[ Englisch] A Message to Newly Diagnosed CLL Patients

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There are many issues that patients can face following a CLL diagnosis, including “watchful waiting,” living with symptoms, and finding the best care. Nora Larson, an oncology social worker from Compass Oncology, shares how patients can collaborate with their health care team to help relieve the emotional and psychological burden, and learn more about their disease. Watch as she also explains ways a healthcare team can advocate for patients and help them live their best life after diagnosis.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences, TG Therapeutics, Pharmacyclics LLC and Janssen Biotech, Inc., and Genentech. Produced by Patient Power in collaboration with The US Oncology Network, Compass Oncology, and Willamette Valley Cancer Institute and Research Center.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Nora, you're an oncology social worker. Your job, and you work, I think, with Dr. Kolibaba, is to help us with a variety of things. Okay. First of all, here are people—she went from terror, I went from terror was I was diagnosed. This guy’s always upbeat. So we have a range of reactions. What do you tell people now with CLL? Because again, I think, was it Dr. Spurgeon or somebody said, “People tell you, yeah, the good kind.” So what are you telling people when they're newly diagnosed and their family members, now, and how to think of this? Or just a cancer diagnosis.

Nora Larson:      

Yeah. One of the first things I always like to try to just recognize is that you’ve been thrown into this whole new world. You talk about alphabet soup, all this new stuff that you didn’t necessarily ask to be thrown into in terms of this new medical world with your diagnosis. I always try to start with just letting folks know that we wanna work with you as part of your team and work as a whole person with you. Make sure you know what resources are available to you.

Part of my role as a social worker is to also really talk with you about support, and communicating with your people. Whether that’s family, friends who can be of support to you. And, also let folks know that my, our role as social workers in this field, is to be another layer of support for you. Talk about ways of coping with that watching and waiting, or watch and worry. Talk about what ways of coping are gonna be most helpful for you. Because it’s gonna be different for everyone what that is.

Andrew Schorr:

Now, earlier, I asked Dr. Kolibaba about as a physician dealing with the whole person. Okay.

About, she mentioned the word listening, as far as listening to the goals of the patient. Do you encourage people to speak up? What do they want in their life? Do they wanna take a cruise? Do they wanna retire? Do they wanna run a marathon? What do they wanna do? That’s important, isn’t it?

Nora Larson:      

Absolutely. Yeah. One of the social worker’s roles too, is definitely to be an advocate there with you. I’ve often, meeting with folks before their appointments with the physicians to help them write down the questions and advocate for things that they're really wanting to ask their physicians. What are their goals? What are their hopes during this time of their life? Definitely.

Andrew Schorr:

One of the things that we push is for you to speak up. To get your thoughts in order. You're gonna go for a follow-up visit, whether it’s one year or one month, and you're gonna have questions. Or, your son or daughter or even grandchild depending upon how old you are, may come with you. Speak up.

That typically, us men are pretty bad about it. Because Dr. Spurgeon says, “How are you doing?” “Fine.” Then, my wife asked her if we were gonna say. Say, “Well, no. He's had sleeplessness or this or that. He’s not doing so well.” Or somebody was mentioning with one of the drugs, she said, “Aches and pains.” Is it a complication of the drug? Should she mention it? Nora, you gotta speak up, right?

Nora Larson:      

Absolutely. Yes. We wanna know what you're experiencing from your physical symptoms. Doctors needing to know that, to how you're doing emotionally. All of your well-being is very important to us, and we wanna know. We’re there to try to work with you and help you through that. Hopefully, you have folks like social workers or mental health therapists where you're being treated, who you know you can go to, to be able to talk about those things. that can advocate with you and to your physician with you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on October 4, 2018