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Barbara H. · 06-17-2012, 10:48 AM

Hi Michka,
My CT scans showed something that looked like ground glass in the lower section of my lungs. I had a biopsy that indicated inflammation. I then took high doses of steroids that helped but didn't allow me to sleep. Finally, I had to go off the trial. I was on a very early weekly trial that I stated in Sept. 2007 with a dose that was over all higher than the dose that one now receives every 3 weeks. TDM-1 put me into full remission and Herceptin/Tykerb is keeping there. I only had a fever and felt achy with my first infusion of TDM-1. After that, I had high levels that were tested for the liver and lower levels for the blood. As a result, I had to occasionally skip treatment. At this point everything they test for is normal. My biggest complaint of TDM-1 was that I had terrible nosebleeds with huge clots. They were annoying because I am a teacher.
I will be happy when TDM-1 becomes approved because it could be an option again if I need it as long as I am closely monitored.
Best,
Barbara H.

06-17-2012, 10:48 AM	#10
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	Re: TDM1 breathing/fatigue question Hi Michka, My CT scans showed something that looked like ground glass in the lower section of my lungs. I had a biopsy that indicated inflammation. I then took high doses of steroids that helped but didn't allow me to sleep. Finally, I had to go off the trial. I was on a very early weekly trial that I stated in Sept. 2007 with a dose that was over all higher than the dose that one now receives every 3 weeks. TDM-1 put me into full remission and Herceptin/Tykerb is keeping there. I only had a fever and felt achy with my first infusion of TDM-1. After that, I had high levels that were tested for the liver and lower levels for the blood. As a result, I had to occasionally skip treatment. At this point everything they test for is normal. My biggest complaint of TDM-1 was that I had terrible nosebleeds with huge clots. They were annoying because I am a teacher. I will be happy when TDM-1 becomes approved because it could be an option again if I need it as long as I am closely monitored. Best, Barbara H.