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Strategies to Help Alleviate the Emotional Burden of CLL

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Published on January 22, 2019

At a recent town meeting in Atlanta, Patient Power host and advocate Jeff Folloder was joined by a panel of chronic lymphocytic leukemia (CLL) experts, including Dr. Jonathon Cohen and Dr. Jean Koff, from the Emory University School of Medicine, and Mona Shums, from the Winship Cancer Institute, to provide CLL patients with tools to help cope with anxiety and emotional distress. The panel discusses the emotional challenges CLL patients face throughout their journey, who on your health care team to talk to about symptoms of anxiety or depression and shares resources for support. Watch now to find out more. 

This town meeting was produced in partnership with Winship Cancer Institute of Emory University and sponsored by AbbVie, Inc., Pharmacyclics, LLC and TG Therapeutics.



Winship Cancer Institute

Transcript | Strategies to Help Alleviate the Emotional Burden of CLL

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.

Jeff Folloder:

Can you offer our audience, both here an online, any recommendations for getting help with some of the emotional aspects of a diagnosis?

Mona Shums:              

Sure. There are so many resources out there, like you said, Facebook, local communities, we encourage people to meet other people with similar diagnoses, or have been through it or going through it, or have had a family member go through it. We understand that this is not just treating the physical part of the disease, but there is also the emotional part, the psychological toll that it takes not only on the patient but even the family members. I think as clinicians, we actually rely really heavily on caregivers because when we can’t see the patient we rely on you guys to let us know the patient may underreport what’s going on because they don’t want to go through the additional tests.

They don’t want to be hospitalized but caregivers also provide us a second pair of eyes to say no there is something different. And so, there are so many support systems out there, there are so many options. Online, within your community, even within the hospital or the cancer institute that you go to, we encourage people to reach out to your physician or your nurse practitioner or PA because they may be able to tell you what local support systems there are even within the hospital itself.

Dr. Koff:                     

If I could add to that, I think medicine is moving more in the direction of comprehensive care of the patient that extends beyond the physician or beyond even the treating physician. And so, in my own practice I think I’m recognizing more and more that good patient outcomes, whether it’s eradicating your disease, keeping your disease under control, or maintaining a good quality of life doesn’t begin and end with treatment of your disease, or management of your disease. Because this is such a stressful, and sometimes even traumatic event in people’s lives to have the stress of the diagnosis, or anxiety about treatment, I may not be the best person to treat them because my focus is going to be on managing your cancer.

And for me, that means that I need to be able to recognize and talk with my patients about when they are feeling overwhelmed, or when they’re feeling anxious, or depressed, or lost with their diagnosis or their treatment. And being able to have a conversation with them about what other resources are that I can offer them, which for me, a lot of times means reaching out to one of my colleagues in supportive oncology. And these are nurse practitioners, PAs, MDs, who specialize not in treating your CLL but in treating anything that may be making you feel uncomfortable, or in pain, or anxious, or overwhelmed, or depressed, and taking care of your symptoms and how you’re feeling.

And so, for any of my patients I have a very low threshold to utilize that aspect of care because I want my patients to have a good quality of life regardless. And often, that means not just treating their cancer but treating their emotional symptoms and having someone who’s really dedicated to that. So, I lean on supportive oncology a lot.

Jeff Folloder:               

Just to reinforce what you’ve said. Stress and depression are exhausting, and they absolutely can make your symptom load even worse. So, it’s really, really important that you communicate clearly to your team what’s going on. If you’re all stressed out they need to know it, if you’re depressed they need to know it. And most importantly, guys, I’m speaking directly to you here, bring your care partners with you; because when you’re asked the question how’s it going? And you say fine. And your care partner is doing this, we need to get to the root of the matter. I’m not saying it’s just guys that sandbag the doctors but it’s usually guys that sandbag the doctors.

Dr. Cohen:                  

I was just going to add that I think, I agree with everything that Jean said and Mona. I think that, at least in my own experience I find that depression and anxiety are probably a bigger challenge in patients with CLL than maybe some of the other patients that we see. And I think that’s because it’s a little bit of a different disease, right? So, if somebody gets diagnosed with breast cancer, for example, and is gonna go through surgery, or maybe gonna go through a course of chemotherapy, often their supporters and their community will rally around them, they’ll help them get through the surgery, they’ll help them, maybe, get through their chemotherapy, and it’s a little bit more of a defined time period.

But for a patient with CLL you may not even be treated for three to four years. There are a lot of things that come into that, so the first is some well-meaning relatives or friends may hear you have cancer but you’re not going to be treated. That certainly isn’t going to lower your stress by hearing that from well-meaning loved ones. And also, the next thing they say is good this person doesn’t necessarily need treatment so they must be feeling fine, they must be doing well. And we all know that on a daily basis that you’re still living with the disease, you’re thinking about symptoms, worrying about fatigue, and so I think that that’s something that for a lot of my patients that are on observation, even though they’re “disease” may be fine and may not be progressing, they still are struggling with symptoms of the disease including stress and anxiety and depression.

 It’s really important to recognize that and to bring that to our attention, and I can assure you that you are not the only one. I’m sure if you took a poll in this room many of you have experienced over the course of time that you’ve had the disease those types of symptoms, and so it’s really important to bring that up because there are resources to help 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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