Tarceva rash

[SandraL]

Wow! Have I got one! All over my body and growing. And in my nose, and in my ears and in my scalp and so on. Just hundreds and hundreds of outbreaks, bright red spots all over. More acneish on my face. It was a bit amusing to begin with as I joked with my daughter about going through puberty with her. It isn't funny any more. It is painful, awful looking and terribly itchy.

I am using a good face cream and hydrocortosone cream in the bad spots.

I spoke to a med onc yesterday (mine is still on vacation) and she suggested I go off of tarceva for a few days to see if it settles down. Because it can't go on like this, I can't stand it much longer.

I have started an antibiotic for the rash and also for a bacterial infection (vaginal bleeding problem of last week, apparently not cancer related). Between the rash and the infection I am wiped right out and I do not feel like going anywhere except where duty absolutely calls.

Any tips for getting through the tough part of the rash?

thanks in advance for your help

Sandra

[Patti B]

(((((Sandra))))

So sorry about the rash, Sandra - and here I am still waiting for mine!!! Bet you wish you could give me a little bit of yours - and I would gladly do that for you, girlfriend.

Others I am sure will come along but I believe there is a cream (Clindomycin maybe) that some here have said works very well. It is prescription. And I have been told that stopping the Tarceva for a few days and then starting back up again really helps with the rash,too. Also, make sure that any products you use on your face or scalp contains NO alcohol as that dries our your skin more and the idea here is moisturize, moisturize, moisturize!!!

Hope it gets better real fast!!!

Hugs - Patti B.

[recce101]

Sandra!

I found Clindamycin 1% gel was very helpful on the red bumpy pustules (clears them up in a few days), but don't use it on the relatively normal skin in between the bumps, since it's very drying. Dab it on the pustules, let it dry for a while, then put your lotion on the smoother areas.

Yes, I say go off the Tarceva for a few days. I took a 3-day break, and there was a noticeable improvement after the first day. When I resumed after 3 days it never got as bad as before.

Good luck!

Ned

[sunnyside]

Sandra,

I think you're rash sounds a lot like mine. The scalp was the worst, for me. There were two nights when it took me 3+ hours to go to sleep and I had to keep moving an ice pack around on my head. I skipped one day (day 23) and started back on a lower dose (100 mg/d on day 24). My rash was already starting to calm down by then (I started Minocycline on day 20) and I dropped the dose because of diarrhea and nausea. If you're not on one of the tetracycline class (tetracycline, doxycycline, minocycline) drugs that would be the thing to do - it started helping within a day or two for me. I went off it for while after dropping the dose but the rash started to flare so I'm back on the Minocycline.

Targeted therapy my a#@.

[Connie B]

Sorry to hear this Sandra. BUMMER!!! I do want to encourage you and share with you to maybe use that SEARCH BUTTON on the top of each page here at LCSC.

If you click on Search and type in Tarceva you'll get 1000's of hits from members and caregivers as to what they did when they had the dreaded rash. It's an easy tool to use and it's an easy way to find more information if you don't hear enough from your thread.

Hope your feeling better soon. I know some of our inperson lung cancer support group members use to have the dreaded rash too, and in time it did get better and it did go away.

[shineladysue]

Sandra,

You make me feel itchy and miserable just to read about it. As others have said, the break is usually what the doctors reccomend. Sometimes, a break and then starting back at a lower dose will work. Sounds like you are experiencing a bit too much of a good thing. Definitely don't mess around if it affects your eyes. Sure hope it won't be long before you can get that rash under control.

Hugs,

Sue

[Wendy]

Sandy,

I can so sympathize with you and the rash. I think it is hard to explain to anyone that hasn't been touched by it! My husband one day caught me crying my eyes out because I looked like a 14 yr old and itched so bad - we ended up laughing about it.

You got some great tips to use the clindamyacin gel & moisturize everything.

I also liked to use Neutrogena dry scalp shampoo when my scalp was at its worst, it seemed to calm the itchyness at least for a little while. I also have used Aveeno moustirizing lotion with cooling menthol when my skin was really itchy. The menthol seemed to calm my skin.

I had pretty severe side effects when I took Iressa (before tarceva) . So when I started tarceva, my doc increased my dosage at 25mg intervals until I was up to the 150 mg level. I have bounced back and fourth from 150 to 100mg depending on the side effects.

I hope that you start feeling a little relief soon and that its working its magic on you too!

Wendy

[SandraL]

Thanks all for your support and good tips. I went off Tarceva for 3 days (doc said 2 but I snuck in 3). The rash has settled down significantly, particularly on my face which is where it was the most bothersome (and awful looking!). Ned, I looked at your list of posts at cancergrace and found some good information as well. In particular, a lotion called eucuriin which seems to be quite helpful. From the posts here and on cancergrace, it is clear that people really can suffer significantly from Tarceva side effects and they are a bit of a trick to manage. Up until I had my side effects all I read led me to believe it was going to be quite manageable!!! Well that sure was false hope! Oh well...have to deal with what we have to deal with to fight this damn disease.

I started Tarceva again yesterday so we will wait and see what happens. Hopefully it will not come back as bad. Am also continuing with doxycycline (am on that versus others as am allergic to pencillin).

Good Monday morning greetings to all on the board. Have a good week everyone.

Sandra

[jaminkw]

Sandra, I've been thinking of you alot lately and wanted to ask about your hair--did it stop falling out after your last treatment fiasco. Oh my, I guess that's the last thing on your mind now.

When I started chemo, I was in some kind of denial about when the faling hair would start and didn't have a wig on hand. I've read about this Tarceva thing and swear, if I ever go on it, I'll have all Ned's remedies on hand waiting for the side-effects. If it turned out I didn't need them so what? MORAL FOLKS--LETS BE PREPARED FOR THIS CR_P!

Judy in Key West

[SandraL]

Hi Judy and thanks for thinking of me. No my hair has not stopped falling out but it is thankfully taking it's sweet time in doing so and I started with a very thick head of it. I have no idea how this will shake out but am going on vacation in about a month and hope I still have some left. Or better yet maybe it will start growing again. But it has been a long time since I got off that drug (gemzar) and it is still insisting on falling out! I am pretty blue about it and other things but will soldier on. You are right Judy, all tlhis is total crap and then quite some...crap is actually a major understatement. Having a grumpy day I guess even though I am definitely feeling better than before the weekend. Need to smarten up.

Sandra