Stopping Tykerb
 

I have been taking tykerb for a week and have decided to stop it. The diahrea is so bad. Every time I eat something it goes right through me like a water faucet. Immodium does not help. I am so weak from this. I was taking it with Herceptin as a preventative. My Oncologist wasn't even sure I should do this but since I insisted, he agreed. I figure if my cancer comes back and I need to get on this, I will have to put up with the side effects. But right now it's just not worth it. Why put my body through this until I need it. ...sherryg683

Sherry, so sorry that your Tykerb side effects were so severe. I think you are going with your gut and making the right decision for you. You're right, if it became a life threatening issue, then we learn to live with certain side effects for the benefit.

You can keep the Tykerb in your back pocket until you really need it.

Sherry,
Wow - after you agonized over the decision and fought so hard for this! Maybe your body is giving you a sign that this is not the right time for you to be taking this drug. Enjoy life without those nasty side-effects, and keep that stuff in remission for another 20 of 30 years on just the Herceptin, okay?

Sherry,
I wasn't really sure if the severe (and I mean SEVERE) diarrhea I experienced was due to the tykerb. But based on your experience and others, I'm now sure that was it. DARN!!
Now I've decided to stay off it a little longer. My daughter and granddaughter arrived today from Buffalo and we're having a baby shower at my house on Sunday. Then next week, my husband and 93 year old Mom and I are going to Buffalo for my daughter's college graduation - on Mother's Day. I do not want to jeopardize either occasion with the most miserable side effects!
I'm so glad I found this website. Your input really helps me through a difficult time.
Unfortunately, I can't give up on the tykerb yet. Too much going on with mets. But I remain hopeful that I'll be able to get through the side effects and after a few weeks, I'll adjust to the drug. I never had any problem with Herceptin. I'm surprised that tykerb can upset your system so harshly.

Sherry, how are you feeling? Are things back to normal yet? Hope so.

<3 Lolly

I'm feeling back to my old self again after stopping the tykerb. The diahreah quite immediately. But just after those few day on it, i had all these little pimples pop up all over my face. They are just now going away. Figures, I would have all the side effects realated to it..lol. If I have to get on it for necessity, then I will just have to put up with it..but not now...sherryg683

Shery-

The diarhea can be severe, and you are wise to save it for when needed. Like muldoonmom I can't stop it now due to progresion of mets, but the immod seems to work for me...

Regards,

Sherry:

Another idea would be to take a smaller dosage of Tykerb, go from 5 pills to 3 pills a day.

The pimples would indicate that you are a good responder to it.

That's interesting about the pimples and being a good response. I must really respond to it because after just a few days it looked like I had splattered a powdered donut all over my face. I think I am going to just wait if I need it later, I know my oncologist is going to give me grief about getting off it because he joked about all the papers he had to sign to get me on it...lol..sherry