Reliable Information and Advice for Patients With CLL
Following a discussion on where to find reliable information on chronic lymphocytic leukemia (CLL) and treatment, participants share their closing thoughts.
PUBLISHED February 26, 2020
Harry P. Erba, M.D., Ph.D.: We’ve touched on this before, but we’re coming to the end of the program. I think we clearly couldn’t cover everything in this short amount of time, and there’s a lot of information out there and there’s a lot of misinformation. I’d like each of you to tell me and tell our audience, what sources are out there for information that is reliable? I’ll start with you, Ian. What do you tell your patients?
Ian W. Flinn, M.D., Ph.D.: Where to go?
Harry P. Erba, M.D., Ph.D.: Where to go to get information, or not to go maybe.
Ian W. Flinn, M.D., Ph.D.: I think some of the more mainstream venues such as the LLS, the Leukemia & Lymphoma Society, or the CLL Society, which is a dedicated group toward CLL [chronic lymphocytic leukemia]. You’re going to get very accurate information there. I think those are probably the two places that I tell people to go.
Harry P. Erba, M.D., Ph.D.: Anyone want to add anything?
Doreen Zetterlund: I would echo that. CLL Society is specific to CLL; LLS in general. But it’s so important to educate yourself and we usually have time, so don’t feel rushed. Take time to educate yourself and make the right decisions for you.
Harry P. Erba, M.D., Ph.D.: Camille?
Camille Ballance, MSN, FNP-BC: I agree.
Harry P. Erba, M.D., Ph.D.: I always like coming back to the point that doctor means teacher, and the most important thing that we can do as physicians is teach our patients what we know about the disease, what to expect, and the treatments. Every cancer patient deserves the time from their physician and the physician’s team to get that. So often, the physician’s team will have nurse practitioners, nurses, and pharmacists who can help. Pharmacists are a great ally in the clinic who can give you real information about the medication that you might be prescribed. But advocate for yourself.
The patient should advocate for themselves, and if you’re not comfortable with the first or the second doctor who’s not giving you that time, find someone who can give you that time because you deserve it. Come with your list of questions. Make your doctor sit down and answer them. But that takes a lot, and patients have to advocate for themselves. You were lucky, Nathan. You’re a nurse. You asked for that CBC [complete blood count] because you knew, and most of our patients don’t have that education. It can be a challenge, but our patients should feel free to advocate for themselves as well when they see their physician. Well, this has been extremely informative. Before we end this discussion, I’d like to open up the floor and ask each of you to provide some final thoughts. I’ll start with you, Ian.
Ian W. Flinn, M.D., Ph.D.: My final thoughts are that our therapies today are radically different than they were a decade ago, and frankly they’re different than they were a year ago. We’re now looking into new combinations, new regimens, and I think tomorrow they’re going to be even better than they are today. And so I think the thing I’d like to leave people with is that there’s tremendous hope in therapies for this disease.
Harry P. Erba, M.D., Ph.D.: I completely agree. Nathan?
Nathan Ferguson: As Dr Flinn said, it may sound bad, but I tell people that if you’re going to have CLL, there’s never been a better time. And 10 years from now, it’s going to be even better. The person who was diagnosed 20 or 30 years ago had hardly any of the options that we have today.
Harry P. Erba, M.D., Ph.D.: Lisa?
Lisa Ferguson: I want to just for a second focus on the caregiver. It is important to support the patient and be there for them. But it’s also important to remember that you have feelings about this, too, so finding your outlet and your coping mechanism is really important. I know self-care is a really big buzz word, but it is really important to make sure that you’re emotionally and mentally able to be the best person you can be so that you can support your spouse or whoever the patient is.
Harry P. Erba, M.D., Ph.D.: Camille?
Camille Ballance, MSN, FNP-BC: I completely agree with what everybody just said, but also do not be afraid to reach out to the care team, the providers, or the nurses if you need them. Write the questions down and make sure that you’re with a team that will take time with you if you need it.
Harry P. Erba, M.D., Ph.D.: Doreen?
Doreen Zetterlund: I would say educate yourself, and this is not a death sentence. We’re so fortunate to live in this time with these advances in medication. Live your life. Don’t forget to live your life.
Harry P. Erba, M.D., Ph.D.: I’ll add one final comment, and it piggybacks on what I was saying before. Your physician, your oncologist, and your team are there to educate you about the disease. And you are sitting in a room where you’ve just been told you have cancer, and then you hear what the teacher sounds like on Charlie Brown. That’s what you’re hearing, “Wah, wah, wah,” and that’s all you’ll hear. Bring someone with you. But in my opinion, don’t be afraid to record it. Obviously, ask your physician, but record it. Play it back later. It’s there as a reference for you. Some doctors feel very strongly about that.
Ian W. Flinn, M.D., Ph.D.: I used to have it happen much more often with people, and I would encourage them to do it for the reasons that you’ve outlined, but less so recently.
Harry P. Erba, M.D., Ph.D.: Well, thank you for your contributions to this discussion. On behalf of us all, we thank you for joining us. We hope you found this Cure Connections® discussion to be useful and informative.