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Lori R · 09-27-2012, 05:41 AM

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

09-27-2012, 05:41 AM	#2
Lori R Senior Member Join Date: Jan 2008 Location: Evergreen, Colorado Posts: 454	Re: Started TDM1 clinical trial in Nashville 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 __________________ 2007 Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008 Feb-Complete 6 cycles- T&H- NED March - Continue - Herceptin Only April - Rads for 6 weeks 2009 Continue Herceptin - Continue NED April - Recurrance- 3 cm. Liver Met May - Cryosurgery June - November - Abraxane + Herceptin Aug - PET/CT - CTC = 0 Back to NED 2010 January - Continue NED July - Recurrance - 3 cm Liver Met CTC=1 August - Cryosurgery #2 August - November Navelbine November - Back to NED - End Navelbine 2011 Feb - Recur - 4 cm Liver Met - Same Left Lobe March Surgery it is -Couldn't get a clean margin July - Confirmed continued liver involvement August - Begin Herceptin + Tykerb October - Mixed results from H+T Add Abraxane + H + T - Nov - April 2012 January PET Scan - It's working!! April - Back to NED July - Recurrance August - Begin TDM-1 Trial (Taxol + TDM-1)