Tarceva Rash Question - 1260446

sherrys
Posts:212

I have been on 25 mg of Tarceva since July (I started at 150 14 months ago and had to continue to drop the dosage to the present 25 mg). My question is, why do the side effects come and go? Sometimes my rash will be almost gone and then all of a sudden it is very severe again. I am not changing anything. Does the fact that I continue to have severe side effects mean just that I am very sensitive to the drug itself or is there a correlation to the effectiveness of it as well? Thank you!

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Reply # - November 11, 2013, 06:31 PM

JimC
Posts: 2753

Sherry,

The fact that you continue to experience severe side effects (especially at such a reduced dose) certainly seems to indicate that you are very sensitive to the drug. I don't know why the side effects come and go, but that was my wife Liz's experience as well, although she remained at the full 150mm dosage. After a point, Dr. Lacouture gave her a script for Bactrim and left it up to her to decide when her rash was bad enough to require taking a round of the drug. After a while, the rash would flare up again.

For any long-term user of a targeted therapy such as Tarceva who has clear scans, it's impossible to know if you are cancer-free and no longer need the drug or if it is very effectively controlling your cancer. The only way to find out is to take a treatment break and see what happens, and quite understandably many patients are reluctant to do so.

JimC
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Reply # - November 12, 2013, 07:53 AM

sherrys
Posts: 212

Jim, thanks for your answer. I do have a script for minocycline and I have a topical gel as well to use when necessary. I get to the point that I also need to add benadryl for the swelling it causes. I was just curious as to if there was a reason for it.

I know that there's no way to tell if I'm cancer-free without a scan, but I was more curious I guess to know if the rash was always associated with the drug working or if the rash was just an indication that I am sensitive to it. Does that make sense? Not that it really matters - it is what it is. :)

Reply # - November 12, 2013, 08:22 PM

Dr West
Posts: 4735

The best answer/non-answer is that "we see this". I imagine it's related to the combination of daily dose with variation based on food interactions, possibly activities, "biorhythms", and other voodoo variables we don't understand well. But we see this.

-Dr. West

Reply # - November 13, 2013, 06:35 AM

sherrys
Posts: 212

Ahhh, so someone may have a voodoo doll that looks like me. That's the best explanation I've heard. :)

Thank you, Dr. West, for letting me know that it's "normal".

Reply # - November 13, 2013, 09:41 PM

Jazz
Posts: 279

Hi Sherry,

Yes, it's maddening. Let me just add that it seems that on subsequent rechallenges of Tarceva, side effects can also change or worsen. I have areas of rash now that I didn't have the first or second time around, areas that are similar to before, and effects that seem amplified (runny nose, irritated eyes), and almost make me wonder if it's just a continuation of Afatinib side effects. Alas, there's no answer and to this day, most dermatologists still are not up to speed on TKI skin issues.

So glad to hear you're doing well on 25mg - this might mean you'll be able to ride it out longer since you can possibly increase the dose later if necessary.

Cheers,
Jazz

Reply # - November 14, 2013, 04:39 PM

judys
Posts: 74

My short -2 1/2 month rechallenge of Tarceva reminded me why I was ready in 2011 to try something else after 3 1/2 years. Even though I knew to grease up my body several times a day and my hands constantly during the day if I was cooking, doing yard work etc I still had/have issues. And the runny nose - wastebaskets fill up quickly, tissues are in every pocket of pants, sweaters, coats. This I won't miss at all!

Reply # - November 14, 2013, 11:29 PM

laya d.
Posts: 714

Sherry:

If I am remembering correctly, my Mom's rash (which was minimal compared to others on Tarceva) had an ebb and flow to it as well. We never really could figure out why it came on and why it went away. She had the same experience with some of the other side effects (like the hot flashes, etc.).

xoxoxo,
Laya

Reply # - November 15, 2013, 07:31 AM

sherrys
Posts: 212

Thank you to everyone for sharing your experiences with Tarceva. It helps to know that it's considered normal. I really believe that I have every side effect at one time or another. When I have no rash, I worry that it quit working. When I have bone/joint pain, I assume I have bone mets. When I cough from the post nasal drip, I assume I have mets in my lungs. I tell my oncologist all of the time that the Tarceva is trying to kill me. lol

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