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Barbara H. · 05-23-2010, 11:33 AM

I highly suggest that you go on T-DM1. It was a miracle drug for me. I entered a phase 1 trial in Sept. 97. I had enough pain in my hip that I could not sleep for more than two hours at night. Within two days after my infusion the pain was gone. Unfortunately, I developed lung inflammation as a side effect and went off the drug last October. However, I am the only known case with this side effect. I only felt as if I had the flu after the first long day of infusion. Nevertheless, I had to be in school that evening for Curriculum night to conduct a program for my parents in my classroom. The next day I was fine. The only other side effect that I had were frequent nose bleeds. My liver enzymes also increased. That is normal for this drug. I loved this trial because it was really no different than taking Herceptin and I felt fine. I was NED the entire time I was on this drug. However, I can really only say that I don't have measurable disease, because the bones will always show that they have been affected. That is also true for any trauma they have experienced.

In spite of my side effect I could use this drug again once it is approved. I just have to be continually checked for lung side effect. I am currently on Tykerb and that is also working for me.

Feel free to check my posts over the past 2 1/2 years.

Good luck,
Barbara H.

05-23-2010, 11:33 AM	#2
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	Re: Roll call, advice, TDM1? I highly suggest that you go on T-DM1. It was a miracle drug for me. I entered a phase 1 trial in Sept. 97. I had enough pain in my hip that I could not sleep for more than two hours at night. Within two days after my infusion the pain was gone. Unfortunately, I developed lung inflammation as a side effect and went off the drug last October. However, I am the only known case with this side effect. I only felt as if I had the flu after the first long day of infusion. Nevertheless, I had to be in school that evening for Curriculum night to conduct a program for my parents in my classroom. The next day I was fine. The only other side effect that I had were frequent nose bleeds. My liver enzymes also increased. That is normal for this drug. I loved this trial because it was really no different than taking Herceptin and I felt fine. I was NED the entire time I was on this drug. However, I can really only say that I don't have measurable disease, because the bones will always show that they have been affected. That is also true for any trauma they have experienced. In spite of my side effect I could use this drug again once it is approved. I just have to be continually checked for lung side effect. I am currently on Tykerb and that is also working for me. Feel free to check my posts over the past 2 1/2 years. Good luck, Barbara H.