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Dealing With Cancer Fatigue With Michele Nadeem-Baker: CLL Patient Advocate

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Published on April 25, 2019

What causes severe fatigue in cancer patients? How can you deal with unrelenting exhaustion despite how much sleep you may get? Tune in to hear patient reporter Michele Nadeem-Baker describe triggers for fatigue as a disease symptom and treatment side effect, and provide strategies to help mitigate suffering.


Transcript | Dealing With Cancer Fatigue With Michele Nadeem-Baker: CLL Patient Advocate

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.

Michele Nadeem-Baker:

Hi.  This is Michele Nadeem-Baker.  I am your patient reporter for Patient Power, and today we're going to be talking about fatigue.  I would love to hear from you if you're watching right now and to learn if you have fatigue and if so, what have you done to help make you less tired, if you've been able to do any of that. 

I just want to share with you my story regarding fatigue.  Fatigue is my worst side effect on my treatment.  And also before I started treatment I had a lot of fatigue from my CLL.  I have chronic lymphocytic leukemia, or for those of you watching, fatigue hits many of us both from our cancers or from our treatments.  There's cancer-related fatigue, and there is also treatment-related fatigue. 

And fatigue as defined in a regular like Merriam-Webster dictionary is basically called something that makes you—you are extremely tired.  You are weary.  You have unrelenting exhaustion that no matter how much rest you get it is not helping it.  That makes me fatigued even just thinking about that. 

But the medical definition of fatigue is just a little more specific to those of us who are dealing with it right now, who are watching Patient Power.  And the medical dictionary says that fatigue can be triggered by stress, which a lot of people undergo on any--whether they have a diagnosis like we do or not, by medication, by treatment, by overwork, which many people are these days, or by illness or disease.  So that leaves us all in this boat of fatigue if you are suffering from it, and again it can be cancer-related fatigue or it can be treatment-related fatigue. 

Or there's also depression.  Depression can also bring on fatigue, and a lot of cancer patients are so upset by their diagnosis that they get extremely depressed.  Those of us with CLL, one of the benefits of watch and wait is that we have time to deal with our diagnosis for those who are diagnosed well before treatment and to basically make terms with it before we start treatment.  That doesn't mean you won't be upset about it or down in the dumps about it, but at least you have some time before being told, you have this today, you start treatment tomorrow, in most circumstances.  Something that a brings on more depression, but generally speaking it means we have a little more time to get used to it. 

So what does one do for fatigue?  I was at Dana-Farber yesterday, that is the cancer institute that I go to, and the doctor that I met with told me that as far as she knew, as of today there are no clinical studies, there have never been any clinical trials on fatigue and how to mitigate it for patients.  I've been told by another doctor that there is no diagnostic code for fatigue.  Think of how that made me feel.  I'm wondering about all of you out there, how do you feel by being told there's no diagnostic code for this, so really—I guess you really don't have it.  It's all made up in your head.  It really makes us as patients not feel very good about this when we know what we are suffering from. 

And we know no matter what we do, no matter how much sleep we get, no matter how much anything that we do that we're suggested to do that we are just still absolutely exhausted.  For myself, I've been trying to figure out how to explain this so that my oncologist, my primary oncologist will understand as I have had this for years. 

Finally, I explained it as saying it's every day in the afternoon I always feel almost as if I'm getting the flu.  Every afternoon I just have—I'm washed over by exhaustion.  I just feel horrible all over.  I have to lay down and sleep for a short while or rest, or otherwise I am really, truly good for nothing.  Once I get that rest it helps, but my body just—I am the Eveready bunny going, going, going, and then all of a sudden I just stop, and that is it. 

So for fatigue for all of us something should be done and has to be done.  I went to a fatigue program, an antifatigue program just for cancer patients to see what they suggested to see if it would help.  For some people it really does help.  For those who are not active—now, I've always exercised.  Those of you who have watched know that I even—I went to the gym during treatment.  I'm a huge proponent of working out because it's so good for you on so many levels including the mind, the body, the whole connection being more in control.  That's how I felt, anyway, by working out. 

I continue to work out.  For me it wasn't--it did not help with my fatigue.  Or maybe it does.  Maybe I would be fatigued from the second I wake up if I did not exercise.  And I know a lot of oncologists are proponents of exercise, but please always check with your doctor first to make sure that you can do whatever type of exercise you're looking at. 

As we all know, there are many types.  There's weightlifting, which I do, and cardio.  There are things which are more gentle such as yoga, and if you even need it, chair yoga, even more gentle.  Meditation.  I even saw a gym recently for axe throwing.  That's just inaudible on me.  Personally, I know I would not be very safe at that, but exercise of some sort is very, very good for your body and your mind and your spirit. 

Meditation is also good.  It calms you.  It gives you more restful sleep.  And I also know that some people are fatigued because they don't sleep well.  Personally, I'm blessed, I do not have that problem.  But some people are having restless sleep due to their treatments, and in that case you should talk to your doctor about that as well.  There's something that they can suggest to help you sleep better so that you can have more rest and a better day the next day, have a clearer mind. 

Fatigue can also help you feel less focused.  It's much harder for you to focus on a task, harder for you to concentrate at work or on other a tasks at hand.  This is something else the reason that you need sleep and why if you're fatigued it's really important to tell your doctor.  A lot of us out here don't know what we should tell our doctor, what's important.  We just assume they must know.  I'm on treatment, I'm tired.  Of course I'm tired.  Anyone's going to be tired. 

I know I was just thinking I'm alive.  I should be thankful I'm alive.  Why should I tell my oncologist I have any of these side effects?  They'll think I'm ungrateful.  Well, I'm very grateful, and in the beginning of treatment I just thought everything was supposed to be this way.  And finally I realized that unless you share this information your doctors aren't going to know how you're feeling.  They'll think that everything's fine.  You know, how are you today?  We're all so programmed to say, I'm great.  How are you? 

Take a step back.  Take a few deep breaths and think really how do I feel the next time I am asked by a medical professional.  Am I tired?  Am I feeling some other things?  Am I not—why am I tired?  Am I not sleeping well? 

One of the other things I've learned that my team had suggested I do was start keeping what's called a fatigue journal.  You just keep track of—you can do it on your phone under notes.  There are more formal journals online that you can find.  But you track.  Okay, am I tired the second I wake up and then my energy comes to me?  If so, what time does that energy come to you?  When are you most productive during the day until you get really tired?  Am I sleeping through the night?  How many hours am I sleeping during the night? 

I know this sounds really basic, but these things, once you put them in writing, you can help look at your own pattern and your doctor can.  And perhaps they can help as I said, either prescribe something or give you a strategy to help you regain your energy.  And that's what we all want, to get back to a normal life or somewhat normal life, be more productive, more social. 

Socialization is another thing that helps with fatigue.  If you're socialized and you're meeting with other people, they help you.  They help you be more energetic if they're energetic people.  I'm not saying to go sit with a bunch of people who are falling asleep.  That's not going to help.  But sometimes with other people, mentally stimulated.  Crossword puzzles, journaling, all of these things are supposed to help with fatigue.  And don't forget the exercise. 

So I hope when you review this if you are before treatment you could have cancer-related fatigue.  If you're in treatment you could have treatment-related fatigue.  And if you're depressed very anxious, that can also cause fatigue.  For all of these reasons or anemia I want you to tell your doctor that you're feeling fatigued and ask if they have any suggestions for you.  Different hospitals treat this differently. 

At MD Anderson, they have a fatigue clinic.  It helps patients like us.  It helps them determine the best strategies to not have fatigue.  I haven't heard of any other clinics like that.  They may be out there, just because I haven't heard of them, but they do have one.  Ask your doctor if they have something similar at your hospital. 

And if you are feeling fatigued, please write in.  I would love to hear what you're doing, how long you've been feeling it, and also let me know when you tell your doctor and if they'd had any new strategies for you.  I hope this helps all of you.  I believe that fatigue is a very important thing.  There should be a diagnostic code because what we feel is real as patients, and we really have to be supportive out there for other patients because without knowledge, which is the best medicine according to Patient Power, and it's true, we wouldn't know how to navigate the system. 

So this is Michelle Nadeem-Baker on fatigue for Patient Power.  Thank you for watching, and I hope to hear from 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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