tykerb - success without rash?
 

I'm wondering if anyone has had success on Tykerb without a rash?

I have been worried about that also. I had a rash on my face with Herceptin but nothing with Lapatinib. I believe everyone reacts differently. And side effects are not normally definitive signs of effectiveness.

Hi,

I asked my Dr. that question because I got the rash on the placebo but not with the real thing. I started taking Tykerb almost a month ago and no rash...go figure. Anyway, she said it is ABSOLUTELY not true that you must have a rash to have effective treatment.

I was in a trial last year with Femara and a 50 /50 chance to get Lapatinib / Tykerb. I remember being so thrilled when I had the rash, then I found out last month that I was in the placebo arm...whoops, I guess that's why they call it placebo effect. Last month I was put on Tykerb (for sure) and I do not have a rash.

I can tell you that after 3 weeks my CA 15 3 has dropped for the first time in 6 months. It was steadily climbing about 10 points per month since I went off of Gemzar and switched to Faslodex. I will have scans in 4 weeks and let everyone know then the scan results.

I look forward to hearing others respond.

Thanks, Carolyn

Hi Eric

My onc also doesn't believe the no side effects/not working connection and she is one of the top docs in the country.

I've been on Tykerb/Avastin for 6 weeks and the most I could muster was a few pimples - and I was really trying! I just had scans last week which showed the cancer was completely STABLE (not bad for a "chemo-free" regime) and I expect even better results next time.

Remember, they stopped the Tykerb/Xeloda trials early because it was SO EFFECTIVE. This will be the case for you guys, too.

Maybe work on the diahhrea if that will make you feel better! On second thought....never mind!

Eric,

Thanks so much for asking the question. I have been on Tykerb for almost 3 weeks now and have had no issues at all and I was beginning to get nervous about that. The few replies here (thank you all!) have reduced my fears greatly.

Donna

I have been on Xeloda?Tykerb for about 6 weeks and have had some itching/rash but my onc lowered my dose on both and the rash is gone. She believes that you adjust the meds (everyone is sodifferent when it comes to chemo doses) so that the symptoms stay stable, but doeasn't believe you should experience severe symptoms, like diarhea or bad rashes. Hope this helps you and the best to you. Love, Vickie

Thanks to all. Caryn hasn't had any rash and the markers went up the first time but the doc suggested another 4 weeks. Caryn's anxiety prompted tumor markers a week earlier so we'll probably know on Monday. We're praying that the Tykerb/Xeloda is working well. I'll let you know.

Eric

Eric, I'm so hoping for great news on the markers for your wife. I'll be thinking it all day. I'm glad you started this thread too. I have so far found this to be quite tolerable (still a little early) and was worried about efficacy. My skin is drier and itchier and my face had some weird red rashy dry spots, which are already getting better. I just started my 2nd round of xeloda yesterday so I have been on tykerb for 3 weeks. I know xeloda pretty well and can tell the side effects are accumulating a bit. But, compared to what I was expecting (and again it is early) this has been easy. I think I'm more fatigued though, is Caryn? That is the part that drives me crazy.

Anyway good wishes to you both and thank you!

Hi Joy,

Caryn's definitely been fatigued. While I do believe that the treatment has been a playing a major role, I also believe her anxiety is contributing. I'm happy to hear that you're having an easy time with this tx and I pray that it's successful for both Caryn and you.

Eric

Eric and all, I have a friend at my treatment center who's on Tykerb plus Xeloda, and she's had none of the advertised side effects either, howerver her Stage IV Inflammatory BC is responding well; she's been on it for about 9 weeks now, so I think you have to give it some time to work and side effects are not necessary! Especially the pooterookis:)

<3 Lolly

pooterookis? :-)

I don't think you have to have the rash to indicate that Tykerb is working. In the clinical trials, the top responders had the rash, but patients without the rash were also showing positive results.