10.25.2019

REGONIVO: My Experience

Unless you are a patient or caregiver starting or considering REGONIVO in the future, there is no need to read this post. This is what my experience has been on this combination for the last 3 months, and would only be of interest to those pursuing or considering REGONIVO.

Schedule
I am infused 1x a month with Opdivo. This does not follow study protocol, and when my oncologist told me it would be a monthly infusion, I immediately questioned it and was concerned it may impact the outcome. He sent me research information on revised Opdivo infusion protocol, which calmed me down and made me trust in those that have far more knowledge and credentials that 1x a month would be fine.


I followed study protocol with the 80mg Stivarga dose 1x a day for 21 days on, 7 days off. The biggest challenge I had was taking my pills with a low fat breakfast as instructed to by Bayer. I opted for low fat yogurt, and followed it up 2-3 hours later with something a bit more hearty. I normally eat a hearty breakfast.


They checked my CEA at 1 week (day 1), 4 weeks, and 6 weeks. I do not have my CEA for 12 weeks (week of CT scan) yet:
Week 1: 31.9
Week 4: 15.6
Week 6: 8.8
Week 12: TBD


Loss of appetite
This is a listed side effect for Stivarga, and I can assure you if it’s something food related, I’m going to get hit by it. Unless you have experienced loss of appetite, you can not understand what this is like. I have literally wandered the grocery store searching the aisles for anything that looked appealing. I have read over all the glorious flavors of ice cream in the freezer section. But when your desire to eat has been taken, no magical pint of Ben and Jerry’s is going to bring it back. This loss of appetite of course let to my biggest hurdle of my first 3 months - my weight.


Weight loss
Weight loss is nothing new to me since my diagnosis. My weight has come and gone depending on treatment, nausea, and appetite. But this is by far the worst experience I’ve had yet. In the first 4 weeks I lost 12 pounds. As this was more than 10% of my original weight (114) I was considered to have wasting syndrome, something that qualified me for medical cannabis under the laws of the state in which I live. My oncologist entered me into the program as he felt the use of medical cannabis was the only tool he found to be truly helpful for patients experiencing extreme weight loss. The process was easy and I had my CBD/THC tincture by the end of the week.


Because I would be legally considered to be “under the influence” while using the medical cannabis, I opted to only use it when I was alone (not at work and without kids). I found it did nothing to stimulate my appetite, but it very much did stimulate a 4 hour nap every time. I do still take it when the timing is right in hopes that it might have even the slightest impact, but I do not see it being the solution to my growing (or rather shrinking) problem.


As of 12 weeks I have lost 22 pounds, and we are discussing next steps with my health care team to help me continue on with my treatment plan while also getting the calories I’m going to need to add to and maintain a healthier weight when the desire to eat those calories is non-existent.


Fatigue
This hit me hard the first month. I’m not sure if it was the lack of appetite (and therefore deprivation of calories/energy) that led to fatigue, or if the fatigue (and decrease of movement) that led to the weight loss. I have noticed that there is a direct correlation between calories in and energy out, so I’m hoping with a plan to get far more calories in, I can start to gain weight and get my energy back.


Hand foot syndrome
I knew that hands and feet could be impacted my Stivarga and had been warned about blisters. My pharmacist recommended I pumice off any calluses I had to avoid this. My hands and feet were in great shape when I started, so I was surprised to get hand foot syndrome. I’ve resumed trimming my hands and feet to keep skin peeling under control, and find it’s just the annoyance of dead skin at the foot of my bed more than anything. I did lose my entire foot pads over the first 3 months, so peeling is now minor to just new skin.


Sore throat/raw mouth
Though not prohibitive to eating, the sore throat that is a known side effect of Stivarga is at times painful, and does deter me from eating foods that are hard, difficult to chew, and swallow. There were times I just over chew small bits and swallow with a grimace, but generally on days it is worse I opt for soft foods. Lots of yogurt, smoothies, and store bought smoothies and protein drinks. My mouth is raw as if I’d taken a swig of scalding coffee and swished it around. This has left me averse to eating things that are acidic, using mint toothpaste, and avoiding cough drops to tame my cancer cough.


This was my experience during my first 12 weeks on REGONIVO. I ask that you not DM me with questions, as I have thoroughly explained everything I experienced here. Thanks.

REGONIVO: 12-Week Update

Amazing if not miraculous news. The new drug combination I’ve been on for the last 3 months is working, and as my oncologist said when revealing my scan results today, “I think we’ll really be celebrating in 3 months. This is just getting warmed up.” I was pretty hopeful going in today, and comforted by the first 8 weeks of tumor marker blood tests (CEA). They dropped significantly at the 4-week and 6-week mark, and are a good indicator for me about what's going on inside the ol' lungs.12 weeks later we have the visual proof to back it up with great CT scan results.
Graph of CEA test results over last 6 months.


Why my oncologist thought things would be more impressive 3 months from now is due to activity evident on the scan. Something called cavitation. In layman’s terms, the tumors are dying from the inside. And this was no more evident to us as he scrolled through a side-by-side comparison with my last scan. Aside from seeing overall shrinkage in all my tumors, in the middle my largest tumor was a huge dark circle. I didn’t think to take a photo because we were just so amazed at the size of the black hole. The core of my largest tumor was dead. 




This is a brand new treatment option for colorectal cancer patients with microsatellite stable (MSS) tumors, and a phase II trial is now open and recruiting patients. I have opted to do this drug combination off-label because at the time I started there wasn’t public talk of a trial opening, I needed something, and this looked so promising. I was at the right time in my treatment timeline. Off-label simply means that I had to request the immunotherapy drug Opdivo from its manufacturer Bristol Myers Squibb because it was not FDA approved for my tumor type. 


Since starting, many other colorectal cancer MSS patients have done the same, and many are enrolling in the trial. I am so hopeful for tumor markers to come in soon for others. We may have an immunotherapy combination that can work for some MSS patients, which has been something long sought after by researchers.


I will admit that I didn’t expect this to work for me when I started. It just wouldn’t seem right or fair that once again I would respond to another line of treatment (my 4th), that I would continue to have the privilege to live, and that I would continue to be so damn lucky while too many of my friends weren’t. I thought at this point my tumors would have figured out a way to mutate into something impenetrable. But we have learned from Star Wars, regardless of what the cocky Empire thinks, the Rebellion always finds a way in.



7.19.2019

You Try Pronouncing Regorafenib and Nivolumab Really Fast

In June an abstract was presented at ASCO from a phase 1 study out of Japan. It combined 2 drugs currently being used in cancer treatment in the US, and the results of the study were promising - promising enough to get the serious attention of GI oncologists and patients. Serious enough that I took screenshots of the presentation slides I saw come across Twitter from those in the Twitterverse that were in attendance. 


The study treated gastric and colorectal cancer patients with microsatellite (MSS) tumors with a combination of Nivolumab and Regorafenib. Regorafenib, or Stivarga as it’s known for people who can’t spell or pronounce fancy drug names like myself, is already in line as standard therapy for colorectal cancer MSS patients. Though approved by the FDA, Nivolumab (Opdivo) is not approved for my cancer type (MSS) because to date there has been no clinical data to support that this tumor type would respond to this immunotherapy.


In the study, the response rate in colorectal cancer patients with MSS tumors was 29%. As this was a phase 1 study, the number of patients enrolled was small (50 over all, 25 colorectal). These results were exciting, unexpected, and encouraging enough that there is talk of opening this as a phase III trial in the US. But I ain’t got time to wait for that!



The timing couldn’t have been more perfect, as I was a couple of weeks from starting my first clinical trial with its one-and-done short run of 42 days, and would need to line up my treatment plan after its completion. 

The week ASCO concluded (and the same week these results were presented in the abstract) I traveled down to MD Anderson in Houston to check out their trials. While meeting with the oncologist (and his fellow) about potential phase 1 trials available, he brought up this study. Of course I had the screenshots of the presentation slides on my phone and whipped them out! As he talked, the fellow pulled up the abstract to read, and within minutes we were all in agreement that mimicking this trial was the way to go. Fortunately I have an oncologist who is equally trusting of my ideas who immediately put this plan into action. 

Since these two drugs are in circulation in the US, I could duplicate the study. As Nivolumab was not approved for my tumor type, my insurance company would not cover the cost and I’d have to get it “off-label.” This means asking the drug manufacturer to give me the drug for free. The process wasn’t complicated, and in-house staff at my cancer center took care of it. Within days it was done.


Once I wrap my current trial with a scan on Monday, July 30, I will begin this treatment plan on Friday, August 2. The side effects from Regorafenib can be rough, but ironically the best results of the study came with the lowest dose of the drug. Knowing this, I'm hoping the suffering is kept to a minimum - as the drug is known for destroying hands and feet.


I wouldn’t exactly call this going rouge, as the results from the phase I study have clearly inspired US researchers to actively create their own study. I’m just getting a head start. I know that if I expect to survive this disease or (at the very least) continue to prolong my life - I have to take risks and venture off the paved path. 


Those of us with MSS tumors have been sitting on the sidelines for a while watching everyone else get to successfully play in the game, and a study like this can only be likened to the coach telling us to get off the bench and start warming up. I just hope I can do my fellow MSS patients proud as I get called in early to play.

7.02.2019

How Now Mad Cow

I finally pulled the trigger on a trial, and I will admit it wasn't easy.

It was very easy for me to say yes (to that clinical trial dress), but what wasn't easy was finding a trial in a timely manner - or at least timely enough to keep my anxiety from creeping in to every corner of my life. To say it was a weird few months is an understatement, and my head space was clouded over in ways I've never experienced. I found myself withdrawing from the world - not because I was in a depressed state, but because I didn't have an ounce of anything to give as long as my mind was consumed with the reality that I had no treatment options on the table.

It has been nothing short of bizarre to have had a plan for 7+ years, and then all the sudden be left stranded on an island waiting for the phone to ring. All the while knowing cancer was continuing to grow, and the horrid cough I had reminding me daily that things were not improving.

I opted for a phase 1 trial primarily because that's what is available to me and my tumor type. As they say, beggars can't be choosers, and I was at the point of begging. I know most patients cringe at the idea of a phase 1 trial, as it's when the drugs are first tested in humans and the main purpose is to determine proper dosage (meaning how much of the trial drug can be given before side effects/toxicity because an issue).

The catch is the drugs they are studying have been shown to work in a lab, and by "lab" I mean in animals. Are you offering yourself up to be a human guinea pig? Absolutely. But are you also offering yourself up to be the first to get drugs that could work? Absolutely!!!

What I found most surprising once I jumped into the clinical trial pool was how hard it was to actually get into a phase 1 trial - primarily because of space available and the timing in which that space becomes available. Phase 1 trials have limited numbers of patients, and it's often doled out at a "one at a time" rate. Meaning in some cases I couldn't start a trial until the previous participant had completed their run.

Over 3 months after my last round of chemo the stars finally did align, and a trial I signed up for over 2 months prior locked in my spot. Ironically it was a trial I had considered last summer, and opted to pass on due to the option of revisiting a previous therapy. I'm playing the long game here, and I knew going in my goal would be to buy as much time as I could. By "buy time," I don't just mean life, I mean time for trials to progress, data to come in, trial arms to open, and new trials to begin.

In my case, the trial I was considering last summer changed it up a little from when I first considered it. They went from doing an intratumeral injection of the virus (injecting it right into the tumor) to doing an IV infusion of the virus (a drip from the bag) and found they were getting better results from the IV infusion. It's a clear example that "buying time" bought me a potentially better outcome.

The trial itself, one I've taken to calling Mad Cow Disease, is one and done. It is what's called oncolytic virus therapy, and if you click on that hyperlink you can better understand the use of viruses to fight cancer. I was infused with the virus, spent 24 hours in the hospital dealing with magnified flu-like symptoms, and spent the following week trying to get through the day without an all out crashing nap. We'll see if anyone I work with reads this, as I'll admit to putting my head on my desk for a power nap at work while listening to a webinar because I just couldn't go a minute more without face planting on the nearest flat surface. And they thought my door was shut just to filter out the ambient noise.

Roughly 6 weeks after my infusion I'll have a scan to see if it worked, and then I'm free to move about the clinical trial world again. I do have a few spoons in the pot, and something exciting that's brewing that I'm not prepared to talk about until it's actually underway. But the relief I have now is that I at least have options - something I spent 13+ weeks feeling like I didn't have, and that's a very frightening place to be.



4.13.2019

The Layers of Palliative Care

By treating the patient as a whole, we ensure the common gaps in care do not get overlooked and the burden of cancer is reduced.


I was on the phone with a colon cancer patient who was looking for help and guidance. She had grown frustrated with her oncology team, and gradually explained the long list of complaints and opportunities where they had let her down. After validating many of her concerns, I told her, "It sounds to me like you are looking for palliative care, and they just aren't offering it."

In my world, palliative care is a term thrown around as frequently as my rounds of treatment, but it was the first time she had heard the word. As I began to explain it, I could hear her disappointment turn to hope over the phone. There was a word to describe the patient experience she wanted but wasn't getting.

Not everyone knows what palliative care is, and most don't know how to put it into practice as advocates in their own care. It is the relative new kid on the health care block, and many medical teams are not trained to care for the patients with this approach. So, what is this magical thing called palliative care, and how can we incorporate it into our own health care plan?

As I see it, palliative care is tending to whole patient and not just their disease. For me, my care plan involves layers, that when woven together, reduce the stress I feel as a patient. And the less stress I feel, the better I'm going to fight my disease and improve the quality of my life.

Here's what my palliative care plan looks like:

The internal layer is about fighting my cancer. It's about infusions, scans, clinical trials and working to keep my disease stable. For others, it could include radiation and surgical treatment. It may even involve second opinions, and a multidisciplinary approach to beating back disease.

The next layer is about managing side effects. I meet with my pharmacist at almost every infusion to talk about nausea, blood counts and what we can to manage my day-to-day quality of life through medication. At times, this layer has included meeting with a dermatologist and podiatrist to discuss treatment-related skin and foot issues, and an acupuncturist to help treat neuropathy.

The next layer involves care that doesn't immediately impact my ability to physically fight the disease, but my ability to live my life to the highest quality despite the disease. That includes seeing a physical therapist to manage the lymphedema I developed in my left leg several years after my primary surgery. For others, it could be meeting with a mental health professional to help process the emotional repercussions of diagnosis, a dietician to help manage treatment-related nutritional needs, or a social worker that will help navigate services available for patients through the health care system or community organizations.

The outside layer extends beyond me to include my family, and the community and online support programs available to us. For me, it includes local organizations that offer family support programs such as camps for my kids and art therapy nights. Online support communities help me know I'm not alone in my fight and offer the peer-to-peer mentorship that is unique to my cancer and specific treatment plan. Support programs could include free or reduce cost service to patients that fall outside of the medical realm yet fill gaps in care and help reduce the burden of cancer on an individual and a family.

It is important for a cancer care team to know about the various layers of care they can bring to a patient fighting a chronic or terminal disease, and begin to look at treating them as a whole. It's also important for a patient to advocate for themselves, and understand what services are available to them within reach of their community. As we work from the outside layers in, we're going to create an environment that enables patients to give everything they have to fighting and managing their disease, and ultimately produces better outcomes.

This article was originally written for CURE MagazineYou can find this article and others I have written on their website

1.30.2019

Parenting, Interrupted: Three Tips on Being a Parent With Cancer

As a parent facing cancer, we just want to know that our children will emerge on the other side of our diagnosis and be alright.


I cross paths with many parents newly diagnosed with colorectal cancer. In the midst of trying to wrap their heads around a cancer diagnosis, they are also trying to integrate this most unwelcome guest into their homes.

It is completely unfair and not right that you find yourself facing a cancer diagnosis when you have nothing but hopes and dreams for the way parenting and childhood is supposed to be. You have done everything you can to protect them from the pretend monsters under the bed and the real monsters lurking in the world. Yet, here at your doorstep is the most real and feared monster of them all, and you have no choice but to let it in.

How is cancer supposed to fit into this Instagram-perfect life you've created for your family? Too many times I've looked down at my kids coloring on the floor of my infusion room and wanted to scream, "IT'S NOT SUPPOSED TO BE THIS WAY!" It's not supposed to be this way for my friend who was diagnosed while still pregnant, or my friend who lost her husband while their baby was still in diapers, or my friend who has a special needs son who will depend on her for the rest of his life. Despite the way it supposed to be, but we have no choice but to parent through cancer.

For parents facing a cancer diagnosis, I offer three bits of advice:

1. Grieve

Grieve the loss of parenting as you expected it would be. Grieve the loss of moments, time, milestones and innocence.

While sitting in a hospital bed recovering from my initial cancer surgery, I had to watch cellphone video of my baby taking his first steps. I'd left that nursing baby at home, not realizing that he would start to walk, and the stress of surgery, drugs and additional weight loss from a liquid diet would dry up my milk and force me to wean him.

In its first week, cancer had stolen significant parenting milestones from me. Little did I know it was foreshadowing of the years to come, when school performances, field trips and holidays would be trumped by infusion appointments and side effects that left me unable to parent like I wanted.

2. Control

Let go of control. Let go of the hard-and-fast rules with which you parent. Let go of the state of your house, that pile of laundry or even making your bed. You can try to hang on, or you can save your energy for fighting this disease.

I laughed as I piled the groceries on the belt in the checkout line. There were enough pre-packaged ready-to-eat meals to last a week. I would have silently shamed this version of precancerous me had I seen her a few years before, when I was busy making homemade organic baby food and nursing my babies on demand.

Precancerous me had the energy to passionately care about what my kids ate, what they wore and the amount of time they spent in front of the television. Cancerous me just wanted to crawl in bed and make the next few days as effortless as possible, and spare what little energy I had for making sure my kids were fed, happy and had their mom.

3. Empower

Giving your kids control in an out-of-control situation will empower them and make them feel like they are part of the solution.

My 4-year-old couldn't drive me to appointments, or take notes while my oncologist rattled off the names of drugs I still don't know how to spell. But he knew where I stashed all my nausea meds, and which puke bowl to grab me when I needed it. He has always had an age-appropriate role in my care and has done his part to make me feel as well as he could.

By making your kids feel like they are part of the process, you are making them feel like they are part of the solution. My preschooler wasn't able to fix my disease, but he was able to support my fight against it.

As instinctive as it may be for parents to want to help their kids before they help themselves, we have to listen to the flight attendant and put the oxygen mask on us before we put it on them. We have to make sure we're breathing through this, so we can show them that they can keep breathing through this, too.

Regardless of the outcome of the diagnosis, we must remember that children are resilient. They won't remember what we missed, but they will always remember when we were there.




This article was originally written for CURE Magazine. You can find this article and others I have written on their website





11.09.2018

Pardon My Goatee

As my male oncologist and male pharmacist prepped me for the side effects during my first dose of Cetuximab, they down played things like the ultra-dry skin and the nail bed infections - something that would ultimately land me a weekend in the hospital, removal of my toenails, and some IV antibiotics. It was all about the rash, and every pill and cream handed me was about suppressing and controlling what is well known to be the most visible side effect of the EGFR-inhibitor drugs.

After a couple of months I noticed something else unexpected, and casually mentioned it to my pharmacist as he stopped to check on me during my weekly dose. "You didn't tell me I'd be growing a beard!" He seemed surprised, and before denying its possibilities quickly searched for side effects on his phone. And there on the drug manufacturer's website it said:

"Skin problems are one of the most serious side effects of ERBITUX. Skin problems include an acne-like rash, skin drying and cracking, infections, and abnormal hair growth."

Abnormal hair growth. No kidding. 

I now found myself sporting hair in places I didn't think my face I needed it, and dark hair at that. Coating my nose were tiny little black hairs only visible under my magnifying mirror and spotlight. There was the dark beard and mustache I was eager to wax if my raw skin would allow it. The first time it happened I was willing to face the repercussions it might have on the compromised skin of my upper lip. It may bleed and scab over, but at least it would be hairless. 

And there is of course the famed long, curly eyelashes everything thinks are so amazing on these drugs. What they don't tell you is those long curly eyelashes curl in any direction they want, including right into your eye. And I can assure you mascara doesn't look nearly as lovely when each eyelash is going off in its own direction. It also doesn't look lovely when its coating the crusty edges of my eyelids, which seem to perpetually be oozing something that replaces itself and hardens faster that I can scrape it off. My normally fine and dainty eyebrows were replaced with thick, course hair that had no interest in staying calm in place or hanging out in the same direction. I resorted to trimming them short, making it all the easier to pop the pimples I'm not suppose to touch and clean the crust that coats them every morning when I wake up.

Last year at my annual skin check, I asked my dermatologist if there was anything she would recommend for the rash aside from my usually scripts, and casually mentioned the obnoxious facial hair. As she scanned my body with her illuminated magnifying glass, she came to my ears and exclaimed, "Girl, you're just down right fury." I hadn't noticed, but I wasn't just the bearded lady, I was also coated in a light dusting of fine baby hair - something you might find on a newborn fresh out of its first bath. 

Having shared a motor home with hair and make-up on many a film set, I had learned of and partaken in the industry practice of face shaving. Not really a hairy girl, I knew the makeup artist used this on talent to make their face paint look more flawless, and to exfoliate. There is a rumor going around that men age so much better because they are forever exfoliating with their daily shave. I tended to opt for the exfoliating factor when I did practice the fine art of a facial shave, as I wasn't really one for wearing layers of foundation.

Faced with a mug covered in course, noticeable hair (in addition to a pimply rash), I decided to bear any pain and misery it might cause my raw, scabby face and shave. It might be one way to also rid myself of the chronic layer of crashed dry skin around my cheeks. I didn't have the patience to wait for my goatee to grow long enough to wax again, nor did I have the confidence to walk around grooming it with hipster beard paste until it was long enough to do so. 

Shaving would be it for me, and I was going to own it. Like so many dirty details of this disease, I have had no shame. And just as normal ladies would never speak of poop or facial hair, I am not a normal lady and so I will.




8.21.2018

The Ripple of Empowerment

At some point in my youth, my dad told me that secrets can breed shame and shame has power over you. Sorry if you don't remember that dad, but you did and it stuck with me.

When my left leg unexpectedly swelled up 3 years ago, and I was told it was always going to be swollen, I was ashamed. I was ashamed that my leg was bigger than it had ever been, I was ashamed that it wasn't symmetrical to my right leg, and I was ashamed of the compression garment that I would have to wear every day for the rest of my life. 

Not only did cancer make me different, now my fatty leg did, too.

Last year I watched the documentary Embrace on Netflix, and in it Taryn Brumfitt travels the globe talking to women about their bodies, body image, and social perceptions. Toward the end she interviews Turia Pitt, an Australian athlete who was burned over 65% of her body after being caught in a wildfire during an ultra marathon.

She is someone who cannot hide her perceived imperfections. While being interviewed in the documentary, she said something which immediately resonated with me and changed the way I looked at my leg:

"If you're self conscious about something, other people will notice it. But if you just own it, people don't care." 

And she was right. I didn't so much decide to own it, as much as I committed to not giving a shit anymore. I've spent the last year ridding myself of the shame, and wrapping that fatty leg around my inner honey badger. I embraced my shorts, stopped shopping for maxi dresses, and gladly accepted a last minute invitation from a friend, photographer, and fellow lymphie to do a photo shoot with my shameful little secret on display.

And the response that came forth was overwhelming. I realized that 30 minutes on a rainy Saturday morning had an impact beyond me and the affirmations on social media for these photos. It made me realize there are people that need to see photos like these. They need to see people just like them living with their self-prescribed shame on display for the world to stare out. Get the rubbernecking out of your system people so we can all resume our regularly scheduled programming. By me releasing my shame, I gave others the courage to release theirs. It's the ripple effect of empowerment.

Now when I step out the door I channel what Turia Pitt said, and remind myself that I don't care so they won't care. Feel free to stare at my fatty leg all you want while I obliviously resume living my life.












8.08.2018

Aunt Barbara

My dad texted me the other night to let me know his sister was dying. Her bout with cancer a few years back had returned, and they opted to keep the information close at hand. He had intended to make the drive down to see her this weekend, knowing it would be his time to say goodbye. But life and cancer had other plans, and she passed away this morning. 

In his text to me a few days ago, my dad relayed that my Uncle Bill said he was ready to let her go. That’s a startling and brave statement to make for a man that I know adored this woman for over 50 years.

It's the last selfless act of a relationship - to tell the one person you never want to be without that it's alright to leave. 

But I know that’s what happens for cancer caregivers and partners. It’s not that they want to say goodbye, but they know the inevitable end is coming whether they like it or not. And the idea of the end bringing long overdue relief is often so much easier than continuing to watch the person they love suffer. 

Death by cancer isn’t the peaceful, quiet, art directed end that Hollywood makes it out to be. It’s not graceful and serene, but months, weeks, and final days filled with pain so uncontrollable the only option in the end is often medicating to the point of sedation. It’s machines, oxygen, tubes, drains, and a withering away of a body that can no longer be nourished as it rots from the inside.

I think death itself isn't want cancer patients fear, but the process it's going to take them to get there. But in all of its brutality, it gives us one gift, and that's the opportunity to say the things we want to say and to say goodbye.

I didn't get to know my Aunt Barbara until I was a teenager, and I found her feisty, witty, opinionated, and never one to bite her tongue. But the humor with which she delivered every line would keep anyone from ever being offended. She loved her family and my Uncle Bill fiercely, and that alone was enough for me to admire and everyone to emulate. 



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.