Started TDM1 clinical trial in Nashville

[ANelson]

Hey ladies
I just began a clinical trial for TDM1 in Nashville and had my first infusion on Sept 18. It has been two days of flu like symptoms and severe migraine headaches subsiding finally on Monday September 24 with the help of 2mg of steroids, which I reduced to 1 mg yesterday and didn't rake any today. Has anyone been told to take steroids? They really do a number on me with swelling me up and i have difficulty keeping still, that is why I am so cautious in the amount I take. They have seen an increase in my liver enzymes as well based on the labs that were completed yesterday. What other experiences have you all had on TDM1? Any suggestions? I am hoping this will be the answer to my prayers. Thanks in advance for your time.

Angie

[Lori R]

Hi Angie,
I am glad you were able to get into a TDM-1 trial and receive a chance to use this drug.
I too joined a trial involving Taxol + TDM-1 so at times I am not 100% certain which drug is driving the side effects. I receive Taxol weekly and the TDM-1 once every 3 weeks. The first TDM-1 treatment resulted in a similar flu like response. Chills, headache, nausea. But mine only lasted 1 day. (thank goodness...it was rough going)

When speaking with my Dr. prior to my 2nd treatment he prescribed steroids. 4 MG on friday night, 4 MG on saturday morning. I HATE taking unnecessary drugs, so based on my first experience, I skipped the friday night dose and did fine. I did take the full 4 MG on Saturday and did feel much better on Sunday as compared to the first treatment. For my 3rd treatment, I will probably bump back the Saturday dose to 2 mg.

Thank you for posting as you reaffirmed my gut instinct that I didn't need all the steroids prescribed.

There is another lengthy string titled TDM-1 Side Effects. I hope you can find it as it contains a lot of valuable information from many others.

Best of luck and here is hoping for TDM-1 miracles all around!!! Lori