Well, I really hoped this wouldn’t be the case, but the combo therapy failed me. Although my brain has remained stable (which is no mean feat), I’m having lots of progression in bone, and some in liver and lymph nodes. I’m pretty disappointed and so is #BestDocEver–we both had high hopes for this treatment, and given the long list of side effects I’ve had on it, it’s a blow to realize that I put up with all that with no benefit.
What’s come out of this for #BestDocEver and me is a belief that traditional breast cancer drugs will never work on my bizarre rare neuroendocrine breast cancer. Literally every breast cancer drug I’ve been on has failed me, and the only ones that have given me any benefit are ones used on neuroendocrine cancers. So, we’re done with treating my cancer with breast cancer drugs. From now on, I am a neuroendocrine cancer patient.
Since my genomic testing showed that crazy high TP53 mutational burden, we’re hoping to find me an experimental TP53 drug, either via a clinical trial or compassionate use. That’s going to take time, so in the meantime I’ll be starting on carboplatin with irinotecan, a neuroendocrine chemo combo. Whatever the side effects of it are, it can’t possibly be as bad as the combo therapy was.
Of course, there’s always a monkey wrench in the works, and in my case, it’s the flu. Because of course that’s what I need right now, influenza, amiright? It’s kicking my butt. I’m tired as hell and I have horrible coughing fits. So, we’ve had to postpone the start of the new chemo until next week. Everyone keep your fingers crossed that it goes away quickly!
I also want to say this: even though this combo didn’t work for me, I still believe that genomically-driven combination therapy is the future of cancer treatment. I’m still encouraging patients to get genomic testing, and to reach out to the folks at Avera about trying a combination therapy. Don’t let one failed treatment scare you off–remember how bizarre my cancer is, and how difficult to treat it’s been all along.
So, that’s the news. The little bit of hair I’ve got is going to fall out again soon, and if carbo does what it did in 2015, I’ll probably need a few blood transfusions. But hopefully it’ll keep things in check until I can get my hands on something better. That’s always the goal, right? Stay alive until you something better comes along.