Rashes with Tykerb, EGFR?

[vickie h]

Tomorrow I start on BIBW-2992, An EGFR that is similar to Tykerb and HKI-272 (being tested in phase III). Has anyone experienced the chest/face/upper back rash? I was told yesterday that I would definitely get the itchy rash (almost like teenage acne) all over my chest and face. Somehow, this seems worse than losing my hair did.
I would be grateful for any suggestions on what to put on this rash. I met a woman yesterday with pancreatic cancer, who is on an EGFR drug and she cannot go into the sun or put on any make-up. I was stressed out all night last night and hope that I am making the right decision. I am wondering now if I should have gone on Xeloda instead...... I have IIIb IBC, ER-PR-, HER2+++, diag, 2/04, 7 cm, mastectomy, 6 of 19 positive nodes, Taxotere, Taxol, Navelbine, Avastin, Herceptin, rads 2 times @ 33x each.
Love to you all, Vickie

[Sandy H]

Hi Vicki: I don't know what to tell you. I am on the Tykerb/Xeloda and did not get the rash. Perhaps, you need to ask your doctor what you can or should use. If you can not use makeup then I would be careful what I used. If you are 111b then you are inflammatory (IBC) has the doctor told you this? I would be interested in knowing more about your trial you are in. Where can I get more info on it? Sending you a hug for today. Sandy

[Grace]

Vicki, I had a rash on chest and face when I first started on herceptin, perhaps the reaction to tykerb is similar. It went away after the second or third infusion, but while I had the rash, I used over-the-counter cortisone and it helped a lot. And you may not get the rash. Also, for the sun you could try a strong sun block.

A small extra note. My tumor marker CA 27-29 went down for the first time in six months and that happened after I began taking 25 grams of flaxseed (ground first) in my cereal every morning. I was on herceptin for three months and the marker never moved. It's finally in normal range. Do I know it was the flaxseed that did it--not at all, but I'm not taking any chances either. Just had a flaxseed muffin with my tea and I've decided to stick with herceptin for another six months.

Good luck in making your decision.

[vickie h]

Thank you Grace, I will go to a dermatologist if I do get that rash. I started today on my new regime and I feel great so far. I was on Herceptin for 3 years and just got off 4 weeks ago. Good luck with your treatment and I send you best wishes, Vickie