7.26.2018

My Dumb Luck Should be Taken in Context

My friend Stacy shared an article written by a cancer survivor about the terminology used surrounding this disease on Twitter. The article really resonated with me, so I retweeted it with the following comment:

My Tweet didn’t sit well with another patient on Twitter, who called it “ugly” and asked me to take it down. I’m guessing he never read the article to understand the context my tweet was written in. Context is everything people. Especially on a platform like Twitter that moves so quickly people often forget to consider it. I kindly responded to him:

In my tweet I wasn’t blasting everyone who used the word “beat” to describe their “fight” against cancer. I just said I “secretly loathe” the use of the word. Everyone is entitled to describe their experience with cancer using any word they like. I happen to personally cringe when I hear the word used, but fully understand that we all need to find words that illustrate and often sugarcoat the process of being diagnosed with and “fighting” this relentless disease - no matter how cliché they may be. We must instill hope into cancer patients by any means possible.

I get that most laymen don’t know the inner workings of this disease, and it's easy to say someone “beat” the disease when they personally didn’t do anything but show up and let a surgeon remove it from their body. In my tweet I was just stating very basic and medically supported facts about this disease.

I have plenty of friends who surgically “beat” cancer, and are counting down the scans until their own personal game of Russian Roulette passes the 5-year mark and they are considered officially cured. It was just their luck their cancer was caught at a stage when it could be cured by surgery alone. And maybe it's just their luck that the adjuvant chemo they did happened to catch that one rouge cell that was ready to take up residence in their liver. Or maybe it was just their luck that any of those rouge floating cancer cells never found a place to bed down and grow. Or maybe it's their bad luck that they did.

Your friend didn’t “beat” cancer by going to Mexico and drinking carrot juice. He was surgically cured of cancer before he went to Mexico. Chris DIDN’T beat cancer because he changed his diet. He beat cancer because he was surgically cured of cancer and happened to be one of the lucky ones who never had a recurrence.

In the end cancer patients, caregivers, their friends, and family need to find words that are going to lift up and inspire them. Use any word you like. Please. Create any metaphor that illustrates the process of managing cancer care that will empower your experience. And if you can do it using Star Wars even better! But read the article and consider the implications your words have for someone who is giving everything they have to knock back this disease in their body with little to no success

If I ever “beat” cancer, I will know it’s not because of anything I personally did. It’s not because of my strength of character. It’s not because I put up more of a “fight” than the next guy. It won’t be because I’m tough or strong. It will be the pure dumb luck of my tumor genetics and their response to chemo and targeted therapies far longer than ever expected or anticipated by any research study.

I have watched too many friends go through the most horrid experiences and pain to stay alive, yet succumb in the end. I think of them when I hear someone use the word “beat” in association with cancer and that's why it bothers me. I feel like it devalues all the crap they went through, and I wonder what antonym we could collectively use to describe all the shit they put up with only to die in the end.

7.20.2018

Chapter 2: A Plethora of Pustules and Pimples

As I sat in the exam room at the University of Wisconsin, elated at Dr. Deming's confirmation and recommendation I go back on Erbitux (Cetuximab), my mind immediately when back to that miserable place. In the 5 previous years of treatment before starting Erbitux in November of 2016, side effects had never brought me to tears like this drug.

With all the weekends spent in bed feeling eternally hung over, the throwing up, the hair falling out, the endless trips to the toilet - I just did it. I rolled with it. I took it like a champ. But it never made me emotional. Perhaps because I knew it was all temporary and there was a light at the end of the tunnel. With each round I could resume pretending to be normal within days.

But with Erbitux I never got to the end of the tunnel. Though I woke up every day feeling amazing, the pain and misery of my skin was unending. The cracks in my feet and fingers were not going to heal. No amount of exfoliation was going to make my skin smooth. And my face was never going to be clear, fair, or not hurt. Getting out of bed to walk to the bathroom became a painful chore. Trying not to bump my infected toes into anything became a chore. Putting my compression garment on without my fingers bleeding all over it became a chore. 

Despite feeling great, my quality of life sucked.

On the 4 hour drive back to the Twin Cities from Madison, I prepared myself with one of those "It’s Not That Bad" pep talks, when it really was that bad. It was the only time in 6+ years I’d cried in an oncology office, in front of an oncologist (and nurse, and pharmacist, and volunteer) because I just couldn’t deal with it anymore. And now I was eager to do it again? Eagerness comes easy when you don't have a choice.

As I drove, I tried to rebuild the timeline of my treatment, and associate the severity of the side effects in monthly increments. It wasn't until I'd been on it past 6 months that my skin deteriorated to the point of no return, so I knew I had some manageable time. I would also not be adding in the oral chemo Xeloda (Capecitabine) - which most likely exasperated the horrible condition of my hands and feet given it causes hand and foot syndrome

When an oncologist at Mayo Clinic describes you this way, you own it.
The next day I spoke with my oncologist at the University of Minnesota, who readily agreed to this plan. I think he knows I'm "well read and sophisticated" (according to the oncologist I met with at Mayo) enough to direct what's best for my own care and treatment. He made arrangements for me to start back up on Erbitux. Today I'm taking a few more long looks in the mirror, and admiring the one toe nail that has almost fully grown back in before heading into treatment number 145.

Meanwhile, I looked at Merrick the other day and said, "butt flakes." His eyes grew big, he through his hands in the air, and ran from the scene! Butt flakes is a term he coined for the dry skin that would fall to the toilet set every time I pulled down my pants to sit. No matter how much exfoliating and moisturizing I did, my skin was cracked and dry. Every night when I'd undress, I could see the dry skin fall as my clothes were peeled off. My lack of fingerprints make me an ideal partner in crime, but the amount of DNA I'm about to start shedding will land us both in the slammer.

I remind myself that side effects are a battle we cannot win. All we can do is tend to them.

For more information about managing the side effects of EGFR-inhibitors, download a copy of Fight Colorectal Cancer's newest guide to skin toxicity. There's even a little blurb in there from myself, and the infamous photo I took of my rash-covered face on National Selfie Day in 2016.
CLICK HERE FOR MORE INFO AND TO DOWNLOAD



7.11.2018

Just Call Me a Badger for Now

After the door shut at Mayo, and with no immunotherapy combination trials at the University of Minnesota, it occurred to me that I could also look at the University of Wisconsin. It's a 4 hour drive from the Twin Cities, and one I'll be making soon enough to visit my boyfriend on a very regular basis when he returns from his sabbatical hiking the Pacific Crest Trail.

I logged back into the Late Stage MSS-CRC Clinical Trial Finder and searched in Wisconsin. Much to my surprise an immunotherapy combination trial popped up at the UW Carbone Cancer Center, and I was pleased to see it was being running by Dr. Dustin Deming. I knew of Dr. Deming from his work with Fight Colorectal Cancer and as a member of their medical advisory board. I had watched a webinar he hosted, and seen him speak in Washington, D.C.

I emailed him right away, told him a concise version of what had happened in the preceding months, and told him I was interested. He responded right away, told me to hold off on starting Lonsurf, and to come see him on Monday. So I did!

Of course I was full steam ahead on this one, but decided to take the detour on Thursday to hear about the mad cow rabies disease virus trial at UMN. Knowing doors can close just as quickly as they open, I need to keep all options on the table here.

I appreciated his honest feedback, and advice and insight on my options and next steps. He gave me a peak into the clinical trial world, and explained to me how my treatment choices past and present could and would impact my eligibility for a trial - most specifically the trial he had open.

For reasons I won't get into, I technically wouldn't qualify for his trial. But he said he could probably write my application in such a way to squeeze me in if it was necessary. At this time he didn't feel it was necessary for three reasons:

#1: The trial will most like alter its criteria soon enough so there's no need to manipulate me in.

#2: The response he's seeing from his current patients enrolled in the trial isn't so amazing that I need to get in right now. The trial needs more time to show us its goods.

 #3: I need to exhaust all standard therapy options before going on a trial.

I thought I had exhausted them (FOLFOX, FOLFIRI, and Erbitux, the EGFR-inhibitor). And then he brought up some data that I was all too familiar with, having just heard about it in a Fight Colorectal Cancer Webinar. It was data so compelling to me that I brought it up to the oncologist at Mayo - and he gave me a universal "meh" about it. And when an oncologist at one of the most respected medical institutions in the world says "meh," you sort of go with it, right?
Actually slide illustrating this from Dr. Richard Goldberg's ASCO Recap Webinar from Fight CRC.

Here's what was presented in the webinar. Tumors that mutate and become resistant to EGFR-inhibtors (in my case when the Erbitux stopped working) can mutate back and become receptive to EGFR-inhibitors again. Mind. Blown. So what they were suggesting is that horrid rash-inducing, toe nail-removing, cracked finger-causing drug that brought about "significant shrinkage" in my lungs might magically work again? Sign. Me. Up.

The oncologist at the Mayo blew me off when I asked about it, but the oncologist at the University of Wisconsin not only suggested it, but recommended it.

To be continued...




7.07.2018

Mad Cow Rabies and Udder Ulcers

My initial pursuit of a clinical trial came to an abrupt end at Mayo Clinic last week. After wasting a few months thinking my oncologist was taking the next steps for me by communicating with an oncologist at Mayo, it was made clear (much to my frustration and disappointment) that nothing was happening beyond some friendly professional exchanges and the talk of enrolling me in a "quickly filling trial."

It wasn't until my infusion room pharmacist got involved, made a call, and put me on the right path that the ball actually got rolling. I learned my first lesson in clinical trial advocacy - pursue it yourself.

Initially I was only mildly annoyed at the wasted time, and that annoyance was magnified ten fold last week when I finally made it to Mayo, only to be told that the trial they had been discussing filled its last slot only days before. The door at Mayo closed as soon as I had opened it.

Had my oncologist instructed to me to call on my own behalf back in February, and register as a patient at Mayo to initiate the clinical trial process, I would have been in that trial now.

I walked out of Mayo with a total buzz kill, and the next standard therapies being my only option. Those being Lonsurf and Strivarga, and they are not cancer killers. They are simply meant to enforce stability - meaning prevent the tumors from growing and prolong life. I liken this to treading water as long as you can before you tire out and drown.

That was Friday.

On Thursday morning I woke up to an email from a clinical trials nurse at Masonic Cancer Center at the University of Minnesota. This is where I'm treated, and my oncologist had referred me to her for a phase 1 trial involving a virus. In this case, a virus I'm now referring to as cow rabies because that's essentially what it is.

The concept is simple. They inject a genetically modified virus into your tumor, your immune system sees the virus (though it still can't see the cancer), enters the tumor to attack the virus, realizes it's in the midst of cancer, and attacks the cancer as well. This trial had phenomenal results in the fancy little (genetically modified to mimic the human immune system) mice, but so far has fallen a little short in humans.

And since everything at my house can be illustrated with Star Wars, it's like Luke chasing a Tie Fighter onto an unknown planet. In this hypothetical scene, Luke is so focused on pursuing the Tie Fighter, that he doesn't realize he actually stumbled upon an Imperial base. Once he realizes it, he calls for backup and starts to attack.

The perk of the trial is it's only 43 days, and there's always a chance I could be one of the few that actually does see results from it. Should it not work, I could move on to the next option, and in 43 days the next option may open up. They are specifically interested in filling slots with colorectal cancer patients, so there's a bed with my name.

My decision to proceed with this trial comes down to one more meeting and one more potential trial four hours away at the University of Wisconsin. I'm hopeful decisions will be made in the coming days, as there's a dose of some mad cow rabies disease (that will cause a rash on my udders) waiting for me at the University of Minnesota.



7.03.2018

Immunotherapy as a Star Wars Movie

Before I start going off the deep end with my pursuit of a magical clinical trial, let me break down immunotherapy and immunotherapy combination trials to a 4th grade level. Or better yet, in terms of Star Wars, since this is how I explained it to the kids. This is how I explain most things to my kids.

As Merrick (my almost 5th grader) will gladly tell you, cancer is just a bunch of normal cells gone bad. Sounds like the Republic, huh? Cells have an off switch and know when to stop growing, unless the pull of the Dark Side is too great. This is the case for cancer cells. A switch has been flipped and they continue to grow until they have taken over the galaxy.

Normally your immune system (the Rebellion) would see these cells growing when they shouldn't be, and rush in to destroy them. But like the Republic, cancer is a stealthy bastard and uses a force field to make it invisible to your immune system (the Rebellion). Immunotherapy works by sneaking on board a Star Destroyer and deactivating the force field, enabling the Rebellion to see it, and sending in X-Wing Fighters to destroy it.

Immunotherapy breaks down cancer's ability to hide from the immune system, the immune system sees it, recognizes it as a foreign invader, and attacks and kills it like it's perfectly capable of doing.

In my world of colorectal cancer there are two types of tumors: MSI and MSS. In keeping with the 4th grade level here, I'm not going to explain the two, other than to say that roughly 10-15% of colorectal cancer patients have MSI tumors - which have responded well to immunotherapy trials. The rest of us schmucks have MSS tumors, and we don't respond to immunotherapy alone.

Enter a combination therapy. The general idea behind combination therapy is the immunotherapy gets the Republic to drop its force field, and allows the Rebellion/chemo/cancer drugs to do their job far more effectively with far less work.

At this point I'm awaiting a combination clinical therapy trial to open up. They're out there, just not at one of the two National Cancer Institute cancer centers in my backyard (University of Minnesota or Mayo Clinic). While I wait, I shall sit on an oral chemotherapy called Lonsurf. It's not meant to shrink my sexy lung mets, only keep them stable while I bide my time.