Recommendations for patients and loved ones impacted by a diagnosis of chronic lymphocytic leukemia on locating helpful resources and establishing a strong network of support.
PUBLISHED March 25, 2019
Nicole Lamanna, M.D.: It’s important for patients with CLL [chronic lymphocytic leukemia], when they’re initiating treatment; and there’s no doubt it’s important for patients who are being managed with a watch and wait approach as well. Those visits tend to be shorter because patients are just having physical exams and bloodwork. And if they’re already in the routine of knowing what it is to be in watch and wait, unless other issues come up, you should be asking your physicians any questions you may have. But it’s a little bit of a quieter time period.
When somebody initiates therapy—of course that’s a very different ballgame. Whether they’re on traditional therapies that are not part of a clinical trial, or whether they’re part of a clinical trial, there’s a lot more involvement of what’s going on and a lot more involvement from the team. I hope Danise is going to say she had this experience, but hopefully it’s really a multidisciplinary approach. In other words, you have your physician. You have the team. You have the research nurse and the other nurses. There might be fellows, [physician] assistants, depending upon the team and what’s involved in your care. And each physician’s office might do it slightly differently.
But the goal is to provide patients with more than one avenue to get their questions answered, be taken care of, and, whether on a clinical trial or not, to make it as seamless as possible knowing that it could be a very scary and daunting time for the patient. It could be family and friends, and we’re going to talk about that as well. Danise, can you tell me about your own personal support?
Danise Hoover: The team that was taking care of me was incredibly good. They were open and kind and present in so many ways. It was a fine experience. You couldn’t ask for a better medical team. Be proud, because they’re a wonderful group of people. There was never a question that went unanswered, and if I didn’t understand it they explained it again. I was in the bone marrow transplant unit and the care was absolutely phenomenal. It was so complete and so meticulous. It was textbook. You couldn’t ask for anything better than that.
And in terms of my family, they were there. I have a husband. I have three supportive kids. I have lots of friends. I also saw a therapist, which I think is really important in situations like this. It's somebody to just help keep you grounded. It was very useful. I think that without the support, and without somebody there behind you, it could be more difficult. But I was fortunate.
Nicole Lamanna, M.D.: A couple of things that are important are what Danise was talking about. One level of support has to do with the care provider team — your physician and team. The next level of support is your personal support. We realize that maybe not everybody has the same level of support Danise has with her family and friends. If you don’t have a close family network, we always encourage you to bring friends or family to those visits. They may hear things differently than you hear things, which is normal because there may be levels of anxiety, or the information can be difficult and you need to hear it more than once.
So having friends or family come to your physician appointments. That can be helpful even when you’re in watch and wait, but certainly when you’re first diagnosed and everything’s new. And certainly when you’re on treatment, because you might miss something, it’s always a good idea to have a good connection with your physician and the team. If you think of a question after your appointment, call back and say, “I didn’t understand that,” or, “Can somebody call me back?” Those kinds of things are very important. You want to have a good relationship with your team, first and foremost. It sounds like Danise did. She was in our bone marrow transplant leukemia unit, which is used to taking care of leukemia patients. So she had good inpatient care as well.
But there are other levels of support patients need to know about. If you’re new to this, for your disease, there is the Leukemia & Lymphoma Society. There are websites. The internet is good, but it can also be dangerous. So I caution people on both ends. You can Google things, which is great, but if you don’t understand what you’re Googling … and remember that I said CLL is a very heterogeneous disease, right? There are many different subtypes. What may apply to one person may not apply to you. Write those questions down so you can bring them to your providers and say, “Does this mean me? Do I fit this? What does this mean?”
There are websites that talk about clinical trials nationally and internationally. So certainly, as a patient advocate, both speaking for myself and Danise, as I’m sure she was somebody who read and participated in a clinical trial, there are other ways to get support. If you don’t have family and friends, there are obviously leukemia and lymphoma websites. There are CLL societies, or CLL patient advocacy groups that you can get in touch with. If you need to talk to another CLL patient or learn about CLL, this is all online. If you’re nervous about doing this in person and really just want to read about it, there are different ways through technology, and there are support groups and folks who are willing to reach out to patients on the phone.
So there are other ways for you to get support if you do not feel like you have the support you need. I think that would be one important take-home point: That CLL patients have a lot of avenues to get new advances in the treatment of their disease, but also to get an extra level of support or education that they may feel that they’re missing from either their home or social network, or their providers.