Patient Spotlight: Rich Gopen Bridgewater, Massachusetts, USA
Rich Gopen is an ALK patient and one of our match donors this Lung Cancer Awareness Month (LCAM), which means that whatever funds you donate or raise will be doubled thanks to Rich’s and others’ generous match donations. We interviewed him about his journey with ALK+ lung cancer, what motivates him, and his hopes for the future.
1. Tell us a little about yourself - your personal and professional background - and your journey with ALK+ lung cancer so far.
I’m 73. I’ve always had a wide range of interests and I’ve pursued several careers that absorbed, challenged, and rewarded me over the course of almost fifty working years, though I’ve never found my special calling in life. In this regard, I envy my wife, who has loved her work as an adult education teacher right from the start and until her retirement forty years later. At 60, I began my final career as an occupational therapy assistant, but nine years later I was easing into retirement, when the pandemic hit and pushed me to refire fully. So, in April 2023, by age 71, I was already retired when I was diagnosed with ALK.
Of course it was a shock, but I feel much luckier than so many folks who are diagnosed in their prime years and with young families or other dependents. (By choice, we have no children.) And I am far luckier than those folks who receive this, or any other daunting diagnosis, who are not active and otherwise “healthy,” who have very limited financial resources, or have nobody with whom to share their complex burdens. The fact that I have such a wonderful wife, a marvelous sister, a fully engaged extended family, concerned friends, a world-class ALK-specialized oncology team, and my extraordinary ALK Positive Facebook group all remind me that I am far from alone in this journey.
Yes, my diagnosis was a shock – quite out of the blue. Like many, I had no particular respiratory symptoms, no family history of lung cancer, and I’d never smoked. In fact, I was being scanned due to intestinal complaints, and fortunately, the scan included a portion of my lungs, which showed a golf-ball size tumor that was non-existent on a lung scan four years earlier. After two biopsies, I was diagnosed with ALK NSCLC at stage 3A. My treatment began with Alectinib, followed by surgery (left lower lobectomy and removal of mediastinal lymph nodes), followed by four infusions of chemo, followed by my current regimen of Alectinib (at half the standard dosage due to my high creatinine and very low heart rate numbers). So far, since treatment, my scans continue to be clean, and while I do still have some side effects from Alectinib (fatigue, controlled constipation, maybe occasional brain fog), I lead a pretty normal and healthy retired life (pickleball, reading, social media, volunteer work, woodworking). If I were ten years younger, I’m sure I’d be able to work at least part-time, though at 73, I’m happy not to have that pressure.
2. What do you know now that you wish you knew back when you were first diagnosed? What would you advise a newly diagnosed ALK patient?
On an existential level I’ve discovered that I am able to productively handle the knowledge that I am mortal and could die at any time. I’ve found that rather than falling to pieces, I’ve been able to mostly use what time I have left wisely, as well as give myself permission to just relax and “exist.” I may spend time on self-enrichment, to promote my physical well-being, to help others in their life struggle, or just to have fun. Sometimes I do “nothing at all,” which might include reading, watching television, hanging out on Facebook, napping, meditating, or just plain daydreaming. It’s all good. Before I was actually faced with this likely fatal disease, I could only imagine what it might be like to be in such a situation even though, in truth, we all live with the reality that we are all mortal. People deal with that in a variety of ways, and most, especially when they are young, avoid or even deny that entirely – unless they have friends, relatives, associates, or patients who die or are actively dying. I say “actively dying” because, while we are all passively dying as a condition of life, it is mainly those of us who have some sort of “death sentence” who engage our own death as an active process. The fact that we may not have a designated time limit is, in a way, irrelevant, since we all are living on “borrowed time,” regardless of our personal spiritual views.
Because of what I have learned through my own experience in diagnosis, I’ve become a sort of proselytizer for biomarker testing of tumors. Just today I read a post in my Facebook newsfeed (not in ALK Positive) from a well-educated professional informing his friends that he had been diagnosed with stage 4 lung cancer. It said nothing about the specific cancer type, but his tone was fatalistic and negative. I asked him whether he had biomarker testing and other specifics, but he had no idea what I was talking about. I made it clear that this information was crucial to an accurate and effective diagnosis, treatment, and prognosis, and I offered myself as a good example. I’m not sure that my message got through since he seemed more focused on his shock and pessimism over the lung cancer diagnosis than to take these crucial questions to his oncology team. I hope this is a developing story.
So how would I advise a newly diagnosed ALK patient? First, I would repeat to them my own experiences as described above (although their recent diagnosis would suggest that they are now at least aware of biomarker testing). Secondly, I would suggest that they consider how lucky they are, not only to have been diagnosed (hopefully) in time to benefit from effective treatments, but also to realize that we are living in a time when the scientific awareness and medical technology converge to provide such amazing diagnostic tools as tissue and liquid biopsies, CT and PET scans, biomarker identification, and treatments like TKIs, minimally invasive surgery, target radiation, etc. Had we been diagnosed with lung cancer just twenty years ago we would have likely been lumped together with all lung cancers and condemned to ineffective but life-destroying regimens of chemotherapy and/or non-targeted irradiation with a prognosis of 1-2 years. How extraordinarily lucky we are!
3. You have very generously offered to be one of our match donors for Lung Cancer Awareness Month (LCAM). Match donations are very important because they offer an additional incentive for people to donate to our cause by doubling their impact. What inspired you to donate to ALK research through ALK Positive, Inc?
I am at a stage in life when thinking about the meaning of my life and legacy – via estate planning, as my relationships, my past career, and how I spend my remaining time and other resources – occupies far more of my time and energies than this did even a few years ago. In terms of charitable giving, I have always tried to be generous with my limited “disposable” resources. This past year, in particular, I have given to organizations and candidates that most closely match my political views, and I will continue to do that on a smaller scale now that the “election season” is winding down. As to certified non-profit charities, there are probably hundreds whose values and goals I support, but I realize that there is only a limited number that I can affect in any meaningful way with my limited budget. This is why I focus my annual giving (i.e., at least once a year, every year) to about a dozen qualified, non-profit charities. And like most (all?) of you, I had never heard of ALK Positive, Inc. until I was hit in the face with my diagnosis. Now that I am fully aware, and admittedly partly for selfish reasons (i.e., maybe further advancements would directly benefit me, as well as many others), ALK Positive, Inc., quickly rose to the top of my list, in terms of both priority and amount given each year. And that fact that I could be a relatively big (or medium-sized) fish in a small pond would mean that I can feel like I have a bigger impact as an individual (and match donor) than I could in a larger, more famous and well-endowed disease fund.
4. What excites you most about the research that your donation is going to help fund? What are your best hopes for the future?
What excites me most, of course, is the prospect of a cure for cancer, in general, and ALK, in particular – whether in the form of a vaccine or medical treatment, a gene editing process, or something else. It’s particularly heartening to know that even though our cancer is relatively rare, ALK researchers are in the vanguard of cancer research in general, and the successes they have achieved have impacted the research in many types of cancer.
5. We are encouraging anyone who is willing and able to donate, or become a match donor, or fundraise, or advocate for our cause during this year's LCAM and beyond. As someone who has done it, what would be your message to the people reading this who may be thinking about it?
I think any ALK patient who is able to donate or become a match donor for ALK research should do so on a regular basis. Such donations affect countless others, while also helping oneself. Even if they think the amount they can donate is small, any amount is meaningful, and when performed as a match, and especially on a regular – say annual – basis, it also helps the organization's cash flow and financial planning. I am particularly proud of my fellow “ALKies” who realize that while ours is a rare disease that gets little attention from Big Pharma or the news media, it is up to us to stand up and be counted. Fortunately, our impact far exceeds our numbers.
Interview by: Christina Weber