Tag Archives: Chemotherapy

Another New Beginning

Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
 
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
 
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.

Continue reading Another New Beginning

The Overstayed Welcome

We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.

But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.

Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process. Continue reading The Overstayed Welcome

Walk (or Run) for Cancer Research

The idea of creating or participating in events that raise awareness about lung cancer is very close to my heart. My mother started the Breathe Free Walk to support lung cancer research, and I was in South Carolina for its inaugural event in 2016. The turnout was amazing considering the lack of resources or experience in putting it together, and the 2017 walk was an even more successful fundraiser.

Part of raising awareness is giving voice to other patients and listening to other points of view. There are many types of lung cancer, and the patient experience can be wildly different. It is important to understand that many of our preconceived notions about these cancers paint a picture that often does not reflect the reality of these experiences.

One thing I have found very enlightening is in my exposure to patients with mesothelioma. This variety of lung cancer has long been associated with older patients who worked around asbestos, a material that has long been known to cause cancer. So discovering patients who contract this disease under the age of 50 conflicts with expectation. And yet, it is much more common than I had ever imagined.

Below is a guest post, contributed by a mesothelioma patient who shares my view about the importance of group events designed for both fundraising and awareness.


Charity Runs Help Raise Money, Awareness for Cancer

Guest author: Virgil Anderson, from mesothelioma.net

Charity runs and walks serve several purposes: they raise awareness and money for non-profit causes, bring communities together, and also promote fitness and wellness in those communities. From the smallest neighborhood runs to national organizations, charity runs for cancer are important for bringing awareness and raising funds for research and patient care. This is especially important for rare cancers, like mesothelioma, that get less attention and less funding. Here are some of the bigger runs, and a small run that is just as important.

Runners raising awareness for cancer research
A Cancer Awareness Fundraising Run, Photo: Virgil Anderson
The STOP CANCER Run/Walk

STOP CANCER is an important charity group because it focuses on raising money to help fund young researchers, those that are the most promising and who are working on innovative new treatments and preventions for all types of cancer. The annual run and walk takes place in October and raises hundreds of thousands of dollars every year and attract over 1,000 runners and walkers. It takes place in Van Nuys, California, with participants coming from all over the country to run, walk, and donate.

Relay for Life

One of the biggest cancer events in the country is the American Cancer Society’s Relay for Life. It is a nationwide team event with the purpose of raising funds for cancer research, patient care, and cancer education and prevention. What makes this event different from other fun runs and walks is that, depending on the particular event it lasts between 6 and 24 hours. Each team participating has someone on the course at all times, as a symbol that cancer never stops or sleeps. Thousands of events are coordinated for Relay for Life in communities across the U.S. and in other countries.

Race for the Cure

Another of the biggest cancer charity runs in the country is the Susan G. Komen Race for the Cure. Like the Relay for Life, this is a nationwide event with individual races occurring in many communities. And unlike that event it is an example of a charity run organized for a specific type of cancer. The Race for the Cure raises money for research, screening, treatments, and education for breast cancer. The races have contributed $2 billion to these efforts over the years.

Miles for Meso

Another important, but smaller running event is Miles for Meso, which highlights the rare asbestos-related cancer known as mesothelioma. It is organized by the Simmons Mesothelioma Foundation and is a 5K run or walk that raises money but also crucially raises awareness, a constant issue for rare diseases. The race began in Illinois but now is held in several locations in multiple states every year in the month of September. Money raised goes to the Mesothelioma Applied Research Foundation, which has eradicating mesothelioma as its main goal.

Fun runs and walks are not the most efficient way to raise money for a worthy cause, but there are many important reasons they are valuable. Building awareness is one of the most crucial of these reasons, especially for diseases that are not so common. They are also important for community building and getting people involved beyond simply writing a check to make a donation. And finally, these events are positive experiences for everyone, bringing people together for a good cause and to get people active and socializing. These events are to help cancer patients, but they are so much more than that.


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Spoiler Alert: Side-Effects Show Up

It has been over two weeks since I began taking my new drug, afatinib. Over two weeks of feeling good, feeling like the chemo has been thoroughly flushed from my system even as I have diligently taken these new pills, feeling the best that I have in three years. I have been keeping a journal this time, chronicling how my body is responding each day, trying to pave the way for a better understanding of how to live with this new treatment. For the first week, anyway, it almost seemed like it was going to be too easy.

There are two weeks of video updates on my Patreon feed, talking about how great I feel and wondering how bad the side effects will be once they really kick in. I had been prepped by my oncologist that it was very likely that I would experience worse side effects than I had with the chemo I had been taking. This was based on how well I tolerated pemetrexed, the chemotherapy drug that had kept my cancer at bay for so long, but not so much on patients in general having a particularly tough time on afatinib. Which is not to suggest that I expected a walk in the proverbial park with this new drug.

Still, the first week was amazing. It was almost like I was taking nothing at all. Sure, there was some digestive stuff going on, but nothing outside of the realm of what I would have been used to in a previous life if I decided to live off of bean burritos for a few weeks. And I love a good burrito, so it would be worth it. But by day eight, I realized that the side-effects of the drug were presenting themselves quite visibly. Continue reading Spoiler Alert: Side-Effects Show Up

Interview With Radiation Therapist Turned Stage IV Lung Cancer Patient

I meet a lot of interesting people through my lung cancer support group. Most of them are on some form of chemotherapy. A few have tried immunotherapy. Some targeted drugs have been in the mix, along with surgery and radiation. The one commonality between them is their optimistic perseverance. But it isn’t rooted in blind optimism or faith — the whole point of the group is to share perspectives and experiences, gathering useful knowledge in the process. We all come with our own perspectives that inform our decisions and influence how we share, most of us having begun as (more or less surprised) patients that have evolved into advocates. Once in a while, a patient arrives with multiple perspectives built-in, hardwired to see her situation from both sides of the exam table.

And if I’m really lucky, she lets me interview her for my podcast:


 

If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on TwitterFacebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

Inside a Chemo Clinic Phamacy

Where the concoctions are prepared.

Before I concluded my chemotherapy, I sat down with the pharmacist who had mixed my drugs for nearly three years and recorded our conversation for my erstwhile podcast, The Deep Breath. It offered a revealing look inside the process of administering chemo, as well as other drugs used to treat cancer patients.

Meet Evan, the pharmacist. Click his image to hear his insight into the treatment of cancer through pharmacology.

I did not realize that I was one of the longest consistent patients currently receiving treatment at this facility. Although I was preparing to call chemo quits after slightly more than 2.5 years, I knew of at least one patient who had been on the same basic regimen as me for around seven years. But that had been before my time. As I settled in to interview my pharmacist, he revealed that he was not aware of any patient at the clinic who had been receiving chemotherapy as long as I had been since he started the job. I appreciated the special distinction, even though I had mixed feelings about it. Continue reading Inside a Chemo Clinic Phamacy

Frying Pan, Meet Fire – Leaping from One Therapy to Another

I knew that I would not stay on chemotherapy forever. So getting to the point where I ended my “chemo journey” was not completely surprising. In fact, I had anticipated that a change would be good for some time — after over 2 1/2 years of the same routine, not only had it begun to gnaw at me each time I faced another infusion and ensuing side effects, but there was something of a “gut feeling” that the chemotherapy drug I had been on for so long had done about all it could do. I was probably influenced a lot by the promise of Immunotherapy drugs that had become the media darlings of the cancer world. When my oncologist said it was a good time to consider another approach, I was eager to do it.

Besides immunotherapy, for which I had hoped to join a clinical trial, there was the possibility that I might harbor an actionable gene mutation for my adenocarcinoma. My initial genetic analysis from a biopsy prior to starting chemo had shown none of the mutations that were being directly treated at that time. But a couple of years makes a big difference in the cancer world, especially with the increasing rate of progress science has been making over the past few decades. A re-analysis of that old biopsy showed nothing new, but a quick, painless liquid biopsy — two simple tubes of blood and fifteen minutes of my time — revealed that I harbor a fairly rare mutation, one that affects roughly two percent of  the adenocarcinoma subset of lung cancer patients: ErbB2, also known as HER2.

This shifted gears for me regarding the drive down my treatment path. It also made me shift perspective. There is the question, now, of whether finding myself in such a cancer minority is a sign of good fortune. On one hand, it means that my genetic demographic is not highly studied — the downside to minority group patients is simply that there are fewer of us to put into clinical trials. Flip that over, however, and it makes the trials that have been done highly specific — and it makes the case studies on patients with this mutation also highly specific. Which in turn suggests that this might be a very positive development after all. Continue reading Frying Pan, Meet Fire – Leaping from One Therapy to Another

Side-Effects I Won’t Miss: The Chemo Diaries, a Coda

My treatment is far from done, my “cancer journey” only partly traveled, but I am saying goodbye to chemotherapy — at least for now. Forty rounds of infusions came to an end last week and, though my brain is fatigued and my body is a bit of a mess, I’m taking a moment to appreciate the things I definitely will not be missing.

Topping my list, even above the malaise and nausea that sometimes follows my treatment, is:

#1, The Uncontrollable Gag Reflex.

It’s been a nasty thorn in my side, that gag reflex. Just brushing my teeth will set it off, causing me to wretch over the sink, even if it has been a long time since I ate. And scents of any kind have been known to cause gagging, too — and not just the smell of rot or the cat box or whatever was thrown in the garbage can the night before, but, yeah, all of those, too. Goodbye, gag reflex!

#2, Grimy, Oily-Feeling Skin

The days following my infusion are better with frequent showers. As I purge toxins, I always imagine that I smell horrible — and, in fact, I often cannot stand my own odor. But beyond that, my skin just feels gross. I’ve had the weirdest blemishes, well beyond any teenage acne I experienced in my wayward youth, and it wasn’t always easy finding soaps that I could tolerate in the enclosed space of a shower. Waking with a slick layer of grease on my face and a sticky sensation all over my body (worse on hot days, of course), mixing thick perspiration and whatever else is pushing through my pores, is an experience I am more than ready to be done with. Continue reading Side-Effects I Won’t Miss: The Chemo Diaries, a Coda

Common Sense, Clarity and Wellness Warrior Lies

As long-time readers know, I take issue with a number of high-profile “wellness warriors” and anti-science advocates who claim to offer “natural,” “holistic,” or simply “alternative” treatments that can cure cancer or prevent it entirely. Chief among these are Chris Wark and Ty Bollinger, two people with absolutely no scientific or medical training and tons of bad advice. They are part of a large network of disreputable and largely discredited hucksters, many of whom get by on their claims by offering just the tiniest shred of truth mixed in with their hyperbole and insidious messages. They thrive in our increasingly anti-intellectual culture, where headlines and sound bytes sway their customers and their “fan base” into believing that there is substance to their messages. This is why, more than ever, it is essential to take a critical approach to all the medical headlines that are presented, and especially those making extraordinary claims.

The well-established and professionally vetted website, Healthline, has a very good primer on the subject of spotting fake medical news. It could hardly be more topical. There is nary a day that goes by when some website or other isn’t making absurd claims about the latest health craze or danger. Whether it is bloating the risks of GMO foods or misrepresenting the cancer risk from eating red or processed meat, there are more sources out there in the ether intent upon cherry picking data or simply removing it from context in order to sell their point than there are serious outlets for the reporting of science news. Part of the problem with this is that science news isn’t usually considered very sexy or commercial, but a bigger problem is that it is generally difficult for most people to fully understand.

And capitalizing on that, we have opportunists like Chris Wark, a self-proclaimed guru on defeating cancer without chemotherapy. Duly note, of course, that Mr. Wark was cured through surgical intervention and, while chemotherapy was recommended as an adjunctive treatment to lower the risk of future metastasis, there was no indication that he had any actual, existing metastases that needed treatment. To put it bluntly, he was one of the lucky colon cancer patients who had it all taken out without any recurrence. This had nothing to do with whether or not he received chemotherapy, and there is no way of knowing how he would have responded to such treatment or whether his “lifestyle” choices have had any bearing whatsoever on his post-surgical health. Continue reading Common Sense, Clarity and Wellness Warrior Lies

Chemo and I Had a Pretty Good Run

My recent post on dealing with change and adversity was inspired in no small part by a change I am facing in my own life, one rife with uncertainty and heavy with anticipation. The last CT scan I had showed that my primary tumor, the one by which we gauge progression or lack thereof, was still within the technical boundaries of business as usual. That is to say, its lateral dimensions had not changed significantly since the previous scan, and overall had not grown enough over the similar measurements from a year or two years ago to precipitate anxiety. But CT scans are, for lack of a better term, a bit fuzzy. The images are fairly clear, but the data is difficult to measure with absolute precision.

My first CT scan machine from October 12, 2014, and still one of the more peaceful places I know. I have taken about a dozen rides through that hole by now.

Because CT scans are essentially three-dimensional, but are viewed on two-dimensional screens, comparisons between scans are inherently imprecise. The angle of a subject’s body, how inflated the lungs were, the position of the subject within the imagining chamber, all figure into subtle differences between the final scans. On top of that, because the images are basically multitudes of cross-sectional snapshots, a comparison must be made by selecting the closest approximation to the “same” image between scans from different times. I’ve looked at lots of these — in fact, I keep digital copies of all my scans for reference or posterity — and I’ve used the tools to line up and measure my tumor as best I can.

And in two dimensions, at the standard viewing cross-sectional approximation, my mass looks very similar from scan to scan, every three or so months since this process began. My chemotherapy was clearly doing what it was intended to do, which was to prevent progression of the disease. Progression is generally defined in terms of the length of the tumor, but we all know that tumors are bundles of cells that grow and change along more than just one axis.

I was never under any illusion that the chemo would cure me — there is no official cure for Stage 4 Lung Cancer. Any time that the chemotherapy could afford me by maintaining stasis has been considered a luxury and at over two and a half years on this particular regimen, I have been the longest continuous success case that many on my medical team have known. So the next time I see most of them will be a special, bitter-sweet occasion.

Because the time for change has come. Continue reading Chemo and I Had a Pretty Good Run