Don't want to give up TDM-1

[Debbie L.]

Lucy, I don't know the answers to your questions, nor do I have any experience with TDM-1. But I didn't want your post to go unanswered.

Where are you? Are you able to get a 2nd opinion consult from another provider?

Like you, I don't understand why your oncologist would not consider more TDM-1. Low platelets are a common side effect of TDM-1, and from what I've read and heard, it's almost always a transient thing and resolves on its own. Do you know if your platelets have returned to normal? I think some have had doses held (or reduced) while platelets recovered -- but unless other things are going on (elevated liver enzymes, for example), I don't think this side effect usually means stopping altogether, for those who are responding.

Can you let us know more about your situation and access to care? If you don't have the option to get a 2nd opinion, we could at least round up some evidence about how to manage low platelets, while continuing treatment.

Debbie Laxague

[Gee557]

Hi, I finished 17 rounds of TDM1 as part of an early stage breast cancer trial at Dana Farber. I recommend you call Dr. Burstein at Dana Farber Hospital in Boston, MA.