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Published on April 8, 2021
Staying Proactive During Watch and Wait & Understanding Secondary Cancer Risk
Being diagnosed with chronic lymphocytic leukemia (CLL) can bring about many questions for patients and their families. Could I be at risk for a secondary cancer down the road? What does it mean to be put on watch and wait? How can I be proactive about my health? What signs and symptoms should I watch for?
In our recent "Evening with the Docs" program, CLL experts answered all of these questions and more about living with CLL. Listen in as host and patient advocate Michele Nadeem-Baker leads an informative discussion with Jennifer L. Cultrera, MD, Medical Oncologist/Hematologist and Raul E. Storey, MD, Medical Oncologist/Hematologist at Florida Cancer Specialists.
Support for this series has been provided by AbbVie, Inc. and Genentech, Inc. Patient power maintains complete editorial control and is solely responsible for program content.
Transcript | Secondary Cancer Risk & Being Proactive During Watch and Wait
Michele Nadeem-Baker: Welcome to Patient Power's Evening with the Docs. I'm Michele Nadeem-Baker, and I am so excited about our evening here. We have hematologist-oncologists with us, and to talk about chronic lymphocytic leukemia or CLL. Dr. Jennifer Cultrera, could you tell us a little more about yourself?
Dr. Cultrera: Thank you. I graduated medical school from University of Miami, the great old Jackson Memorial Hospital, and finished residency there and went on for fellowship in hematology and medical oncology at MD Anderson Cancer Center in Houston, Texas.
I went to become a lymphoma leukemia specialist at Moffitt Cancer Center for the next four years. And I then decided to come over to the dark side of community oncology, which was one of the best things I did because I love being a doctor to my patients and being right there with them through their entire journeys with cancer.
Michele Nadeem-Baker: Thank you. Dr. Raul Storey, if you could tell us a little bit about yourself for our audience.
Dr. Storey: Absolutely. I'm a hematology-oncologist. I'm based in Vero Beach, Florida. And I was trained in different hospitals and universities in the United States, including MD Anderson, Texas Tech University, and University of Louisville. Now I have been able to work with this beautiful community of patients.
Michele Nadeem-Baker: Well thank you, both. So here's our last poll. Do you worry about getting a secondary cancer, or have you already had one? Is CLL your secondary cancer? Here are the answers: worried about it, not worried, I have gotten a second cancer, CLL is my second cancer. 43 percent are worried about a secondary cancer, 43 percent, it’s tied there, are not, and seven percent have a second cancer, seven percent, CLL is that second cancer.
Now, you're in Florida. As CLL patients, skin cancer is a huge concern as a secondary cancer. We have to be watched very carefully as CLL patients. In Florida, that's even more of an issue. Dr. Storey, how do you help patients out with this and on trying to help them not get skin cancer? And have you seen a lot of this for CLL patients?
Are There Secondary Cancer Risks for CLL Patients? What Is Your Advice for Them?
Dr. Storey: Yes. Due to our demographics in Florida, of course, the majority of the people are exposed to the beach, to the sun. There are many things they can do to prevent these kinds of skin cancer is basically to wear sunscreen and remember to reapply it frequently, every couple of hours. To wear long sleeves, big hats when they're exposed to the sun, try to avoid the midday sun. And if you're going to be walking or exercising on the beach, try to go early in the morning or late in the afternoon. But in regards of developing secondary cancers, it's important to know that once a patient has one type of cancer, this individual will be more prone to develop a second and a third one, and also, being exposed to some of the treatments we have available for CLL, like the chemotherapies we historically have been using for CLL, also has an increased the risk to induce further cancer down the road. So, to the regimens like FCR, which are one of the classic regimens we have used for CLL, has more increased the risk for patients to develop leukemias in the future, other types of leukemia. Those are the types of things we need to keep an eye on, the patients that go through the journey of being treated for cancer or where they go through cancer without treatment, because they are more prone to develop a different type of cancer. And we need to be more cautious with the screening tools we have available. And for the patients who continue to have a close observation by their doctors.
Michele Nadeem-Baker: Dr. Cultrera, we have a question from someone who's 43 and just diagnosed. What can they do to be proactive during watch and wait?
How Can CLL Patients Be Proactive About Their Health During Watch and Wait?
Dr. Cultrera: I think one of the most important things, what they can do during this watchful waiting or careful observation period, is to do what they're doing now. To engage organizations like Patient Power and support groups, where you can get a meeting of the minds, both patient-wise and with physicians and scientists, so that they can learn about their disease. They can learn about what they need to look out for, to know when they need treatment. And to know what's on the horizon, because it's very hard for you to look down that tunnel and see that light and say, "Well, what is it? Is it a train or is it my salvation? Or is it this?" And knowing the data and knowing that there are these drugs out there and that the course of treatments are changing so rapidly, I think does help patients in their minds go through these careful observation periods.
Education is power and any which way you can get it is good. Now in that same vein, I don't agree with Dr. Google, but it's a double-edged sword. So really, it's getting to know the areas that you can go on the internet and get some sound advice. I point my patients to definitely your organization, I point them to – the National Comprehensive Cancer Network has an excellent workbook on CLL. You guys can provide that website, but Google it, nccn.org. Leukemia & Lymphoma Society, Lymphoma Research Foundation, these are all organizations. And ask your doctor. I mean, we are plugged in to all of the kind of need-to-know for the diseases that we treat. In my practice, I'm able to give them a kind of cheat sheet of all of the organizations where they can go to for patient advocacy and support, because some of these organizations actually provide financial, not only emotional, but sometimes financial support for transportation, for drug costs.
So, for that particular young patient, I would say, just educate him or herself as much as she can. For me, I tell patients try to eat clean, stay away from processed foods, keep yourself at your good BMI, stay active because these are things that keep your immune system sound. You're going to help your own body fight the CLL over time, and definitely engage with your doctor to get a nutrition program underway. And I know there's a lot of organizations that have integrative medicine that are built into their oncology care and that's something that I find that you know, is a great asset for patients to engage with their doctor, to get pointed in those directions.
Michele Nadeem-Baker: Dr. Storey, do you have anything to add to that about what you suggest for your patients and how they can be proactive and staying as healthy as possible?
Dr. Storey: Yes, absolutely. On top of what Jennifer mentioned, I encourage my patients to participate in the support groups. Support groups like what we're having here. Because it's very important and it's very eye-opening when you are able to discuss what you're going through with people who have gone through the same journey in different ways. So maybe the person that you're talking to has a similar path of the one you are going through, and maybe has a very different one, that you can learn from it. It's very important to participate in support groups, like the ones you have, to get to share your experience and get to learn from other people sharing their own journey.
Michele Nadeem-Baker: During watch and wait, as an example, these are the types of things that can help patients and help them learn about perhaps what types of exercise are helping people or what they found has helped them during their watch and wait time. And also, for that matter, during treatment and how they're feeling more energetic. I have found that those help a lot as well and staying active.
Well, this has been fabulous, Dr. Storey and Dr. Cultrera. We always believe that knowledge is the best medicine of all. Thank you for being with us.