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My Body Aches: Is It My CLL?

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Published on June 1, 2016

Are body and joint aches a symptom of CLL?  In this “Ask the Expert” segment, Dr. Philip Thompson of MD Anderson Cancer Center answers this viewer question.  Listen as Dr. Thompson explains the metabolic pathway that causes many of the symptoms associated with CLL.  Dr. Thompson is careful to point out that joint pain is not necessarily a CLL symptom and should be thoroughly evaluated by your doctor. 

Sponsored by the Patient Empowerment Network, which received educational grants from AbbVie Inc. and Genentech Inc.

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Transcript | My Body Aches: Is It My 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. 

Andrew Schorr:

I was diagnosed with CLL in October of 2013. I’m still on watch and wait. I have swollen lymph nodes in neck and underarms. Recently, I feel like my whole body aches, especially my joints. Is this a symptom of CLL? 

Dr. Thompson:  

Many of our patients, actually, who are in this watch-and-wait category have quite significant symptoms, which impair their quality of life. By far, the most common of these symptoms is fatigue. The problem with fatigue is that, many times, it’s a vague symptom, and it has many potential causes and, oftentimes, people are told, “Well, no, it’s not your disease.”

In actually fact, work done by one of researcher’s here, Dr. Zeev Estrov, has shown that there are pathways within the CLL cells that are active when they really shouldn’t be, and they lead the production of these chemicals called cytokines. These cytokines are the same things that make us feel sick when we have an infection, like the flu.

Many of our CLL patients have quite high levels of these cytokines despite having, what we would call, early stage CLL that doesn’t meet the criteria to need to have treatment, and these symptoms really do affect people’s quality of life. We’ve been looking at ways of trying to treat these symptoms. We actually have a medication called ruxolitinib or Jakafi, which is approved in another disease, and we’re using this medication in this patient population to try and treat the symptoms that are associated with the CLL, particularly fatigue.

It doesn’t necessarily directly treat the CLL, but we’ve seen some quite significant improvements in patients’ quality of life on this study. Now, that all having been said, the joint pains that you’re describing are probably not the most common symptom that we see associated with CLL. We do see other issues in patients with CLL. For example, some patients with CLL might have a high risk of infection, and, also, occasionally, we see autoimmune-type diseases. This usually affects the blood rather than joints, but there are an array of things that could be causing this symptom. I would strongly encourage you to see a doctor, get thoroughly evaluated, make sure that it’s nothing else that is causing the joint pains.

But if there’s nothing else like an infection or an autoimmune disease, it’s quite possible that you might benefit from either some treatment for your CLL or some symptom-directed treatment, like the clinical trial that I mentioned.

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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