Monthly Archives: October 2016

Cease-Fire Over, Let the Battle Begin

Cancer Battle Prep  My cancer has gone the way of the Syrian government and declared an end to the cease-fire. I got a call early yesterday morning from my oncologist, and it wasn’t to tell me he’d found a cure. My numbers are up. Way up. Rationale Liz said “Yippee! Clinical trials here we come!” Emotional Liz said “WTF?!?!?!??” So I hand her the keyboard and let her type.

I wait on the scheduler from his office to call to set up scans to see what’s really going on inside my body. Who was it who said “The waiting is the hardest part?” The scheduler is a nice person, but she doesn’t understand the anxiety involved in sitting by a phone that isn’t ringing. So as soon as I hang up with my doctor, I scrounge around the house for some chocolate bars awaiting Halloween, shove them in a postal mailer with a “thank you” note for being so prompt in scheduling my scans in pop it in the mail to her. Having been through this before, I know chocolate is a great motivator.

STRENGTH THROUGH STORY

In the meantime I rely on narrative medicine (which is actually a program Columbia University offers). In my case, though, it’s the story I choose to tell until I have evidence otherwise.
I tell myself these numbers are being driven up by a shrinking tumor that’s casting off dead proteins which are showing up in my blood counts. For proof, I point to the tender spots on my body, under my armpits, along my sides, up and down my arms where my lymph veins are heavy with dead cancer cells.
I remind myself about the doctor at the immunotherapy symposium who showed a slide of a liver scan of someone on an immunotherapy trial. Twelve weeks in to treatment, the liver had doubled in size making it look like the drugs weren’t working. Yet the patient said he felt healthy, good, energized. Sometimes healing looks like it’s getting worse before it gets better. That’s what gives our stories drama.
I tell myself I can actually feel the drugs working. If a bone could itch, that’s what it feels like. Itching is a sign of healing (at least that’s what my grandmother says. She’s 94, alive and kicking, so she must know a thing or two about it).
Despite having set a course for the future with an eye on clinical trials, I still want to believe these drugs are working and that I can coast, even if it’s for only a little while.

MAKING IT THROUGH THE DAY

Nonetheless, this is what I’ve been drafted into as a Breast Cancer Conscript. Numbers will dictate my life, but not my mind. I’ve put together a strategy for these occasions, one that life tested yesterday.
After the chocolate bars, I text a friend who has battled breast cancer three times. She is now cancer free. She knows what I’m going through. She also knows exactly what I need to hear: “It’s going to be OK.”

The second thing I do is email the clinical trials coordinator to update her. I explain that I’m really doing it to give myself a sense of control in a situation where I have none. She understands and writes back with the next steps I need to take.

Then I call my husband and my mother. They’re both my advocates, but they also are shaken by this kind of news, so I have to solidify myself first. It’s that whole oxygen mask falling from the ceiling cover your own mouth before moving on to others syndrome. I remind them both that we have a plan no matter what the outcome. When they hear that I’m upbeat, they relax a bit.

Then I email a cancer counselor who’s great for talking me in off the ledge or giving me ideas of what other patients in a similar position have done. With their permission, she often puts me in touch with them. I’ve made quite a few friends this way, several of whom were on my texting chain yesterday.

And this is where things started to fall apart. The battery charger for two laptops I have went dead, cutting off all email communication for the day. I was able to get an older, Windows XP computer up and running, despite being warned from my IT guys NOT to use it for trolling the Internet. This is an emergency though, so I hear nothing. Turns out, my counselor is on vacation but in a small working computer window, she gets back to me and we nail down a date.

The text to my friend who always tells me it’s OK goes astray, so I don’t get the thumbs up. Instead though, I get a cavalcade of texts from people who somehow intuitively know to check in with me. It’s a bit uncanny.  I tell them in Twitter-like responses about where I am in the cancer dance. Prayers start pouring in. There’s a brick under my foundation. I just might make it through the day.

My mother offers to take me to lunch where we pour over what we know, what we don’t know, worst case scenarios, next steps. It’s not all that bad and there’s a few times we actually laugh. I’ve made it halfway through the day.

Before my doctor signed off, he advised me to “keep doing what you’re doing.” So I make an effort to get to my running group, where I’m able to commune with several other woman battling their own affliction anathemas. On the way, I check back with my friend whose text was misdirected. She texts back that she can’t talk. She’s just leaving the dentist office. But she sends the obligatory “You’re going to be OK” and I smile just before I head out for the run. I’ve just about made it through the day.

The endorphins kick in about 10 minutes into a beautiful sunset which bleeds through the lacey, leafless tree silhouettes on the horizon  and even though I have to stop to walk a few times because I’m tired, I know I’ve made it through to another day.

 

Uncertainty Casts Grotesque Shadows

uncertainty-casts-grotesque-shadowsCancer has declared a stand-off. Not moving forward, not moving backward.
In some ways, this is the worst possible news. Had my numbers gone up, I’d be making appointments for scans, plotting my next move to enter a clinical trial.
Had my numbers gone down, I’d relax and coast. Get back to writing my novel and creating a new normal, instead of haunting medical research sites and online drug dictionaries.
Instead, my numbers stayed the same, holding me hostage in uncertainty. Rubbing my nose in my vulnerability.

When you’re feeling vulnerable, there are two roads you can take: Victimized Avenue or Pioneer Boulevard. Early on, I chose the Boulevard. But I have to admit, sometimes the Avenue appears like a shortcut, and I can’t help turning down it.

Yesterday I presented my clinical trials chart to my oncologist. He seemed impressed with the work I’d put into it. His practice is in the process of aligning with MD Anderson and will soon be offering that cancer research institution’s clinical trials. Four of my top five choices are MD Anderson trials.

My chart is in an Excel spreadsheet which can be hard to read on paper. So while I handed a copy to him, I also told him I’d email him a version. It would be easier to read and more importantly, easier to locate for a phone call he said he had with MD Anderson folks the next day. I grabbed a business card from his desk while he nodded earnestly.

When I got home, I went to email him the info, but his card didn’t have his email address. So I called his office. The receptionist told me she’s not allowed to give doctors’ email addresses out.  Her name is Anita. I’ve renamed her We Need A – as in we need a lot more like her. She mentioned that I could go online and find it.  I thanked her for the suggestion.

His email address isn’t online, but it wouldn’t take a third grader more than a blink to decode it based on the email addresses I could find. Within a few moments, I’d emailed him the chart.

But then I started to wander down the Avenue. Why hadn’t he told me about the email Cone of Silence? Why hadn’t he just been honest and either given it to me or offered me another solution? Was he just blowing smoke about the whole thing? Did he even have a phone call about clinical trials set up?!? Or the moment I left, did he just throw my chart in the trash and move on to the next patient? Most of all, mired in my vulnerability, I began to wonder, can I trust my quarterback to have my back?

Uncertainty casts grotesque shadows and the Avenue looks like a straight, well-paved road, before it veers off into ruts and potholes.  This part of the journey seems unbearable. My mind monkeys have taken the steering wheel while I dive in the back seat to subdue my nausea that’s intensified by the taste and stench of chemicals exuding from me, the result of drugs I’ve just been infused with. Drugs that may or may not be working and demand a lot from me in the meantime. Mind monkeys are poor drivers. It’s a wonder I ever give them the wheel. In my weakness, though, the offer of letting someone else drive is too tempting. I can’t resist. I hold my stomach as they careen over every bump and hole along the Avenue – and this far in, there are plenty. I pray we get back on the Boulevard soon, even though, at the moment, I’m not feeling much the pioneer.

This morning, I got an email reply from my doctor. A short thank you sent from his cell phone letting me know he’d received my info. It’s enough to make me park the car and wait until I’m feeling better to take back the steering wheel as we both head out onto the Boulevard.

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Compiling My Clinical Trial Playbook

I’m standing under the street light on the corner of Win and Win. I’m sure it casts a shadow behind me, but today I choose to look into the swath of light that shines ahead of me.
I got a call back from Serena who heads one of the clinical trials I’m interested in. Serena was easy-going and fun. It turns she’d transposed numbers from my first call – or I’d gone too fast – which is why she hadn’t responded quickly. She called right back after my second message.
Yes, the trial is open. Yes, I’ll qualify if the drugs I’m on aren’t working.  Yes, because it’s a clinical trial, it’s completely paid for. Yes, it’s as I understood it. They’ll biopsy my tumor, send it to a lab at MD Anderson in Texas to test if for more than 400 mutations (think: doors and windows the cancer cell has on it for the drugs to get into). If the tumor tests positive for any of them, then they have 24 different drugs to throw at it (I wouldn’t be on all 24, just the ones that will “unlock” the door or window they find for my T-cells to get in there and do their job to kill the cancer).
My next step, said Serena, is a CT scan to see what effect the drugs I’m on have had on the tumor. More importantly, it gives the trial folks a starting place where they can measure it and compare it so they know if their drugs are working.
She follows up by emailing me something called an Informed Consent, which I learned at the conference every trial must offer after you speak with them. It tells you in plain English what the trial is about, what’s expected of me, what’s expected of them. It tells me things like they’ll pay for the treatment and in exchange, everything I undergo as part of it, I have to do through their medical team, that I have to let them know right away about side effects so they can respond, that I can jump out of it at any time and that I can always go back to standard treatment (think FDA approved drugs) if I choose and that even though we’ve had this phone call and I have this form, it doesn’t mean we’re moving forward just yet. The consent form is several pages long, but easy to read and understand and I feel much better about the whole thing having it. Somehow it makes me feel like I’m moving forward.
In the meantime, I am putting together a chart in Excel listing all 20 of the trials I am eligible for (I’ve found a half dozen more since the conference). I’m ranking them in the order of most appealing to least. It’s time consuming because the description of each trial is mind-boggling. I have to look up each drug they’re testing to see what it does, what it targets (is it my immune system or the cancer cell? What will it do to it? What side effects might I have because of it?)
Gratefully the National Cancer Institute has an online dictionary that I can plug each drug name or number into. It takes a bit of fiddling, but I don’t give up until I understand it. Then I write a sentence synopsis in my chart about the drug and what it will do. In another column I list where the trial is being held, in another column who is sponsoring it (is it a drug company? A research company? A hospital?). I don’t know if this is important, but it might be a factor worth weighing in on later, so I add it. I have a column for next steps (like the scan or another biopsy or a blood draw or a mouth swab). It’s amazing the different ways they can retrieve cancer cells from the body. I have a column for the type of study – whether it’s a Phase 1, 2 or 3 or just a research trial. Phase 1 trials are searching for tolerable doses of the drug. Phase 2 looks to see how effective the drug is. Phase 3 hones it down even further. Many drugs today are so effective that they’re receiving FDA approval during Phase 2.  Still, as a patient, it’s important to know what I’m signing on for. Phase 1 studies are bigger and will take in more patients, but as they’re looking for tolerable dosages, there’s a good likelihood there will be side effects. That’s usually the trigger point when researchers say “OK, enough. We’ve found the right dosage.” This is a conversation we’ll elaborate on once I’ve been accepted into the study, so I’m only concerned about it now as a way to narrow my choice on the best trial for me.

I’m looking at this chart as my new playbook. Here’s where we’re going if the drugs I’m on aren’t working or once they stop working (and they’re virtually guaranteed at some point to stop working). This feels empowering to me, like I’ve thrown in the Hail Mary pass for a running game.

I’ll see my doctor again in two weeks, where I’ll hand him our new playbook. The way I see it now, he’ll either tell me my numbers are dropping which means the drugs I’m on are starting to work and I can coast for a while, get back to my life. Get back to managing cancer rather than it managing me. That’s a win.

Or he’ll tell my my numbers are still rising, which means the cancer cells are changing quickly to adapt so the drug doesn’t kill them. Fast-changing cells are perfect targets for clinical trials and the drugs they’re testing. So it will be another win.

Which is how I’ve come to be standing under the street light on the corner of Win and Win, changing my outlook so I’m no longer focusing on the shadows being cast behind me, but the brightness that’s in front of me. For now, it’s a great place to be.

 

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Cancer’s Brave New World is Looking for Recruits

I made the call. That was the first step. No one answered, of course.
So I called again today. And now that I’m beyond the fear, I’ll call again tomorrow.
It’s for a local clinical trial. The gist: Doctors will biopsy my tumor and study the cancer cell for its mutations, looking for doors and windows that my immune system can penetrate to kill it. They’ll give me drugs to amp up my immune system so it’s angry and vicious and looking for cancer blood.
At the Cancer Research Institute Immunotherapy Patient Summit I went to last weekend, they said only 3 to 6 percent of people eligible for clinical trials pursue them. In the past, that was no big deal. A Phase 1 trial, the first of three the FDA normally requires before giving a drug approval, might have only needed a dozen or so people to figure out the dosage needed to kill a cancer.
Today, though, they’re looking for teems of people. And instead of targeting just one type of cancer, these drugs are targeting the immune system which goes after any cancer in the body, so virtually anyone with metastatic cancer – meaning it’s spread to other parts of the body – is eligible.
Making the call means pushing past the fear of the unknown. My oncologist has a Chinese food menu of options for me that are tried and true – not to cure it, but that will contain it. When one stops working, we go to column B and choose the next one. But a clinical trial? That’s no man’s land. Unchartered territory. The great unknown.
Brian Brewer of the Cancer Research Institute assures me that the research is there. That these drugs can be so powerfully effective, they’re gaining FDA approval halfway through Phase 2 testing.
But it doesn’t mean they don’t have side effects. Immunotherapy works by supercharging your body’s killer T-cells, while removing cancer’s cloaking mechanism so the T-cells can find it and decimate it. It seems the body already knows how to kill cancer, it’s just that cancer is doing a great job of hiding from it.
A supercharged immune system, though, can at times go after healthy cells. And there can be life-threatening consequences if you don’t stay on top of it. Most of those side effects can be treated with steroids until the body calms down and the immune system finds its rhythm, researchers and patients on these drugs said at the conference. Still, it’s scary.
And even when these drugs work, researchers are learning those capricious cancer cells find new ways to cloak themselves, rendering the meds ineffective.
Researchers aren’t giving up, though. They’re taking blood draws and sucking out those new cancer cells, taking them apart again, seeing how they’ve changed, devising new ways of targeting them and injecting those new, vulnerable, modified cancer cells back into a person’s body so their immune system can find it again and kill it.
It’s all pretty incredible. And the more I learn, the greater my resolve, the lesser my fear, the stronger I become.
At this point, I don’t know who is more at risk: The clinical trial coordinator who seems to be ignoring my calls or the smug cancer cells who mock my T-cell, giggling and chortling as they say “No one’s home,” when my T-cell knocks.
Just wait. That’s all I have to say.