HER2 Support Group Forums - View Single Post - Evidence Mounts on Heart Failure After Trastuzumab in Breast Cancer Survivors

Mandamoo · 09-06-2012, 11:35 PM

This has been an interesting thread to follow. I see positives and think that in the current climate both Greg and Phil are correct. It is also different in other countries.

As a patient with stage 4 disease, I have to find treatments within the current system - I can't wait for the culture to change to personalised medicine so I need new treatments to be approved and studied to enable access to options.

So, TDM1 had an impact for 40% (my understanding is this 40% includes partial and complete response), the number kept stable I am not sure of. I believe now that the survival endpoint has also been reached. For me, I've tried to access personalised medicine here in Australia and got very limited results so far (politics yet again) seeing this type of research being stymied by authorities. I was one of those women for whom anthracyclines were useless for and thus progressed from 2b to 4 within months during intensive horrible treatment. So I would sure like to see treatment tailored to the individual but for now I am willing to take my chances on something even if it is effective in 1% - that might be me - I just want the chance to give it a go. As I see it I could die taking it and sure as hell I could die not taking it.

As for the Tykerb - Herceptin debate - surely there is room for both and again this depends upon the individual and I wonder why more research and trials are not happening with Tykerb if it has this potential as a small molecule to cross the BBB and have less cardiotoxicity.

I am about to enter the Teresa trial - maybe I will get TDM1 - maybe I won't - if I draw control we are going to use Tykerb and Herceptin. In Australia these two drugs are not funded to be used together and I will have to pay fully for one of them, even on trial - this is a cost of $50000-$60000 a year.

So for now we have to do the best with what we have, within the current system and hope that knowledge, procedures and medications become more personalised in the future.
Thanks for debating this - it is interesting if somewhat frustrating.

09-06-2012, 11:35 PM	#19
Mandamoo Senior Member Join Date: Jul 2011 Location: Melbourne, Australia Posts: 432	Re: Evidence Mounts on Heart Failure After Trastuzumab in Breast Cancer Survivors This has been an interesting thread to follow. I see positives and think that in the current climate both Greg and Phil are correct. It is also different in other countries. As a patient with stage 4 disease, I have to find treatments within the current system - I can't wait for the culture to change to personalised medicine so I need new treatments to be approved and studied to enable access to options. So, TDM1 had an impact for 40% (my understanding is this 40% includes partial and complete response), the number kept stable I am not sure of. I believe now that the survival endpoint has also been reached. For me, I've tried to access personalised medicine here in Australia and got very limited results so far (politics yet again) seeing this type of research being stymied by authorities. I was one of those women for whom anthracyclines were useless for and thus progressed from 2b to 4 within months during intensive horrible treatment. So I would sure like to see treatment tailored to the individual but for now I am willing to take my chances on something even if it is effective in 1% - that might be me - I just want the chance to give it a go. As I see it I could die taking it and sure as hell I could die not taking it. As for the Tykerb - Herceptin debate - surely there is room for both and again this depends upon the individual and I wonder why more research and trials are not happening with Tykerb if it has this potential as a small molecule to cross the BBB and have less cardiotoxicity. I am about to enter the Teresa trial - maybe I will get TDM1 - maybe I won't - if I draw control we are going to use Tykerb and Herceptin. In Australia these two drugs are not funded to be used together and I will have to pay fully for one of them, even on trial - this is a cost of $50000-$60000 a year. So for now we have to do the best with what we have, within the current system and hope that knowledge, procedures and medications become more personalised in the future. Thanks for debating this - it is interesting if somewhat frustrating. __________________ Amanda xx 40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11 Wife to my wonderfully supportive husband of 17 years! 22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old (L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins. Fec3, Taxotere and herceptin2 - stopped due to secondary diagnosis June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy! September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing. January 2013 - herceptin, carboplatin and Perjeta (compassionate access) April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.