Tag Archives: clinical trials

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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Fourth and goal and in need of a win

cancer goalsIt’s early September, the beginning of the final quarter of the year, and I’m looking at where I am in accomplishing my goals.

This year’s goals were pretty much the same as last year’s: Finish my novel. Finish renovations on our 1860s home.  Complete a few side projects like faux graining a cabinet or putting a quilt applique on some threadbare bedding. I admit, I know nothing about the last two, which means there’s a learning curve involved that’s slowing me down. Truth is, there’s a learning curve to all of this.

My inbox is filled with advice, templates to download, steps to take to move me forward. Everyday I take time to read those emails or fill out the forms, put a plan together. For a week or two I even put the time into acquiring the habits I need – whether it’s blogging or spending a half hour writing 500 words in my novel or making dinner at home every night for a week with fresh vegetables from my garden. Then I’m all high-fiving myself over finally getting through the mire and moving on with my life.

Until…I get to my monthly oncologist’s appointment. And then, my life gets derailed. January was “Let’s look under the hood.” February was scans, March results, April why don’t we try something new, May was getting health insurance approval, June dawned a day of promise as my number shot down, pain shot up with the new drug. July was managing side effects and trying a lower dosage, August was the reality that July’s strategy didn’t work so we’re back up to a higher dosage and looking for new alternatives, like clinical trials.  And here I am in September wondering where the year went and why I haven’t accomplished anything.

To be fair, I have accomplished some things. I did run a half-marathon with neighbors who became better friends in April. I did a triathlon in June and several 5K runs with a new group of friends.

Another good friend reminds me that I’ve continued to work on my novel, interviewed several famous people for stories I got paid to write, kept up with friends, have launched a campaign to run for borough council, researched cancer treatments and signed up for a conference to educate myself about clinical trials. I’ve mentored kids who live on my street. Volunteered to help judge a baking contest so I could write about it in my novel. I’m taking an online college course on doping, as the issue is a prominent theme in my book.

Still, I have a pile of magazines beside my bed that I can’t seem to get to read. And while I’ve had a lot of great lunches with friends who have helped me craft a plan or make a connection to move me closer to my goals, I still don’t feel like I’m making any progress.

So as I sit down to figure out how I’m going to accomplish in the remaining three months of the year what I couldn’t seem to do in the past nine months, I also ask myself how do I live alongside this disease and stop it from running my life as I’ve let it? How do I send it to the corner for a timeout so peace can reign in my classroom for the remainder of this period? And when will I be done with this lesson so I can move on?

 

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