Tykerb Only

01-22-2010, 01:22 PM

I am new to this website.
I was diagnosed in January 2006 with Infiltrating DCIS, grade 3, Stage 1, ER/PR negative..HER2 positive...no lymph node's involved..9MM in diameter in right breast only.
Had lumpectomy...completed Chemo, radiation and one year of Herceptin in 2007
In January 2009 had recurrence in same breast...same diagnosis DCIS, grade 3, Stage 1...HER2 positive...5 mm in diameter.
Had right breast mastectomy February 2009...completed 8 sessions of Taxol.
I just began "Tykerb Only" in December 2009.. 5 tablets a day. About 3 1/2 weeks into taking Tykerb I developed a "bad" rash over my "whole" body. I was told to stop taking Tykerb.
I stopped taking Tykerb til rash was gone and am now getting ready to try this again at reduced dose (4 tablets) a day. I have read several messages regarding a rash but no one has mentioned a "whole" body rash. It also itched at times.
Has anyone experienced this type of rash? If so, how was it treated? Did you continue taking Tykerb or was it stopped altogether?
I am hoping the reduced dose will help alleviate this rash.
Thanks....Sharon

Joe · 01-22-2010, 05:24 PM

Sharon,
Who told you to stop taking Tykerb due to the rash. Generally a rash is an idication tht the Tykeb is working.

Regars
Joe

01-23-2010, 12:19 PM

Thank you Joe for your response.
I was concerned I was having an allergic reation to tykerb and called my oncology doctor who told me to stop.
I contacted another onocology doctor that I see for second opinions and was told sometimes if you stop and restart you may or may not experience this rash again. She also told me if my rash is severe to contact their cancer-therapy dermatologist.
My rash was really severe (all over my back, chest, abdomen, arms, legs and neck).
I am going to try a lower dose to see if the rash is as severe.
I have not read any other postings or comments from anyone that experienced this type of rash. Almost everyone I have read had a localized/mild rash.
If anyone has experienced a severe all over rash what did you do?
Did the rash eventually get less severe? Did they have to stop Tykerb altogether?
Thanks Sharon

yankeebikachic · 01-23-2010, 04:45 PM

My face chest and back had reacted to the tykerb/xeloda. I continued on with mine though, my onc just gave me some creme and actually, after a while I just got used to it. When I dropped the X and kept going with ty, I did get better. It is not so much on the face as before, chest is much better and back is too. I'm on 5 pills daily.
Beth

chinit0 · 01-31-2010, 06:32 PM

my mom is also on tykerb and herceptin. three days ago, she started experiencing rashes over her arms, hips, face and abdomen. she does doesn't have any on her back and neck. yesterday her face started to swell. the onc advised to stop temporarily the tykerb for 1 week and was given an anti-itch lotion.

yesterday, my mom's face started to swell. haven't read anything about the swelling face. does anyone here also experienced that? we will be seeing onc again today for the swelling.

thanks!

yankeebikachic · 02-01-2010, 05:30 AM

No, no swelling here, maybe she needs a lower dose. Can she take some benedryl?

michka · 02-01-2010, 05:52 AM

I had Tykerb alone for one year. 5 pills. After 2 weeks I had rashes all over my body and thought I was going to go nuts because of the itching. No swelling. But I held on and little by little, maybe 2 weeks later, my body got used to it and I only had rash on my face and then, a month later, only had a few red marks or white pimples from time to time around the nose until the end of the treatment. I know it is difficult. Ask your Onc for some kind of creme to get you past the first weeks. Michka

02-02-2010, 09:30 AM

Thanks to everyone who responded to my "rash" issue.
I am getting some minor repair to my breast reconcstruction next week and was advised to hold off restarting Tykerb until after this procedure.
I will hopefully restart by the end of February.
I will let you know if I experience this "all over" rash again and how it was handled.
Thanks again!!
Sharon

Nancy L · 02-02-2010, 09:44 PM

Sounds like you may have had hives. I got serious hives after only 5 days on Tykerb. Dr. Slamon orginally prescribed 1000mg per day but reduced my dosage to 750mg which I have been on for almost 1 year. No hives at this dosage---just a mild rash from time to time on the face.

chinit0 · 02-07-2010, 08:04 PM

my mom's swelling face is now gone after 4 days. currently she's on a break for lapatinib for 2 weeks and she'll continue to take it this friday. onc already lowered the dose from 1000mg to 750mg, will keep you posted about the other side effects but i really hope she won't experience the swelling again.

Jann · 03-29-2010, 03:57 PM

I did not have a whole-body rash, but it was quite severe.

And, I don't know how the doctors can call that "a rash"! I had on my nose, around my mouth and on my chin approximately 30-40 of the largest, ugliest whiteheads I've ever seen (and I had acne as a teen)! I would call that every teenager's worst nightmare or Acne From Hell, not "a rash"! I could not leave the house for a couple of weeks!

...until the antibiotic my doctor prescribe kicked in (Minocycline). I will be taking that as long as I take the Tykerb (6 a day). (And it left me with faint marks on my face, as well!)

The good news? The combination I took of Tykerb and Navelbine (simultaneously) left me NED after only two months. So, it was worth it! (And I continue to take it.)

P.S. As I recall, I was told that it is not really a rash (or acne) but a separation of cells or skin layers --- or something like that (I wish I could remember better, but ..."chemo brain" interferes). I was also told that it meant that the Tykerb was working, which turned out to be accurate!