I am now into the third month of my clinical trial for poziotinib. After the first two months, I had to take two weeks off for recovery from the rash it gave me. I am, however, glad to be back on the drug for the very simple reason that it was effectively killing the cancer within me. That is not a claim I make lightly, or, sadly, have had reason to make much at all over the past year.
When I was first put on chemotherapy back at the end of 2014, it was because there were no targeted therapies or immunotherapies available, either on the market or through clinical trials, that were likely to work for me. Chemo seemed to be the only option and, in some ways, it felt like a last-ditch effort. My tumor was considered inoperable, the metastasis had spread too far and wide, and radiation was not even being presented as an option.
While I was primed for a limited response and the possibility that I might only get a few months extension from the process, it turned out that chemo kind of worked for me. It worked well enough, in fact, that I would stay on it for over two and a half years — most of that time, simply keeping the cancer growth in stasis. There was talk of the possibility of being on that drug for five or more years at one point, but not long after the two-year mark I began to notice small changes in my scans. Very small, but changes, nonetheless. Continue reading Week One: The Oozing Begins→
Crouched over the kitchen sink, I surged with a repressed groan, stifling the convulsive impulse as tears broke free; I cried, uncontained, momentarily unaware why. I was so used to keeping it in, I had become disconnected from what I was actually feeling — ironic, because what I was feeling right then was disconnected.
I did not recognize my body. This vessel in which I was contained made no sense to me at all. It responded to my thoughts and commands, but it felt completely foreign. Looking down at my arms, my hands, my fingers, I recognized nothing. They could hold the dishes I was washing, turn the knob on the faucet, even scrub with the brush. But there was a clumsiness about them, an awkwardness that was hard to explain or rationalize, except to know immediately that none of that was part of my body. None of it was Me.
Such is the effect of bodily changes that occur under cancer treatment. I was experiencing a slight case of dysmorphia, that feeling of certainty that you are not in the right body. It passed, but the emotional impact lingered. Continue reading This Is Not My Body→
I have friends who are long distance runners and I have watched them struggle through their pain to achieve their goals. Although I used to train for both cross country and track way back in middle-school, I can no longer run. But I do understand a thing or two about the process. And I appreciate what it means to endure hardships in search of a personal reward.
Beginning a Clinical Trial
At the end of May, I began participating in a clinical trial for Poziotinib, a new targeted therapy that works on mutations in the EGFR and HER categories. Naturally, within days of my May 23rd start, I had already begun exhibiting side-effects from the new medication. The resulting rash has persisted and spread, morphing into a completely new experience for me. I thought at the time that the minor ordeal I had in preparing for the clinical trial would have been the biggest challenge of the trial itself: first I went in for a “simple” needle biopsy procedure, then I had to stay to deal with the effects when things did not go exactly according to plan. The experience even inspired an opinion piece for the Philadelphia Inquirer. But I passed over that (still relatively minor) road bump and ran headlong into the clinical trial and resulting crash back into Rashville.
Having a rash does not sound all that bad in the grand scope of things. A little salve, a dollop of willpower, and it should be easy to weather. Itching too much? Slip on some gloves or spray it with lidocaine. Rashes pass. At least it is not nausea or debilitating pain or sleeplessness. Well, at least it is not nausea. Continue reading Endurance and Payoff→
Let’s get one thing straight: emotions do not cause disease. The fault of your physical illness very likely lies with something other than you. The whole notion that anything from kidney stones to cancer could be traced back to an emotional block, repressed anger, wrongs un-righted, or any other random psychological hurt from this life or a past one, is so corrupt that it should never be given credence by any rational being. Yet throngs of people with well-intentioned sounding titles like “life coach” or “healer” spread these malicious little bits of victim blaming as if they were offering salvation in a bottle of snake oil.
That said, I want it to be clear that not everyone who identifies as a healer is guilty of either victim blaming or willfully misleading those who they are trying to help. I’ve known incredibly sincere, warm, compassionate people who do their absolute best to improve the health and well-being of others through a wide swath of tools and approaches, arguably with strong results. And, frankly, many people need some form of guidance in their lives and have relied successfully on many such “coaches” to get where they need to be. I’m not condemning whole industries or forms of practice or even job titles here; this isn’t about valid occupations, but rather about those who choose to exploit the fears and insecurities of patients under the guise of offering miraculous cures through attitude adjustment. Continue reading Emotional Illness→
Before I get into the details of this new leg of my journey, I’m taking a moment to reflect on the side-effects of the past. In August of last year (2017), I stopped taking chemotherapy due to signs of progression. After about a month of cleaning out my system, I noticed a serious boost in both my mental and physical energy levels. My body began shaping up. I felt really good. And I started my first “targeted” therapy, the drug Gilotrif (generic name, afatinib).
Gilotrif was highly promising at the time. It had shown some level of effectiveness on the HER2 mutation in cancer studies but was still off-label for my use because it was designed to target a very closely related mutation. I loved it at first, however, because I kept feeling better and — in comparison to my 2 years and 8 months on Alimta (generic name, pemetrexed) — there was just an amazing lack of initial side-effects. Alimta had been fairly easy to tolerate overall and I had no real complaints considering how well it had worked. But I did have some skin and digestive issues, as well as persistent fatigue, that plagued me every month. Toward the end, the skin issues were particularly bothersome, and I was beyond thrilled when they cleared up. Continue reading The Rash Is Back→
Because I am sometimes spread more thinly than others across the social media spectrum, I need to add in one of these aggregate posts to link over to articles you might have missed because they were not posted here on my blog. In order to maximize my ability to target other patients and caregivers, I have published quite a lot on LungCancer.net while reserving the space here on my blog for more personal or passionate material.
While I hope that my readers are keeping up with the wider range of my work and social comments either by following my author page on Facebook or reading my Twitter feed, it is still easy to miss new material in these over-saturated times.
So, without further ado, here are links to some of my recent material you might have missed. Don’t forget to option-click so that these links open in a new tab, making it easier to come back to this page for more clickety-clicking fun! Continue reading Recent Posts and Updates→
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.
It all started with a pain in my back. I was a mess. Every day, the pain grew and spread until it ran down my entire left leg and shot up into my chest. What I had hoped might be a simple pinched nerve turned out to be the result of a new metastasis in the muscle of my lower back, conveniently pressing gently up against the sciatic nerve like a feather made of barbed wire attached to a cattle prod.
To treat this nasty beast, the only practical solution was to zap it with radiation — something that I could barely wait to begin doing. By the time this was presented as an option, I was in such agony that surgery would have been appealing. Radiation, by comparison to virtually anything else, sounded like a relief. Continue reading Radiation and Me, A Love Story→
As a lung cancer patient, I certainly receive a fair amount of emotional support. Maybe some of it is more well-intentioned than helpful, maybe sometimes I don’t get what I really need, but I know it is there and I am ever-grateful for it. But as a patient, it is easy to find support in many ways, through friends and family, through community, through blogs and online forums and in-person support groups. Patients are obvious recipients of support, people who clearly need it for what we are going through. But there is another class of individual who carries an equal or higher burden and is consistently overlooked in the need for support: the caregiver. Continue reading Support Where It Is Due→
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
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.
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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