Chronic Lymphocytic Leukemia: Patient Support and Communication
Participants highlight the importance of proper support and communication while receiving therapy for chronic lymphocytic leukemia (CLL).
PUBLISHED February 26, 2020
Harry P. Erba, M.D., Ph.D.: I’m going to turn to both Doreen and Nathan for this next question. What are the good sides of support groups for our patients? What are the maybe not so good sides for our patients? My patients come back from support groups, and I hear different kinds of stories. Doreen, what do you think?
Doreen Zetterlund: I think it can be mixed. Overall, I think it’s beneficial, but you don’t have to be committed such that you go every single time they meet. You can go as you need it. I think you hear about side effects from other people that may not pertain to you, and that can cause worry, but then you can also hear good stories. You have to just modulate it to your own mood and your own needs. I actually belong to two support groups. One is CLL [chronic lymphocytic leukemia] specific with the CLL Society that really helps me with the education part of it. The other is a general cancer support group, and there are people there with all different kinds of cancers, and sometimes their outcomes are not as good. And so, it can be sad to lose people who you’ve become close to. But I think you have to know when to dip in and when to pull back, and that’s a personal decision.
Harry P. Erba, M.D., Ph.D.: Nathan?
Nathan Ferguson: I actually help run the Nashville CLL Society group, and she’s right, different people can take different things from it. We try to push their website. It’s run by a doctor. It has a board of other CLL specialists, doctors who review content. And of course, the LLS [Leukemia & Lymphoma Society] site has great resources as well. What I try to tell people one-on-one is that while many people have this disease, we’re all different. I can hope that I’m in a certain demographic in the data, but there are always outliers. And some people are very upbeat, some people have issues with depression. If you have an issue with depression, this is going to take more of a toll on you than someone who’s more upbeat. And it’s hard to see how I’m 45 years old, I was diagnosed and treated within seven months, and then you meet someone who’s had it for 20 years and hasn’t had to have any treatment. We’re all different. You try to offer what support you can.
Harry P. Erba, M.D., Ph.D.: I think the skill of the leader of those groups is really important in guiding the conversation so it’s not all negative or all positive but allows people to speak. And so find the group that you feel comfortable with.
Nathan Ferguson: And we always try to push having a CLL specialist in your corner. You may not necessarily need to see them for every visit, but they need to be part of your treatment plan, so that they’re making sure that you’re going to go down the right treatment path for you or that you’re given the options. And if you choose to go a different route, you’ve at least been informed and know the risks of each option.
Harry P. Erba, M.D., Ph.D.: Lisa, are you ready? I’ve been saving this question for you.
Lisa Ferguson: Oh, goodness.
Harry P. Erba, M.D., Ph.D.: One of the most common questions from my patients is, what do I tell my kids? Take a moment. Walk us through that. Nathan is diagnosed. How do you tell your kids, when do you tell your kids, how much do you tell your kids?
Lisa Ferguson: We have always been very open, especially with medical things or body things, health things. Because Nathan is a nurse, we’ve always talked about it in age appropriate clinical terms. So, when Nathan was diagnosed, we actually found out right before our oldest daughter went to a week of space camp down in Alabama, and I did not want to tell her before she went away for five days and had to worry about her dad. At the same time, our younger daughter was staying with my mother in Alabama while my older daughter was at space camp. So Nathan and I actually had a week where we could talk about how we’re going to tell our oldest. Our youngest was 5 years old, so she was pretty young, and I didn’t really think she was going to be as affected by it.
When we got our older daughter home, we were sitting outside on the back porch and we just said—not bluntly, but there’s no other way to say it—“Daddy has cancer.” And then we talked a little bit about what we knew at the time, which was not a lot, but I think by that time we knew it wasn’t as if he was going to die tomorrow. We told her, we said that there are a lot of treatments, there’s a lot of hope here, and she didn’t want to talk about it for a while. She went into her room, she cried, and then it just became normal. It started as a normal conversation. We talked about it at dinner time. Whatever our previous topics were, this became something that we discussed. And as Nathan learned new things, we would discuss it.
One of the things we do at dinner time is we talk about two good things and one bad thing from our day, so that our kids can focus on how there are more good things that are happening than bad. And it came to this point where every bad thing was, "Daddy has cancer.” After a few weeks of this, I said, “OK, the bad thing cannot be that Daddy has cancer. What else is going on? Let’s try to bring this back to how you still have to live your lives.” I think you have to figure out what works for each of your kids. When we told my oldest, my personality is that I want to talk about everything. Hers isn’t, and you shouldn’t force them to go against their personality. Eventually they’ll open up. They did start a father-daughter diary, where if she wasn’t comfortable verbally asking a question, she could write it in the diary and give it to him and he could respond to her in writing. They did that for a little bit.
With our youngest one, she just thought, “OK, Daddy has cancer.” He took her to the library and she’s very extroverted, so she met this little girl and her mom, and she said, “Oh, we just moved here and my mom works in Louisville and my dad just found out he has cancer.” She was young enough where she could talk about it without realizing the impact. You have to allow for that, too. And I’m grateful that my kids have very different personalities, so it allowed us to tailor it to each of them.
Nathan Ferguson: As I discussed earlier, this was all based off information from my first local oncologist, so it was, “You’re going to get a port and get chemotherapy in three months.” And we just moved there, so I was expecting to be sick a few times a month, and that was what drove that reaction. If I had to give personal advice for people going through this, it would be to see your specialist and get an idea of what treatment is going to look like and when, if you have a few months of lapse, so that you do not have to go through that very quickly like we did. Because we thought we were in a rush when we weren’t at all, and then this comes up quite frequently in forums and with people. They would ask for advice about how to tell your kid, and I always say, “You know your child, I don’t. You should know what your child can handle.” For me personally, use advice off the internet for that. You might say, “My kid is very outgoing and this is how we told her,” but I would leave that choice up to that parent.
Harry P. Erba, M.D., Ph.D.: Ian?
Ian W. Flinn, M.D., Ph.D.: That’s great advice. I don’t know that you can have one way of having this conversation. Every family, every dynamic is different. You also have a very young family. Most patients with CLL are older and their children are either teenagers or adults, and so it’s a very different conversation.
Harry P. Erba, M.D., Ph.D.: Doreen?
Doreen Zetterlund: I think you have to be careful about what you share professionally, depending on what age you are. Once it’s out, it’s out, so you might want to just share that with your closest immediate friends and your supervisor if need be, based on your treatment and the medical follow-up appointments that you have. I think it’s good personally for your soul to share it with people, but you also have to be aware that there are ramifications professionally and socially as well. Share on an as-needed basis.