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Living with CLL: Monitoring Symptoms During Watch and Wait

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Published on December 3, 2020

What Symptoms Should Patients Look for During CLL Watch and Wait?

Being in a period of watch and wait for chronic lymphocytic leukemia (CLL), also known as watchful waiting, understandably comes with a variety of questions. What types of symptoms should you be looking for? How do you go about monitoring them, and which ones are worth mentioning to your doctor? Finally, what advice do current watch and wait patients have for those who are just starting their watchful waiting journey?

In this Ask the Expert segment, Patient Power co-founder and patient advocate Esther Schorr is joined by patient advocate Jay Blatt and Dr. Nicole Lamanna of the Columbia University Herbert Irving Comprehensive Cancer Center to answer these common questions. Together they will provide helpful first-hand perspectives on the best course of action during watch and wait for CLL, including how to keep track of your symptoms find ways to stay active.

This program is sponsored by AbbVie Inc. This organization has no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.


Transcript | Living with CLL: Monitoring Symptoms During Watch and Wait

Esther Schorr: So, what I know is that you're a watch and wait CLL patient, but you definitely aren't waiting around for anything. You are actively administering a large CLL Facebook group and you're an advocate for living healthfully through all of this. First, can you just tell us a little about how you have been managing your watch and wait time? What are you doing?

What Are Some Strategies for Staying Active During CLL Watch and Wait?

Jay Blatt: I didn't get officially diagnosed until 2016. And when I did get diagnosed, I decided that I was going to try and do whatever I could do as far as adopting a healthy lifestyle to try and lower the impact of my disease. So, I'm a big exercise fanatic. I've seen my fatigue, which was horrible, I couldn't even walk around the block, totally go away. And you know, what works for one person won't necessarily work for everybody, but it will work for a major percentage of the people who try it.

So, exercise. I've become a macrobiotic nutritional counselor. I've been studying for five years. And all of these things – exercise, supplementing, having a positive attitude, just living life and doing whatever we can to support the great efforts of our CLL specialists – it will culminate, and people will get healthier and they'll feel less anxious. And that's what I do.

Esther Schorr: That's great Jay, and appreciate that insight.

What Symptoms Should CLL Patients Look for During Watch and Wait?

Dr. Lamanna: When somebody's newly diagnosed, and we'll get to even folks who have been living with the disease for a long time, there are always questions about, “Is this related to my CLL, this symptom that I'm having, or is it related to something else?”

And I think that there's always a little bit of difficulty with grappling with some of the symptoms that we live with during our lifetime. And it's always important I think, because they may not all be CLL related. And so, I don't think it's wrong for you to bring up some of these issues with your doctor, your hematologist/oncologist. Because then they can help partition out that some of these symptoms might be related to your disease and some of them may not be, right? Or, oftentimes we'll say to folks, "Well, let's try this, this or this and see if that helps with some of your issues."

I hate the term watch and wait or watch and worry. I think active observation is better because we're sort of finding that people have a varied – the disease it's so heterogeneous that people have different tempos to their disease, and they have different symptoms. And as we learn more about the biology, we're trying to figure out what to do about some of these issues.

So fatigue is, I think, a very common question that I get asked about a lot in terms of a symptom. And certainly, that could be related to your disease. It could be related to other things as well. Medications, depending upon if you have other medical problems. Sometimes medications can cause people to have fatigue or other medical problems: cardiac issues, high blood pressure, diabetes. I think these are things that I think it's important to align your hematologist/oncologist with your primary care physician or internist because there may be reasons that could be overlapping that could be not just your CLL but also some other issues too.

So, I think hands down is that, for some of the symptoms that people brought up – fatigue, joint issues – I think sometimes there might be other explanations. And it's just important to try to clarify if other things are playing a role too; arthritis, osteoarthritis, rheumatoid arthritis, there's a lot of autoimmune diseases along with CLL. And so sometimes there might be a relationship for sure, for some of the symptoms that someone's experiencing. But it's really hard to narrow things down without knowing each individual person and what their CLL is doing at the time, where they are with their CLL but also where they are with their other medical problems.

What Methods Do You Recommend for Monitoring CLL Symptoms?

So, I know that's kind of vague but you know, Esther, it's a huge caveat. And some of the symptoms that you folks might be experiencing absolutely could be related but some of them might not be. It's sort of a trial and error. And so, what Jay was talking about earlier, I think it really is important to take, particularly for those who are on active observation, to try to either keep a little notebook or take stock in their symptoms. Does anything change their symptoms if they do something differently? Is it related to medications or the timing of something that they do? So, taking a log of what your symptoms are and sort of trying to figure this out will help the doctor help you sort of partition whether or not these are CLL-based or something else. Does that make sense?

Esther Schorr: No, it does. I mean, it sounds to me like when in doubt if there is something going on for you physically that doesn’t seem to be normal for you, there's no reason not to bring it up with your hematologist and/or your general practitioner, so that they can see if there's a correlation between the two.

Dr. Lamanna: Yeah. Absolutely. I think that's absolutely true.

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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