[ Anglais] What Strategies Can Patients Use to Help Treat Skin Irritations From Ibrutinib (Imbruvica)?

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Topics include: Managing Side Effects

Some patients disregard or feel uncomfortable discussing red bumps, rashes or pustules that develop after starting cancer treatment, but “skin issues are not trite,” says patient reporter Michele Nadeem-Baker. What strategies can people use to prevent or treat skin irritations from therapy? Watch now as Michele investigates the top skin side effects that may occur while using ibrutinib (Imbruvica). She also shares, from experience, simple yet effective at-home remedies to help others find relief from skin side effects.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Michele Nadeem-Baker:

Good day.  This is Michele Nadeem-Baker, and I'm your patient reporter on Patient Power.  And today I'm going to share with you some things that I have learned by being on ibrutinib (Imbruvica) on the top skin side effects that are brought on by ibrutinib.  Not everyone gets these side effects, but they're just side effects that I have gotten and that I have read about that a lot of other patients are getting, and I know that some of you have written to me and asked about when I would report on this.  So I'm here, and I'm also here to tell you I, by any means, am not a doctor, not an oncologist, not a dermatologist.  I'm just here to share what I have gone through in my own experiences and things that I have learned from my own oncological dermatologist. 

So today what I'm going to go over are the top side effects caused by ibrutinib for your skin, and I'm also going to give you some mitigation strategies that work for me in how to prevent some of this but also how to deal with it, how to treat it, and how you can move forward to not be scared about asking for help. 

What I really want to share with you is do not be afraid—I've read a study that patients are really afraid to tell their oncologist that they're bothered by breakouts or what they think are breakouts, by red bumps on their skin, white pustules.  There's all sort of things like rashes, but they don't things it's like—because it's not life-threatening they're afraid to tell their oncologist.  Let me be here to tell you, do not be afraid.  Share this information.  You don't know what it is.  I didn't know what it was.  I was afraid to say anything, because it's like oh, this is trite.  It is not trite.  When you look good, you feel good, you feel better.  There’s a reason there's a program called look and feel better. 

So first of all, I want to tell you, please tell your oncologist.  If you have a dermatologist, they might not know how to deal with what's happening to you from an ibrutinib side effects.  That is what I learned, and I'm going to share that with you now. 

So the top three skin side effects caused by ibrutinib that have been in studies through some of the various cancer hospitals, presented at ASH, the top ones are skin rash or what you think are hives.  The next one is going to be what you think is acne or rosacea, but in fact it's not.  I'll explain what that is during our broadcast today.  And, by the way, I encourage you to write in with questions you might have.  Maybe you're experiencing some things, maybe you have a question on something I'm going to share with you today.  Please, I encourage you to write in, and I will try to answer your question during this broadcast. 

And the last thing that's very common is something called petechiae, which I will also explain.  And there's one other thing that's happened to me, and I've read that it's very common with CLL patients and also with people on ibrutinib, and that is that you have a great reaction to mosquito bites or bug bites.  Instead of perhaps there are small little bumps that they become enlarged.  They're itchier.  They last longer.  This is all pretty common, so you're not alone on that either. 

So first, I'm going to start from the top and work our way down on all the things, all the wonderful fun things that ibrutinib is doing to us in addition to keeping us well.  The first would be on the scalp, itching scalp.  I don't know if any of you have just felt oh, my gosh, my scalp is itching, it's burning, I can't take it.  This is normal.  Well, it's not normal, but if you're on ibrutinib it can happen.  You should tell your doctor about this. 

But there is a very simple remedy if you're at home and it's itching and it's really—you know, you probably already have it in your house, and that's coconut oil.  Believe it or not, just rub it right in there like really get in there and the itching should go away.  Now, if the itching continues and it's more than just your scalp and it's like starting to continue on your body and you're starting to get like little red bumps that can start on your hands, on your feet, on your knees, on your ankles, any of your joints, these little red itchy bumps that you just can't stand it.  Like it just starts feeling like it's creeping all over you. 

That could be hives or a rash that's also caused by ibrutinib, and there's a very simple remedy for that.  And if you want to go whole hog and stop it in its midst, my dermatologist has suggested Benadryl.  You may sleep for days, but diphenhydramine (Benadryl) will stop it, and it's probably one of the more effective things out there.  What I think you should try first, or at least what my dermatologist has suggested to me, is first try a Zyrtec or an Allegra. 

If after a short while you still can't stand it, take—if you've taken a cetirizine (Zyrtec), take an fexofenadine (Allegra).  If you've taken Allegra, take a Zyrtec.  And there's one other thing that I just learned about from my dermatologist at Dana-Farber, and she said to try, if you've taken a Zyrtec, try taking a ranitidine (Zantac) with it.  For some reason even though Zantac, it's an acid reducer, this is the generic for it, for some reason that stops an enzyme in addition to, if I understand this correctly, in addition to the Zyrtec it is going to help address a different issue and stop those hives. 

There is one other thing that my dermatologist has given me for when this happens, and that is a topical.  I use this rash, hives, bug bites, and it's called clobetasol (Clobex).  It really has saved me.  Even today I just returned from Florida, and I realized I had some mosquito bites I didn't realize I had, and they really got inflamed in the evening.  And so I just lathered some of this right onto to them, and it had almost immediate relief.  They're still there.  I'll have to use it again, but these are just all some ideas of what you can try as you go through the wonderful world of ibrutinib side effects. 

The other thing to do so that you maybe can mitigate getting these itchies all over is you need to keep your skin really moist.  A lot of people have dry, flaky skin, and it can be anywhere on your body, but it's usually like your hands, your feet, your knees.  So if you're getting this, this is what a dermatologist suggests.  Only use soaps that are nondrying.  In other words, read the labels, get used to reading all labels.  Make sure there are no alcohol ingredients, because those are drying.  I learned that even lip balm can have alcohol in it.  So you just have to be really careful, because that will dry out your skin. And that's the last thing you want to do, because the ibrutinib is drying you as well. 

So you want to make sure, I call it basically the five things you have to look out for that you're not getting in your soap or your lotions or moisturizers.  You don't want anything that's exfoliating.  I know that there are a lot of products out there that exfoliate.  It's kind of a big thing these days, but you don't want anything that's exfoliating.  You don't want anything with the alcohol, as I said.  You don't want to have any fragrance in that lotion.  And the last thing you don't want anything drying. 

So if something has olive oil in it, shea butter, that's going to be a better bet than something that has a fragrance or some alcohol types of products or witch hazel.  Those would be not so good for you, because they're going to dry you out more. 

The other things to do, I have another sample of something I use that I really like, and it's—it doesn't have to be Eucerin, but something that has skin calming.  We have to make sure that we calm down our skin if it's inflamed, which makes sense.  You don't want anything that's irritating.  So something that's skin calming, and this happens to have oatmeal in it and this has also been suggested to me—oh, there I go in the right direction—so something that's calming versus irritating like an exfoliant is much better for you.  So that's for the skin all over your body. 

I would like to now concentrate on our faces, because that's what we see the world with first.  So for cleaning your face, again, nothing abrasive.  It's got to be really moisturizing.  Something that my dermatologist suggested along with a few other things is Albolene.  It's called a moisturizing cleanser.  It's very thick and gooey.  I'll show it to you.  I don't know if you can see that, but it's really, really thick and gooey.  And it's very gentle, and it's really cheap, which is really good too.  It's a nice benefit. 

So you would put this on.  It even takes off—for any of you who wear eye makeup, gentlemen, I know many of you don't, but you put this all over your face and you tissue it off, and it's not abrasive, and it's not irritating.  It's gentle.  It feels moisturizing even, and that's great for your face. 

There are a few things you can use for moisturizing your face as suggested by my dermatologist, and that is—I guess this is one of the gold standard things by dermatologists, general dermatologists as well as oncology dermatologists, and that's Hydrolatum.  CeraVe is also one.  The CeraVe that comes in the pot.  And this is really thick, thick and gooey is the secret to today.  So it's just really, really thick, see, and you can use it everywhere, face, hands, arms, legs, body.  This stuff is great. 

There's another new product out that dermatologists are starting to get excited about that's also a moisturizer for the face, and I'm trying to find the name of it here.  It's called Lipikar AP balm.  So balm is another word that gives a hint that something is thick and gooey, and it would be really good for keeping the moisture in.  Can you tell I've been researching all this?  I really like all this. 

So what happens with the face, and I'm going to show you some pictures of myself as a guinea pig here, but I don't know if this has happened to any of you.  Please let us know if it has.  So do you see these red spots, and I don't know if you can see on some of this there are some white spots.  Very pretty I know.  Not really.  This is like one of my worst-looking days. 

So I went through a journey about getting this diagnosed.  So ibrutinib has not been on the market that long for front?line treatment.  As a matter of fact, it was only approved in mid to late 2015.  They're still learning what this does for side effects like on the skin.  So when I first went and said, listen, I have all these red spots, basically I was told it was nothing, maybe adult acne.  I went to my general dermatologist, because at that time I didn't know that there were specialized dermatologists in oncology, and she thought that perhaps it was rosacea and gave me treatment for that, things like clindamycin (Cleocin T) and a few other things, which actually irritated it more, because it is not rosacea, and it is not acne. 

So terms that you'll hear frequently in the treatment of this are papules, which are the red bumps, and pustules, which are these white things that I have the arrows pointing to.  They're called pustules, because they have, eek, pus, or they're draining.  So that's something that you'll be hearing if you go to see a dermatologist.  If they mention that, pustule or papule, those are what they are, and they're treated—and I'll show you what they're treated with, they're treated by a few things here.  Doxycycline, which is taken orally, and again this is what my dermatologist suggests, but Doxycycline is used and usually in greater amounts in the beginning in twice a day, and as things get better and calm down then you're cut back in dosage. 

Another thing that is used is hydrocortisone cream, but that's only used for the first week or so when you're trying to calm down the redness.  So that would be a hydrocortisone (Cortaid).  And then I'm going, which some dermatologists recommend, it's something that is similar to what is used for rosacea, just one of the products that's very different.  It's not a gel, it's a cream.  And I know I'm going to really not say this name correctly, but it's metronidazole (Metrogel), I think.  It's not Metrogel.  It's a cousin of Metrogel in that this is a cream.  The gel does nothing.  At least it didn't for me.  And the cream is kinda nicer to use anyway. 

So those are a lot of things for this type of stuff going on.  Gentle soap, gentle moisturizer but that's very emollient, and if it's really bad and flared your dermatologist may suggest one of these things.  There is a lot to share with you, but I know that we're running short on time.  I'm going to give you a few of my other go-tos. 

Biotin, a lot of dermatologist people have written in to me via Patient Power that they've heard to use biotin.  You have to use it in massive amounts.  Personally, I take at least 20 milligrams a day.  This is going to strengthen your nails.  It's going to be good for your hair if your hair has gotten weak.  Mine has thinned out a bit from ibrutinib.  I'm lucky, I still have it. 

Another thing for nails that's really good that I have found, this is my own personal thing, this helps with your cuticles, which are going to be really dry at times especially in the North in the winter.  It's just called, and this is going to sound crazy, it's called Healthy Hoof.  There's a reason this horsey is here.  And you just rub it in.  It's what—I know this sounds funny, but horse trainers use it on their horses’ hooves. 

Not to confuse you, but my dermatologist at Dana-Farber recently told me that because my feet are so dry to use Bag Balm.  So now you have the horse.  This is what they use in cow's udders.  So now I'm a horse hoof and I'm part cow I guess now, because I'm using Bag Balm on my feet.  But I'm really—I couldn't make this stuff up, fact is stranger than fiction.  So Bag Balm really helps if your feet are cracking, dry.  One other thing that helps with your feet is a product, any product containing 20 percent urea, because you have to break down the top layer of skin.  That really will help with your feet not being so dry. 

So I've taken you from the top of your head and your scalp—excuse me, a tickle—to your face.  Hands, there's all sorts of things that we can use that we've used on our skin.  For nails themselves there will be special products.  If you have nails, like I have a couple that are pulling away from my skin, again, please tell your doctor about it. 

One of the best things you can do for yourselves is to first tell your oncologist that you're having problems.  Ask for a referral for a dermatologist that is understanding and specializes in oncology or partners with your oncologist.  If you're going to one of the top cancer centers they probably have some oncology dermatologists on staff.  That would be really the best thing for you to do. 

And there is really good news in this that I would love to share.  And some studies and even my dermatologist at Dana-Farber told me this.  If you're getting these skin reactions on yourself, on your skin, it really is a good sign, because that means that your ibrutinib is being effective.  You're having a better response than the average person, and you'll have a great survival time. 

So with that information and giving you the positive and the silver lining on your dermatology cloud from ibrutinib, this is Michelle Nadeem-Baker reporting for Patient Power.  Thank you for joining me today.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on September 4, 2019