Tykerb rash

Beckie · 07-19-2007, 06:35 PM

I've been on Tykerb for nearly 3 weeks now, and have had no problem with diarrhea at all. I do have a rash though. Just wanted to check it out with you. I got it on my forearms and calves just over a week ago when I was working outside on an overcast day. I figured it was sun sensitivity and have stayed out of the sun since. Now I am broken out on my stomach and behind, places that have not seen the light of day. This is a good thing, right? My face is still clear, though. Thanks for your input. God bless you all!

Beckie

Carolyns · 07-19-2007, 07:33 PM

Hi Beckie -

It sounds good that you are tolerating the Tykerb well. Rash is okay. I hear that it is a side effect of Tykerb although I did not get one. That said, my tumor markers are down and the last PET (a week ago) after two months on Tykerb looks good. If I were you I would show the rash to my doctor at the next appointment anyway.

Take care,

Carolyn

Shell · 07-20-2007, 09:40 AM

My doctor was very excited when I got the rash, also on my buttocks, etc. I didn't have the heard to tell him that when my husband got it, it was probably due to our hottub not being changed after we let jr high girls in it!!

The rash is good...

Kind regards,

Lolly · 07-20-2007, 05:52 PM

Beckie, after a week or so on Tykerb I had "the rash" on my face & neck, right shoulder and upper arm, across my upper back and a few spots on my left upper arm. Maybe a few spots on my stomach, can't remember for sure. It started clearing up by the 5th or 6th week, and was never painful or itchy, just a bit uncomfortable.
I do know some from here didn't have the rash and are having a good response to Tykerb anyway, so don't worry if it doesn't get "worse"!

<3 Lolly

awjkej · 08-06-2007, 11:58 AM

Hi Ladies,

I haven't posted here in awhile, but someone on breastcancer.org told me that there was a good tykerb/xeloda thread here :-).

I am in my first round of tykerb/xeloda. 3300mg xeloda, 1250mg tykerb. 2 weeks on, 1 week off. I am on my week off of xeloda right now.

I have a rash on my forearms and my chest that itches constatly. I also have, on my face, a rash which is centered on my nose and around my mouth. It is annoying, painful, itchy. The rest of the side effects are there but nothing I can't handle. The rash on my face is quite ugly, but I could deal with it if it didn't hurt so much. I am using the Udderly Smooth Udder cream and am also taking benedryl to help with the itching/pain. This seems to be working alittle bit.

I just spoke with my oncologist and he wants me to be off of tykerb for a few days til I see him this Thursday. He said that we would discuss what to do next at that time.

I have a pretty high tolerance for pain, and don't have pity parties as a rule but for some reason this is overwhelming for me ... ugh! Right now I don't know whether to stick it out for awhile, and see if it clears up, or if I need to be looking at different options.

Thanks for listening,

Anne

Esther · 08-06-2007, 12:42 PM

Anne:

My onc gave me a prescription lotion to put on the rash and it helped alot to clear it up and take care of the itching.

Scratching just seems to make it worse. I also used hydrocortizone ointment and it seemed to help the itching.

My rash cleared up after about 6 weeks or so and has not come back.

awjkej · 08-06-2007, 01:03 PM

Hi Esther,

Thanks! Do you know what the prescription lotion is called??? I stay away from the scratching as you said it only irritates it.

Anne

Esther · 08-07-2007, 01:31 AM

Anne:

The prescription my onc gave me was for Clindamycin Phosphate Lotion, Topical suspension USP 1%.

That and hydrocortizone cream I got at Rite-Aid for the itching did the trick.

eric · 08-07-2007, 05:15 AM

In case anyone doesn't already know it, the rash is an EXCELLENT sign that the Tykerb will work well for you. Happy itching!
Eric

Sandy in Silicon Valley · 08-25-2007, 06:18 AM

Newbie here: Have been on Tykerb continuously for 6 weeks. Slight rash started around Week 2, but comes & goes - mostly a sprinkle of small whiteheads on my chin, some bumps on my chest. But the ITCHING (without rash!) is what's really getting to me - especially my scalp. I use iced gel packs, tied against the top of my head with a scarf, when it gets really bad. Have an Rx for Regenecare (aloe, lidocaine & collagen gel) that works well on chest, but is difficult to spread on scalp. Also tried a natural products salve, but it worked less well. Am going to get a colloidal oatmeal lotion (I think Aveeno makes one) to try. Scalp itching is the biggie discomfort.

"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard

Joy · 08-25-2007, 08:21 AM

I'm glad you shared cause I'm having similar stuff. And have been on it for about 10 weeks. I just try to think that it is still being aggressive, but today and yesterday the itcing is driving me a little crazy and I have had success with aveeno hydrocortisone cream. Of course the scalp thing is still a problem. Sometimes I feel like a monkey.

Daisypink · 08-27-2007, 01:05 PM

Hi

I am so glad i spotted this thread as i was going post about this.. i'm on the LEAP trial over here in England (very lucky to get it), Xeloda/Tykerb 2 weeks on 1 week off - tykerb continiuosly.. i've just completed cycle 3.. i'm on 3300mg of xeloda and 1250mg tykerb.

It seems i also have the Tykerb rash over the weekend.. it started off on my neck like a heat rash and it was itchy, now its dried up and it looks like eczema. I have little patches of it on my face and also on my scalp.. thats very sore.

I phoned my hospital and my oncologist has susggested i try putting the udderly smooth cream i have on it and take some piriton.. hope i'm doing right.. does anyone know if they reduce the dose because of this.. i hope not..

I just read that if you get the rash its a good sign that its working for you.. is this right?? how do we know this??

does anyone know??

Lots of love jakki
x

awjkej · 09-19-2007, 08:09 PM

Hi Jakki,

I experienced very similar side effects as you. The rash on my face was so bad and painful, that I went down to 1000mg from 1250mg and that worked. My arms and feet began to be very painful and sore, tender so I am now down to 750mg. I have to day though that the difference between the 1000 mg and the 750 mg is neglible, whereas the dropping to 1000mg made a huge difference.

I do the 3 week on 1 week off and 3300mg of xeloda.

My onc told me that tykerb is metabolized differently by each woman and that a liver enzyme cytochrome p450 is involved with the process. He said that some women are on 250 mg up to 1500mg depending on what they can tolerate. So it is my understanding that it isn't a one size fits all dosage for tykerb.

Hope this helps.
Anne