answers. How long will it take until I start to see the rash? Where will it show up first? How will we treat it? (This was easily answered - I asked for the most aggressive treatment, and I got it - an antibiotic and a topical medicine.)
I didn't expect to see the rash show up until well after I was back from NY. I had my first infusion with Erbitux on Tuesday, and started to see the rash appear by the weekend. By the following week, I had already gone to MAC Cosmetics for help, and by the following weekend (within 10 days of the infusion), I was in tears.
The physical change was so much more difficult than I expected. Aside from the fact that it happened much quicker than I expected, it was much more violent than I expected. In literally a few days, I went from a face that was almost completely clear to a face that was covered (especially on the nose/cheek area) with swollen, painful., infected, visible, 3-D pustules. Think the worst case of pimples and/or acne you had as a kid, and multiply it by ten. I'm serious. Aside from the visible effects, my face hurt. It hurt something awful. At the worst point, it literally hurt to talk.
And, the rash wasn't just on my face. Since the start, it has spread to my scalp (yes, all over my bald-ish head). Behind my ears. In my ears. On my neck. On my chest, back, arms. It's started to migrate further south (think, anywhere with skin and hair....yes....big fun). *sigh*
After more tears and a discussion with the doctor at CTCA, I started taking Aleve twice daily. This was to help with the inflammation and the pain. Between that and changing from the alcohol-based Clyndomycin to a steroid-based cream, I started to *feel* some relief. I wasn't seeing it - at all. Matter of fact, the visible rash was much worse. Make-up helped a little, but I still felt, well, ugly.
It dawned on me that it might help you to understand *why* this was happening. I know it helped me. My med-onc team explained it to me, but it wasn't until I heard the weekend doctor at CTCA explain it that it sunk in. Here is a good (very in-depth, wordy) article on the whys. In laymen's terms (or how I understand it....), Erbitux works by blocking an epidermal growth factor receptor (EGFR), which tells the cancer cells to stop multiplying/growing. It will also effect any other cells that also contain the EGFR (skin, hair follicles, etc.). From the article:
Epidermal growth factor receptor is normally expressed in the epidermis, sebaceous glands, and hair follicular epithelium, where it plays a number of important roles in the maintenance of normal skin health, including control of differentiation, protection against damage induced by ultraviolet radiation, inhibition of inflammation, and acceleration of wound healing.
Basically, Erbitux causes the skin to erupt in an acne-like rash, be much more sensitive to sunlight (hello, Phoenix in summer...), and to heal much more slowly.
Freaking. Awesome.
As I said, knowing the WHY seems to have helped me accept what I'm going through. Well, that and the reassurance that the amount of rash does, in fact, show that the chemo is working. I'm not saying it makes it any easier. It doesn't. But, it helps me accept it more easily. Usually.
The one thing that none of the on-line discussions talk about (nor, in all honesty, did any of my in-person discussions with my med-onc team cover) is the emotional toll something like this can take on a person. I can only speak from my personal experience. I'm not sure if everyone is going to react the way I did, or continue to.
I had been able to handle the emotions of this rediagnosis fairly well, I think. I've had rough times, and I've been able to get through them. I think that, given what we've faced, I've gotten through it as well as can be expected.. I dealt with shaving my head in the only way I knew how - I went out, got new (sassy) make-up and big earrings. I made it work for me.
Up until now, I've (for all intents and purposes) been able to avoid *looking* like a cancer patient. If you ask someone, a stereotypical "cancer patient" is bald, gaunt (or swollen), and they look ill. They might be pale, undone, unkempt, etc. I was able to avoid this, by maintaining who I am - makeup, earrings, clothing, etc. I was able to still look like me, just with much less hair. :)
This was, by far, absolutely the most difficult thing (emotionally) I have gone through. The loss of looking like ME was awful. To have the world see something that didn't reflect who I am was awful. I think I have a better understanding of how a breast cancer patient feels when they lose their breast(s) after a mastectomy. While I can't imagine what that kind of surgery must be like, I have a better understanding of how the loss of one of the things that makes you a woman can affect every single part of who you are.
I've cried. A lot since this Erbitux rash showed up. I've cried more in the past four weeks than I have since my re-diagnosis. I'm lucky - my care team at CTCA and my husband have seen me through most of the crying sessions. It's helped, more than I can tell you.
Levi has been absolutely amazing. When I shaved my head, I was worried about how that would affect his view of me. Didn't make a damn but of difference to him. When this rash started to show up, I really started to get scared. Why would a man be attracted to a woman who has no hair, is covered (head to torso) in acne, and is feeling so shitty about herself.
Why? Because he's an amazing man who loves his wife for the person she is, rather than how she looks.
I. Am. So. Lucky.
He has allowed me to feel absolutely comfortable at home. I walk around the house with no make-up. He has given me the strength and the confidence to be myself. I have gone to the gym several times without makeup. Would I be comfortable doing this without his help? Abso-freaking-lutely not.
So, am I completely comfortable with what I'm going through? Not at all. Am I getting better? Yes. Emotionally, I'm still fragile. I'm working with my therapist at CTCA to help work through the issues that are caused by this rash, as well as other issues that have come up. (That's another post...) I'm still learning how to make my outside appearance match the person that I know I am on the inside. I want to have my (blue) hair back. I want to have my clear complexion back. I want to have my sense of confidence back.
I'm working on those. But, in order to get there, I need to get through the next couple of rounds of Erbitux. I need to continue fighting, so that I can get to those goals, and others. I have so much I want to do. I just need to get there.
How am I getting through the now? Doxycycline (an oral antibiotic that needs to be taken with food, or it causes nausea). A fairly heavy steroid cream (the steroid is, apparently, fairly low-dosage). Clyndomycin lotion (not the alcohol-based stuff I was on originally, that stung like a bitch...). Aleve twice daily. A new skin regiment (let me know if you want specifics....my skin went from oily to dry in about three days....it sucked).
I can only hope, that by opening up this way, I can help someone else who's looking for some information. If I can do that, then (as has always been the case), it makes my journey seem that much easier and much more worth-while.
Comment s:
Tina said...
This
is a great post Michelle. It brought tears to my eyes, both for you and what
you have to go through, and for the memory of what I felt when I lost my hair,
eyelashes, eyebrows, and a breast. With the colon cancer I looked great--I lost
weight, my face was thinner, my eyelashes grew longer. With the breast cancer I
looked like a cancer patient, and I hated it. I hated what it took from me.
I'm glad you are doing what you can to stay strong and continue to fight, even when it's so difficult. I love your ability to tackle your problems head on and deal with them. I have no doubt that you will kick this cancer's butt once again!
By the end of your post I was smiling, because it reminded me so much of the older posts of yours I used to read that helped me through those dark times of chemo. You are still inspiring me, and now helping another group of people get through their dark days. Bless you!
I'm glad you are doing what you can to stay strong and continue to fight, even when it's so difficult. I love your ability to tackle your problems head on and deal with them. I have no doubt that you will kick this cancer's butt once again!
By the end of your post I was smiling, because it reminded me so much of the older posts of yours I used to read that helped me through those dark times of chemo. You are still inspiring me, and now helping another group of people get through their dark days. Bless you!
July
11, 2012 at 7:42 AM
Ditto
to Tina's comments! I check your blog and FB page a couple times a day just to
see Whutz Up! You are indeed an inspiration to so many people. Me included.
July
11, 2012 at 8:07 AM
Thank
you so much for sharing your insight, information and experience. This. will.
help. someone else. (thank you Google). I will make a mental note of this
should the docs put my Mom on it.
July
13, 2012 at 9:52 AM
Michelle,
you are an extraordinary and a very strong woman. You have my support and you
are in my prayers.
You are not alone and even people who you don't know, like me, loves you.
Cheer up, girl!!!
You are not alone and even people who you don't know, like me, loves you.
Cheer up, girl!!!
July
25, 2012 at 7:10 PM
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