How would you describe your experience with CLL?
My journey with CLL is similar to that of many others. I went to the doctor for a routine blood test that unexpectedly revealed cells in my blood were typical of chronic lymphocytic leukemia. The next big shock after my diagnosis was to find out my cancer was incurable and at the time, in 2005, there were limited treatments available to even prolong my life. Furthermore, it was incredibly surprising to learn the default approach for many patients diagnosed with CLL whose disease is not aggressive was – and still is – to “watch and wait” instead of beginning treatment immediately. Unfortunately, I was one of the unlucky ones with aggressive disease.
My care team and I tried some experimental treatments. I enrolled in a Phase I clinical trial of a medicine that didn't even have a name yet. After seven years of disease control, I relapsed and entered another Phase I trial, which led to another three and a half years of disease control.
Today, I'm doing very well, thanks to the progress that’s been made in the treatment of CLL.
As for my patient advocacy work – that part just happened naturally. My original aim was to support CLL patient education and research, but I didn’t see anybody really stepping up to the plate and being an advocate for patients the way I thought was needed, and suddenly I was an advocate.
Based on your own experience, what advice do you give to others with CLL as they are navigating a diagnosis?
The experience can be overwhelming for someone newly diagnosed with CLL, so one of the first things I recommend is to take some deep breaths and start becoming familiar with the disease. Learning about the disease is an iterative process, so I encourage others to start by learning the vocabulary, acronyms, and other key terms. It’s good to frontload knowledge on the disease because, as we say at CLL Society, smart patients get smart care. Join a CLL support group. I would also recommend working with someone who specializes in CLL – a true CLL expert – to make care decisions. We’re inclined to believe that all physicians are experts by nature, but CLL is a rare cancer and some may not be well-versed in the latest developments in therapy.
The treatment paradigm has quickly shifted in such a radical and positive way, it’s important that doctors understand the latest developments. For example, it’s important to use tools such as prognostic markers or appropriate predictive testing, which can have a big impact on selecting the best therapeutic strategy for an individual patient, in the management of CLL.
To help ensure patients are getting advice from the appropriate subject-matter expert, at CLL Society we encourage all patients to seek a second opinion with a specialist, whether that be consulting a physician through the CLL Society’s free Expert Access program available via our website or through their own research. Results from our program indicate 80% of patients made a change in their treatment plan after consulting an expert virtually.
What role should self-advocacy have in the blood cancer treatment process?
No one has more skin in the game than you have as a patient. I think it’s good for a patient to receive support from others to help with researching different therapeutic options and staying up to date, but it’s important for those with blood cancer to make their preferences known. Asking yourself questions about what you want out of treatment is an essential part of the decision-making process. People who have cancer need to engage with their healthcare teams and advocate for themselves to avoid letting other people, however well-intended, make assumptions about their preferences.
What do you see as the biggest barriers keeping every person with CLL/blood cancer from receiving the highest quality of available care?
The low-hanging fruit in managing CLL is ensuring that all patients – no matter what type of insurance they have, no matter whether they live in a city or a rural setting – have access to the latest best possible care. That is not happening for many reasons. For example, community hematologists and oncologists are extremely busy caring for many cancer patients with common cancers and may not have time to stay up to date on the latest CLL treatments. To address this issue, the CLL Society developed online resources including our "Test Before Treat™” hub and our many fact sheets on CLL and COVID-19 available for free on our website. These education materials and resources are designed so that patients can bring them with them into the doctor's office. They can help guide patients in conversations with physicians, and have appropriate references so the doctors know the information is from a trusted source.
What are the remaining needs for CLL patients?
We need more therapeutic options for patients who relapse while on existing therapies. When patients’ disease returns while taking the current prominent forms of therapy for CLL, and there are growing numbers of these patients, they have limited additional treatment options, many of which are still experimental. So those whom I call "double refractory patients" – patients whose first and second or later lines of treatments were ineffective or stopped being effective – need help and are searching for clinical trials or searching for novel combinations.
Another major barrier those with blood cancer face is our status as immunocompromised individuals. Before COVID-19, most people like myself saw their CLL as an annoyance we had to deal with. We may have had to take pills every day, but we could still participate in activities we enjoy doing – travel, skiing, eating at restaurants, doing whatever we wanted. But during the pandemic, it became glaringly evident to us that being immunocompromised was going to prevent us from joining those things again. The CLL treatments that we have do a great job of reducing our disease burden and knocking our CLL down, giving us longer lives, but they don't seem to allow us to reconstitute our immune system. We're highly susceptible to COVID-19 and other infections like pneumonia, which is still a leading cause of death in CLL patients. So I see ways to reconstitute our immune system as a major need.
Is there anything else you’d like to share with the larger CLL community?
I've been saying this to industry and researchers since I entered my first clinical trial: I'm extraordinarily grateful for the way that the scientific community and the healthcare industry have cracked the biology of CLL and found ways to target cancer cells leading to improved outcomes for patients like myself. But your job is not done.
To use a baseball analogy: Don't leave me on third base. Get me home! Find a cure! Don't give up when the work isn't done. We have great molecules, we have great combinations, but we don't have curative therapies.
My biggest hope is that we can find a curative path for CLL in my lifetime. I’m lucky to live with a manageable case, but many are not as fortunate. So I encourage continued partnership across the cancer care continuum to help continue moving care forward.