Anyone had T-DM1 trastuzumab emtansine (Kadcyla): What side effects?

Posted by terratta @terratta, Jan 4, 2025

Where their side effects with TDM1 therapy? If so , what side effects?

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I'm tagging a few members who have had treatment with T-DM1 trastuzumab emtansine (Kadcyla), like @zeerj @maggieb892 @boathouse @simondsa1, who can share their experiences.

@terratta, have you started Kadcyla? How are you doing?

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I experienced two side effects while on Kadcyla. One was quite simple and the other potentially more serious. I experienced some constipation when I started the treatment. I wasn't effected much because my diet was strong in fruits and vegetables, lots of fluids and fiber. I was able use my diet to keep the constipation at bay. I was very strick in maintaining a healthy eating style.

The other issue which requires close monitoring is the effect the chemo has on the liver. The liver enzymes can elevate beyond healthy levels. Mine did toward the end of my treatment. In fact I missed my last treatment because my number was one above the limit.

I hope that you will be closely monitored and keep in touch with your team at any changes in your condition.

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I just got my loading dose of Kadcyla. Epic diarrhea returned this morning at 4am. My presurgery chemo gave me diarrhea for months. I was hopefully it was gone and was told Kadcyla is well tolerated. Anyone else have the same experience?

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Profile picture for botterd @botterd

I just got my loading dose of Kadcyla. Epic diarrhea returned this morning at 4am. My presurgery chemo gave me diarrhea for months. I was hopefully it was gone and was told Kadcyla is well tolerated. Anyone else have the same experience?

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@botterd, sorry to hear you have/had a really bad bout of diarrhea. Is it ongoing or has it subsided?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@botterd, sorry to hear you have/had a really bad bout of diarrhea. Is it ongoing or has it subsided?

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@colleenyoung I got my last Taxol infusion around Thanksgiving and my last Phesgo injection around Christmas. As of today, mid March, I think the diarrhea has finally been resolved. I've had my 5th radiation treatment and will get my 2nd Kadcyla infusion next week. Hopefully the diarrhea will not return. Fingers crossed.

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Trastuzumab affected my heart, temporarily. My I Watch showed Afib for several weeks. And
I could feel my heart fluttering. I skipped one dose of the Trastuzumab and all went back to normal. Once i began Anastrozole, the problems resurfaced with Irregular heartbeats. My GP suggested I Stop the AI for 3 weeks and restart. And that worked!

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