Lung Cancer Research

Here is a little graphic to illustrate the disparity in research funding for lung cancer, one of the most deadly forms of cancer. Of course I don't mean to suggest that other types of cancer research should get less funding. I only mean to plead that lung cancer research needs more funding. If you are inclined to give, please visit my Lung Cancer Resources pages where you'll find links to various foundations.

Participating in Studies and Trials

One of the cool things about medical research is that some of it can be patient driven. For example, the ROS1ders (my tribe), are working with the Addario Lung Cancer  Medical Institute and Champions Oncology on a study looking at mechanisms of resistance to treatment among ROS1+ cancer patients like me. In order to learn more about these mechanisms, researchers need a greater number and variety of cell lines to study. The research relies on Patient-Derived Xenografts (PDX). In other words, patients voluntarily submit biopsy samples to these researchers in order to increase the amount of available tissue and data. This study was actually proposed by the ROS1ders in collaboration with researchers, so that's pretty exciting, and that's what we mean by patient-driven. The thing is, not all ROS1+ patients are aware of the study, so they don't necessarily know that, once they become resistant to initial treatment, like Xalkori, they can have another biopsy done and donate some of that tissue to our project. We're currently spreading the word through our ROS1+ Facebook group, and we'd love to get the word out more widely. That's a challenge, because we ROS1ders are sort of the unicorns of lung cancer; only 1-2% of lung cancer patients have this mutation. But, if you happen to be or know a ROS1+ patient, study information can be found here: Motivated Patients with ROS1 Cancer Initiate Global Research Study

Yesterday I heard a piece about cancer research in China on NPR: Doctors in China Lead Race to Treat Cancer by Editing Genes.  The story profiles a researcher and his patient, a man who is receiving an experimental treatment for Stage IV esophageal cancer. Researchers harvested some of the man's T-cells, edited them using a gene-editing tool called CRSPR so that they will fight cancer, and then infused the edited cells back into the patient. This story reminded me about the genetic engineering techniques also being studied here in the states. Research in the U.S. has been showing some promise as well: Car-T Cells: Engineering Patients' Immune Cells to Treat Their Cancers.

I get pretty excited and hopeful when I read about these new therapies, but, right now they are only working in a small percentage of patients receiving them, and even when they work, they don't necessarily keep working. So, these techniques are never referred to as "cures", but are called "treatments", which means that they might not eradicate the disease, but they can keep it in check. So, hope is always tempered by scientific realities.

I Climbed the Stairs

I climbed all the stairs today, all the way up to my third floor office. I haven't been able to do that since last November. Hooray for small victories. I also took a little walk in the community garden before I headed into the office and was treated to a hyacinth in full bloom. So, there it is: spring is certain now; I've seen her bright herald.

Back to Work

Clean desk. Not for long.

So today is my first day back to work since early December. I am amazed to be doing something that feels like "normal" life: getting myself up early and putting on "teacher clothes" instead of yoga pants, getting in my little car and buzzing up the interstate to the community college where I work, parking by the campus community garden (the subject of so many favorite photos I have taken in the past couple of years), walking into the Humanities Building, unlocking my office, dropping my book bag on the floor and turning on the lights, fetching water for my electric kettle and making tea, settling in to check emails and get ready for classes. The best part has been all the heartfelt and gracious greetings from colleagues. And of course it's great to see the students bustling to and from classes and hanging out in the lounges. 

I'm so grateful for the colleagues who have covered my assigned classes since the beginning of the term; I know the students in the classes I am picking up have been well taught in these early weeks of this semester. I've never been in a situation like this one, where I have had to begin teaching classes already substantially underway, but this week I'm just sitting in to get warmed up. I'll take the helm for real next week. Wish me luck!

Through the day, I've gotten to tell my story a few times to colleagues I've not seen in awhile, and I also decided to go ahead and tell the students why I've been out. Awhile ago, I thought that if I returned to the classroom, we'd all just say to the students that I was on "sick leave" and that I had gotten better, and was back. No details. But since I've decided to be more public about having lung cancer, it seemed reasonable to tell the students about it today when I was introduced to the classes. I am what lung cancer looks like. And, by all accounts today -- all the "you look wonderfuls!" and the "so glad to see yous" and "you look just greats" -- I guess I must look pretty good. I'm at my normal plump weight, and my skin color is good. I recently had a haircut and got new glasses. So, to look at me, I guess one wouldn't necessarily see a lung cancer patient. I don't look sick, despite having Stage IV disease, so yay! Another reason to be grateful.

I know I feel ever so much better since the last time I was on campus, which was early in January, just to grab a few books out of my office and talk with folks who would be picking up my slack. And to be honest, I wasn't certain then if I'd be able to return at all this spring. But as the weeks went on and I started getting past the side effects of Xalkori and feeling stronger, I became more hopeful. Then, last week's good news from the CT scan sealed the deal. I still have cancer, and will have it for the foreseeable future. My natural breathing isn't what it once was, but I each day I feel stronger and better than I did the day before.

So now, it's my hope to stay well enough to teach through the spring term. I am confident that will happen, and then we'll see after that. For now, I'm taking it day by day and week by week. Gratefully.

A Research Hero

Dr. Alice Shaw, a researcher at Massachusetts General Hospital and Harvard Medical School, is one of today's top doctors in the field of targeted cancer therapy. Patients from all over the U.S. (and some internationals) participate in her clinical trials, which have led to many important findings in treating cancer at the molecular level. It's amazing to think that just ten years ago, targeted therapy was in its infancy, and now researchers are developing second and third generation drugs to treat cancer more effectively. Here's a short interview with Dr. Shaw which appeared on the Lungevity website. I especially like the part where she discusses the fact that the next big challenge is to look at how to overcome  the mechanisms of drug resistance, a long-term problem with targeted therapies like the one I am on. These therapies typically work well, but only for a certain amount of time; then the cancer figures out how to outsmart the drug and comes raging back. When drug resistance is overcome, thanks to brilliant researchers like Dr. Shaw, the landscape of cancer treatment will shift dramatically. Instead of being a terminal illness, cancer could be cured (at best), or perhaps will just become a manageable chronic health problem instead of a fatal disease.

 Lungevity is a lung cancer research non-profit, and if you're in a giving mood, you can learn more about how to support their research here.

And the Results Are In

So hooray!  My CT scan shows a "marked decrease" in the tumors and adenopathy. The lump in my neck is totally gone! I have no progression of disease, no new metastases, no effusions, and all around high marks for treatment so far.  Though it's not the NED (no evidence of disease) I'd hoped for yet, I am optimistic that the next scan in a few months will show even more improvement because Xalkori has such a good track record. Maybe I'll have NED by summer. Wouldn't that be awesome? For now, I'm just grateful that my disease is responding to this treatment and that I feel well enough to have something that looks like a normal life. My doctor has encouraged me to go back to work and to "do things that keep your brain active," so off I go to do brainy things. Oh, and I can go back to the gym too. I don't plan on running any marathons any time soon, but I am thrilled by the prospect of walking this planet a bit longer with y'all!

Oprah Gets the Word Out

A couple of friends pointed me to this article, What Non-Smokers Need to Know About Lung Cancer, in Oprah Magazine. Author Aimee Swartz makes an important point: anyone can get lung cancer, even people with crazy healthy lifestyles. It's not just a smoker's disease. I'm glad to see a mainstream publication addressing this reality of lung cancer. Perhaps as more of us come to understand that we are all at risk, more effort and funding will go toward finding a cure.

I'd also argue that anyone who has this disease, whether they are smokers, former smokers, or never smokers, deserves compassion and the chance to benefit from the best research and treatment available. I wish we lived in a world free from the predations of the tobacco industry. But we don't. It's an industry that preys on the young and the disenfranchised, an industry that deliberately creates  addictive, life-destroying products and markets them to the most vulnerable members of our society. Until that machine is destroyed, we'll need to continue to treat people who have tobacco-related cancers with the same dignity and care we are inclined to give never smokers. That is how we strive to end the stigma of this disease.

The March issue of Oprah has another feature on lung cancer. This one goes into some detail about treatment, especially the use of tyrosine kinase inhibitors (TKIs), which is the sort of treatment I am currently taking. It's a hopeful piece, and I'm glad this media queen is helping get the word out.

Brilliant Interview with Kate Bowler, Religion Scholar and Cancer Survivor

Thanks to Terry Gross and Kate Bowler for this wonderful Fresh Air interview about living with Stage IV cancer as a person of faith. Bowler has written a couple of books I'm looking forward to reading. The first is Blessed: A History of the American Prosperity Gospel. Her most recent is Everything Happens for a Reason, and Other Lies I've Loved, which deals with her life as a cancer patient. Thanks to my friend Cindy for letting me know about this interview!  Here's a link to Bowler's wonderful blog.

Scanxiety

I love how I keep learning all kinds of new vocabulary since I've found myself in Cancerland. So, tomorrow I have my first CT scan since I began treatment. From reading other cancer blogs and patient forums, I've learned the word for how one feels the night before an imaging procedure.  Scanxiety. Because I want good results, of course. Ideally, I'd like a "clean scan" showing no evidence of disease (NED), but it's probably too early in my treatment cycle for that. So, I'll settle for shrinkage. Lots of shrinkage. Melting tumors. Yes please. Results on Wednesday.

By Way of Explanation

Welcome to Sojourn & Stardust.

In November of 2017, I was diagnosed with Stage IV adenocarcinoma, a non-small cell lung cancer. Presently, it is not a curable cancer. When I got my diagnosis I didn't want to tell people. I didn't post anything on Facebook. I didn't tweet it. It took over a week for me even to tell some people in my family. I was freaked out and terrified, and I wasn't so sure I would even begin making sense as I tried to let those dear to me know what was happening. Eventually, I did start a Caring Bridge journal, so that family and friends could keep up with what was happening in those earlier days. I liked some of the privacy protections Caring Bridge offered, and I was grateful to be writing for a small, intimate audience.

But as the weeks went on, and as I got stronger as a result of treatment with a targeted therapy called crizotinib (trade name Xalkori), I began to think more about what what it means to live with an incurable illness. So I attempted to Google myself into a better understanding of what my life with "terminal" NSCLC would be like, and I came across some blogs written by other lung cancer patients. Some of the blogs were inactive; the patients had died, so that was pretty depressing. But there were plenty of other active blogs being written by people like me -- regular folks -- and these blogs have been incredibly helpful to me. They are hopeful and funny and sad and real and informative.  And they are being written by people who have lived for months and years with this disease. Well, I thought, I'm a writer. I could blog, I suppose, about this whole cancer business. Maybe I too could be a little bit helpful that way. The problem was, I hadn't been really keen about the whole public persona thing - I haven't been so sure how I feel about being the person with cancer writing about the CANCER. And I'm still not so sure. But.

The more I read, the more I realize how vital it is that people with lung cancer become advocates for other people with lung cancer. This disease is one of the most stigmatized and under-researched cancers. Over these past few months, I have come to believe it is absolutely necessary for those of us living with the disease to speak out, to undo the stigma, and to advocate for more research if we can. I can, and so I am.

My intention is to use this blog space to tell a story bigger than my own. While I will post my treatment updates here, along with musings about what it's like to live with this disease, I also hope to post other news from Cancerland. There's actually lots happening in that part of the world -- research, advocacy, hope. Thank you for joining me on my sojourn here.