DESTINY 04 trial (DS 8201 for HER2 low)

I'm in the middle of screening for this trial-- I have met their central lab analysis of my tissue sample and am, indeed, HER2 2+, so now for the rest of the hurdles.

I am looking for input from others who are or who have been on this trial for HER2 low. I'd be interested in hearing how you are doing? Are you on the DS8201 arm? And if you were on the SoC arm, and had progression, were you able to access the drug off-trial from the sponsor? Do you have ductal or lobular MBC? Where are your metastases?

And any other information that you can offer would be greatly appreciated.

I have scans, labs, appointments next week and the week after, and if all is OK, will start the trial in early January. I have had a very significant amount of progression in the last weeks and am concerned about delaying treatment for even a few weeks, but since my next non-trial treatment will be taxol, my onc thought it was very worth the extra week or just a bit to longer to see if I get randomized into the trial drug arm-- if not, I'll just get SoC taxol trough the trial (and pay a fortune, since the facility conducting the trial is out of network, so all scans, labs, Dr. appointments, etc, that are not covered by the trial will not be covered by my insurance, either....but it is very worth the expense for the chance at this drug. It's only money after all. I figure if I live long enough I'll gradually pay off my debt, and if I die with some medical debt, I have life insurance enough to cover it and still provide well for my daughter. So i'm trying not to let that be a part of my decision, although the last out--of-network trial I was just on cost me almost $1500 in only two months.

This will be the third trial in seven months for me...I'm really hoping something works soon. I have had so much progression this year that it is very sobering to contemplate another year with the same rate of spread...trying to stay positive and optimistic.

Thanks for any information, insight, suggestions anyone can offer.

Elizabeth