HER2 Support Group Forums - View Single Post - Help me! Compassionate use exceptions needed for trial drugs NOW

Barbara H. · 06-18-2009, 07:10 PM

I have been on the T-DM1 trial since September 07. I believe this drug has been in trials for about three years. I am currently on the weekly trial. I hope that it is approved soon, but unfortunately these drugs take a long time to be approved. I wish it were approved so that I could take a break from it for a few weeks.

I feel your frustration. Herceptin was available in 98 when I was first diagnosed. However, it was not available to me. I feel that Herceptin could have made a difference in keeping me from progessing to stage 4. When I recurred it was in my lungs, brain, liver, skin, and lymph nodes though out my body. After brain surgery I was only given Herceptin, and I was NED within two months. Unfortunately, it did spread to the bones 1 1/2 years later. I did do Navelbine for about 9 months and then took a vacation from Chemo until I went on the T-DM1 trial. It is still working for me.
I do hope that T-DM1 becomes more available soon.
Best regards,
Barbara H.

06-18-2009, 07:10 PM	#6
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	T-DM1 trial I have been on the T-DM1 trial since September 07. I believe this drug has been in trials for about three years. I am currently on the weekly trial. I hope that it is approved soon, but unfortunately these drugs take a long time to be approved. I wish it were approved so that I could take a break from it for a few weeks. I feel your frustration. Herceptin was available in 98 when I was first diagnosed. However, it was not available to me. I feel that Herceptin could have made a difference in keeping me from progessing to stage 4. When I recurred it was in my lungs, brain, liver, skin, and lymph nodes though out my body. After brain surgery I was only given Herceptin, and I was NED within two months. Unfortunately, it did spread to the bones 1 1/2 years later. I did do Navelbine for about 9 months and then took a vacation from Chemo until I went on the T-DM1 trial. It is still working for me. I do hope that T-DM1 becomes more available soon. Best regards, Barbara H.