Mtngrl
06-15-2017, 02:05 PM
I was on Tykerb and Herceptin in 2012. I remember having diarrhea, but I also remember it being manageable with Imodium, and I think I eventually got used to it.
About a year ago I was on Kadcyla and Tykerb. The diarrhea was relentless and constant. After a pretty short time, and trying a dose reduction, my doctor and I threw in the towel.
Now I'm back on it because a lung biopsy and a Foundation One report show some evidence that I might be developing Herceptin resistance, and the tumor board thinks Tykerb/Lapatinib can fix that. I'm also getting Navelbine.
And there's that extensive, stubborn (painful, worrisome, constant) diarrhea again! After 4 doses at 1250 mg per day, I stopped the Tykerb for 4 days. When I went back on, the same day I started the second round of Navelbine, I began taking 1000 mg per day instead of 1250, and took 4 mg of Imodium at the same time, then again 4 hours later.
It's not perfect, but it's better. I also have some Lomotil that was prescribed last year. I alternate one tablet of Lomotil with one tablet of Imodium whenever I have abdominal pain and/or rumbling. I think raw vegetables exacerbate it, so I'm avoiding those. I take a probiotic supplement, and I eat yogurt.
My doctor left the decision up to me. I was willing to try again because I did eventually get used to it 5 years ago, and it seems to be the right drug for me at this time.
I have lung mets. I periodically test my O2 saturation with a little device that reads that plus pulse. My O2 and pulse numbers have been good. I'm sleeping pretty well. In short, there's reason to think this drug combination is a good one for me.
I'm posting this in case it helps someone else who's trying to do Tykerb/Lapatinib. I will let you know what the next scan shows.
About a year ago I was on Kadcyla and Tykerb. The diarrhea was relentless and constant. After a pretty short time, and trying a dose reduction, my doctor and I threw in the towel.
Now I'm back on it because a lung biopsy and a Foundation One report show some evidence that I might be developing Herceptin resistance, and the tumor board thinks Tykerb/Lapatinib can fix that. I'm also getting Navelbine.
And there's that extensive, stubborn (painful, worrisome, constant) diarrhea again! After 4 doses at 1250 mg per day, I stopped the Tykerb for 4 days. When I went back on, the same day I started the second round of Navelbine, I began taking 1000 mg per day instead of 1250, and took 4 mg of Imodium at the same time, then again 4 hours later.
It's not perfect, but it's better. I also have some Lomotil that was prescribed last year. I alternate one tablet of Lomotil with one tablet of Imodium whenever I have abdominal pain and/or rumbling. I think raw vegetables exacerbate it, so I'm avoiding those. I take a probiotic supplement, and I eat yogurt.
My doctor left the decision up to me. I was willing to try again because I did eventually get used to it 5 years ago, and it seems to be the right drug for me at this time.
I have lung mets. I periodically test my O2 saturation with a little device that reads that plus pulse. My O2 and pulse numbers have been good. I'm sleeping pretty well. In short, there's reason to think this drug combination is a good one for me.
I'm posting this in case it helps someone else who's trying to do Tykerb/Lapatinib. I will let you know what the next scan shows.