Side effects of Tykerb

Barbara H. · 02-01-2010, 07:02 PM

The rashes I had at the beginning have disappeared, and I have not really had a problem with diarrhea, however I am dealing with more than the normal amount of gas. The greatest problem is that it wakes me up in the middle of the night with stomach cramps bad enough to keep me up. Walking around provides some relief, but the cramps do not let up when I stay in bed. Has anyone had this problem and solved it. I know I could go on a a total bland diet, but I don't consider it very healthy for the extended time hope to be on this drug.
Best regards,
Barbara H.

Sandra in GA · 02-02-2010, 08:38 AM

The bland diet did help me. I also had a lot of diarrhea. I understand how you feel about trading whole wheat bread for white bread and canned fruits for fresh. As soon as I came off the Tykerb, within three days, all the cramping and paiins were gone. Tykerb does have a short half life (24-48 hours), so it is out of you system quickly. I really never expected such a quick recovery. Those fresh veggies and fruits are all I crave now! Good luck and remember that in the scheme of things, a year is not too long. Good luck and lots of prayers.
Sandra

Jann · 03-29-2010, 03:45 PM

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. 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.)

Also, I had really bad mouth ulcers a month or two in, but this time (2nd type of chemo; first did not work) it seems to have cleared up after a month or two.

Barbara H. · 03-29-2010, 06:42 PM

My side effect was more like a rash. It has since disappeared. I do have more gas than usual, but my stomach pains during the night have resolved. I no longer deal with side effects, perhaps because I only take 4 tablets each morning. I continue to be pretty energetic, with no more fatigue than any of my friends who are not in treatment. I am tolerating the Herceptin/Tykerb very well and am also eating just about what I want. My markers are normal. Hopefully, I will continue to do well on this drug. I do dislike taking the pills in the morning, and occasionally having to wait to eat breakfast after I arrive at school. I am very upset by how many members we have lost during the past few months, and feel fortunate at the moments that I am doing so well. My first granddaughter was born on August 26th. She is now 7 months old and lives only ten minutes away. I never thought almost six years ago that I would live to enjoy a grandchild. Of course, now I yearn to be here even longer.
Best wishes,
Barbara H.

gourim · 04-01-2010, 01:35 PM

I had an itchy rash on my nose, chin, chest, back and arms. White heads would pop up at odd places, I had one on my thigh, one on my calf, and a few on my cheeks. I had problem with my stomach growling, it was a mild embarrasment esp at work...

other than these I had no side effects