[Cellomomof5]

Hi Nelly,

I've been on T-DM1 since May, and will finish my clinical trial of treatments in April.

My experience was that many of the side effects you mentioned lessened over time. My LFTs were so high initially that I had to have my dose knocked down at first, but after a few treatments they stabilized, and I was allowed to re-escalate the dose. They are still high, but have slowly dropped over the months.

My white cells & platelets are low, still. Some nosebleeds in winter, but not too much.

Headaches - only during the first week - better as the months have gone by.

Chest pain - only the first few treatments, then stopped.

Periods - non-issue - they stopped back with Adriamycin before I even started T-DM1.

No shedding. My hair seemed to be growing slowly at first, but it has sped up over the past couple of months.

Joint pain and muscle aches - this has been the most annoying for me, and the side effect that has not lessened over time. I take lots of Advil - particularly during the first week after a treatment.

Still, as Chrisy said, it sure beats regular chemo! I hope things improve for you.