I moved, but the DS-8201 stays

That drug. This is the volatile adolescent relationship I never had. I’ve been dose reduced and dose delayed multiple times; I have no idea how much drug I’ve actually had. My new center started me over at Cycle 1, so now I’ve really lost track. But the thing still works! Even my brain is stable. The side effects are brutal, and I think not discussed openly because the drug works so well and is so new, but the nausea and fatigue are unbelievable. I’ve never thrown up from a drug before this. I’ve got a carefully curated four-drug combo designed to control the nausea, and it’s shocking to me that it really takes that much, and honestly I’m a little surprised that after a decade, I haven’t adapted to regular doses of poison.

Two milestones passed since I last wrote. June 6 was ten years from my original diagnosis. I was living in Switzerland. The doctor who diagnosed me was honestly the only Swiss I met who was kind to me, and more importantly, she got me diagnosed. I was lying on a table after a breast ultrasound while the radiologist fought with her in German on the phone, right in front of me, about whether to perform a biopsy. I was 25, right? It was impossible. He was pissed but hung up the phone and did the goddamn biopsy. A week later, sitting across from my doctor in her office, I remember what she said, so gently. “You will require more treatment.” Okay. She told me it was cancer. When I didn’t burst into tears, she said, with some surprise, “You were expecting this?” Yes. I’d known, I’d always known. She called my boyfriend for me to tell him, to bring him in and talk to him. I couldn’t do it. I’ve never been able to tell anyone; I have my husband do it, always. July 8 was the anniversary of my surgery. I remember that morning vividly. It was the first time I’d seen the thermometer that you just hold to your forehead. I thought it was so cool. My boyfriend, now husband, and aunt were with me. We watched Lady Gaga perform on the Today show on the TV in the corner of the room. She looked so amazing that I got a platinum blond wig like hers and wore it around NYC when my hair fell out. The last thing I said to my husband as they were wheeling me away was, “I wish this weren’t happening.” I woke up and didn’t feel that different.

I forgot the anniversaries of both of these days, though they’d been fading in and out of my memory for a few weeks. They were so long ago, and it’s all so different now.

We moved to Palo Alto in June, and despite working in finance and living in Berkeley over a decade ago, somehow I’d never been here before we pulled up to the front door of our rented house. I cannot believe such a paradise exists. I can see the sun every day. (A marvel after Boston, Indiana, Sweden and Switzerland.) I bought a bike, an adorable little mint green e-bike, that I love and am using to go back and forth between my house and the hospital. If you see me on the road, please don’t hit me. My brain’s been irradiated, and I don’t quite trust my balance. I’m hoping this won’t end with an OS event.

So here I am, in a standoff with my bone marrow and soaking up the sun, ten years out from a diagnosis of metastatic IBC and two weeks from my 36th birthday. I am SO OLD.

Brain Mets at One Year

The one thing I said I would never do is whole brain radiation. Never, ever. That was the line. I was too scared of cognitive decline, that I wouldn’t be able to write, talk, walk or remember, and there is so much good stuff to remember.

I was diagnosed after going to the ER with a seizure that could be more gently characterized as episodes of visual changes. At intake, it was about 9 p.m. I insisted to the nurses and everyone who came by that I almost certainly had brain mets, but I still had to wait until after 3 a.m. for retinal detachment to be ruled out before they would put me on the list for an MRI. The ER was mobbed, and I spent the night on a stretcher in a hallway, using my coat as a blanket. I had an MRI the next morning, and while I was on the scanner I missed a call from my boss. Good remote employee that I am, this caused my heart to pound more than the impending test results. I kept muting and unmuting myself so he wouldn’t hear the sounds of the ER around me. This was actually the most surreal part of the day. The brain mets were known, as far as I was concerned; I didn’t know how I was going to explain them.

After the scan, they moved me out of a hallway and into an exam room, and some poor innocent ER resident came in and pulled my MRI up on a computer. I could see a handful of lesions, pretty big ones, but I couldn’t get a good look because the guy was clearly accustomed to looking at X-rays of fractures and lungs and not to scrolling through slices. So I didn’t see any of the other slices, but it seemed like the size of at least one of the lesions was pushing what could be managed with SRS, which as a treatment modality of course seemed comparably benign, and I’d have no objection to using it. I didn’t have a death wish with the brain mets, just an aversion to WBR.

They topped me up with Ativan and a massive dose of steroids and instructed me to go to my clinic, go straight there, right now, and I agreed. We stopped at the house so I could take a shower and put on makeup and change into nice clothes because I wasn’t facing The Institute looking like I’d just suffered a few hours of intermittent seizure activity then spent the night in a hallway before being told I had multiple brain mets.

The main thing I learned from that first meeting was that it was a lot more than three lesions. It was probably closer to a dozen. Hopefully that ER guy has since learned to scroll. When we were alone again, I told my husband that if they wouldn’t do SRS there, and we couldn’t find another institution to do it, and I couldn’t get tucatinib, that would be it. I was calling it.

I was ready for all of this, because I’d been having symptoms. The main one being confusion with bright lights at night; I couldn’t seem to see dimension when there were headlights and streetlamps competing for attention.

Why didn’t I say anything? Because it felt like only brain mets could, ahem, bring me down. I wasn’t having it.

Months earlier, I had bought ELO tickets for me and my father. My dad shaped my deep love for oldies and classic rock from when I was an infant, and I remember listening to Face the Music on his turntable when I was 8 or 9. He saw them live a couple of times in the 70s, but anyone who knows the band knows that Jeff Lynne’s not a never-ending tour guy, and I didn’t think I’d get a chance to see him in my lifetime. I was happy to take more or bigger mets in exchange for that night. What was I going to do, get a scan and start treatment and jeopardize the concert? I waited 10 years for the brain mets, but I’d been waiting for Jeff Lynne all my life.

It was so worth it. It was one of the best nights of my life. I think my dad feels the same. Of course I never told him that I was waiting out brain mets so we could have that time together.

This is going somewhere, as much as any of my anecdotes go anywhere. When I met my radiation oncologist, he told me WBR was my best option. Number of lesions aside, the size of the lesions alone was likely to cause so much fibrosis that I may suffer more symptoms than I was having already, and it would make follow-up challenging. All I asked about was the risk of cognitive decline. His answers were good, all of them. He had stories about patients who had better outcomes than I imagined to be possible. I started to consider WBR. He seemed worried that I wasn’t processing the rest of it, like the fact I had a little army of brain mets capsizing some essential brain function. You’ll lose your hair, he warned. He showed me the Paul Brown papers on hippocampal-sparing WBR in combination with memantine. WBR became the reasonable option.

It raised a question I’d never asked before in course of my treatment, because I was always so sure I would do well: what if I didn’t deteriorate?

I didn’t. A year out, and it’s like nothing happened. I compromised everywhere here, from when I reported the brain mets symptoms to the treatment itself. Maybe it cost me, and it could cost me more later (I’ve likely exhausted most options for further brain radiation). But I did what I wanted, and my brain and mobility and independence are intact. It reassures me whenever I think about it that I’m capable of staying true to myself when it counts.

This is not the kind of blog I usually write. Drugs and science are really the only things I want to talk about. But I wanted to tell this story so that other patients know good outcomes are possible. Think about where we were with HER2+ brain mets when I started, when even without the brain mets, I felt like I was on a precipice, always pushing up against the limits of treatment. There was no space for risk. Waiting to see if Tykerb and Xeloda would be effective was one of the only times I ever felt like a patient. I didn’t know then how many rules I’d have to break to stay myself, to get what I needed.

Now it’s 2020, and I can’t even count the lines of therapy I’ve had. I just started DS-8201. We’ll check in on the HER2+ pipeline in a future entry.

Where did we leave off?

Was it the brain mets? We’ll start with the brain mets.

There were a bunch of them. A dozen? A couple were giant. I had whole brain radiation, which I always swore I wouldn’t do out of fear of cognitive decline. Six months out, I can still tie my shoes and spell my name, so I guess it’s turning out fine.

When the WBR was over, I did what any reasonable person with no access to tucatinib and looking to avoid the Maintenance Nerlynx would do: I hopped on a plane to Germany. (Before you judge me for my rash leap to dangerous, unproven treatments administered in rogue foreign clinics, rake Pubmed for some rigorous efficacy data on FDA-approved brain mets interventions. I’ll wait.)

One of the reasons I was excited to come back to the blog was so I could tell this story. My German doctor almost made me cry the day I met him, in the most unexpected way.

He was walking me through treatment options in his office, some EMA-licensed, some not, many occupying a regulatory gray area for which we don’t really have a U.S. analogue. The rules around the manufacture and administration of these treatments seemed a little vague, and my worry was that the treatments themselves would end up supply-constrained (what would be more frustrating than having one dose of a treatment and then never being able to secure a follow-up dose?), or that the clinic itself would be shuttered for some nonsense violation, and I’d lose access that way. Note that I wasn’t worried about safety, which is a fun consequence of the brain mets. What can hurt me now but being afraid?

My doctor assured me that it wouldn’t be a problem. He elaborated, and some of this (particularly the legal circumstances and terminology) may have been lost in translation, but the gist of it was this:

There was a court case in Germany where a physician was charged with murder for falsifying lab results and other medical records for a patient in need of an organ transplant, making the patient appear sicker than he was. For this reason, the patient was moved up the transplant list and received the transplant while other patients awaiting organs died. The falsified documentation was uncovered, and the physician was charged and found guilty. On appeal, a higher court reversed the judgment, deciding that the doctor was responsible for his patient, not every sick person in Germany. This set a precedent that gave physicians a lot of latitude in patient care. He’d go on to add that it applied to unproven or unlicensed therapies if the doctor determined that the benefits outweighed the risks, which he made evident to me was a pretty low bar given the brain mets.

All I heard, loud and clear, was My only obligation is to you.

I almost burst into tears. What is this blog other than the hope that a doctor would say those words to me? I love trashing scummy companies as much as anybody, but why would any of this bother me so much if I weren’t clinging to that ideal? In that office, suddenly, my guard was down and I relaxed; I would try anything, pay anything, keep any secret, now and later and long after I’m gone (let my husband deal with that one; tell them the nachtkrapp got me), because for once the transparency existed where it mattered and not where it didn’t.

U.S. healthcare is programmed so this scene would never happen, and I would argue that the cost of that is trust. The physician-patient relationship is not a partnership, and it won’t be as long as we continue to cloak the reality that your doctor doesn’t always want what you want. This was not my first experience with ex-U.S. care, and I’m conflicted about those experiences; in the EU I received in many respects higher-quality, more pragmatic care than I could dream of in the U.S., but there was also some great frustration that an American adult who grew up in the candy store of U.S. healthcare can probably never reconcile. But that conversation, in that German clinic, was the clearest validation I’ve seen that the ideal is possible. It can be done. This is how you empower a patient.

My Experience with Liquid Biopsy

We know the narrative: liquid biopsy promises a safe, painless, non-invasive, less-costly method of interrogating tumor DNA to identify targeted therapies for patients who are not amenable to biopsy. Patients will have a real-time view into the resistance patterns of their disease (companies are promoting the idea that patients should have a biopsy after every line of therapy, which was never feasible with tissue biopsy) and be equipped to select treatments that are more likely to work.

All this from a couple vials of blood? Well. Not so fast. Continue reading “My Experience with Liquid Biopsy” →