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Side Effects or SymptomsFatigue

Last update: 03/06/2017

TOPICS

Fatigue and Tips to Manage
and Report | Resources | Research News
 
New: A Patient's Perspective on Cancer/Treatment Fatigue

TOPIC SEARCH: Scholar | ClinicalTrials.gov

"Post-cancer fatigue can be complex. You can't point to one single factor and say "this is the cause."


Fatigue may be one of the least understood symptoms of lymphoma and other cancers.

It is the experience of low energy levels - of feeling tired. It is common to patients with lymphoma as a symptom of the disease, but also a common side effect of treatments.  

"It is different from the fatigue experienced by healthy individuals in that it persists even after rest and sleep." 5 (Carr et al., 2002). 

Fatigue may be one of the most overlooked and under-treated side effects of cancer, according to the Fatigue Coalition:

To many doctors, fatigue "just doesn't register on the radar screen as an acute or urgent problem," but for the person with cancer, it's often the dominating problem," says Dr. Jerome Groopman

- "Most Cancer-Related Fatigue Can Be Treated" 

Cancer and treatment-related fatigue can improve with time and with effective treatment of the lymphoma. Try to stay active as exercise can help according to more than one study ... within your limits of course. Talk to your doctor about it. Describe the fatigue in terms of what you could once do and have trouble doing today. American ginseng might be considered as it was recently studied and shown to be effective in a reputable study.  The duration of the benefit from ginseng seems an open question - so identifying and addressing the underlying cause is key.

Noteworthy and in the News:

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Fatigue: An Overview - American Family Physician http://bit.ly/2muH6nH
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Cancer-related fatigue: Mechanisms, risk factors, and treatments http://1.usa.gov/1Yhd8PG
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Onc Times: Fatigue: The Forgotten Symptom? http://bit.ly/X4U4SN   

Fatigue can be caused by any,
or some combination, of the following:

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Lymphoma-related causes:
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Lymphoma in the marrow can contribute to anemia leading to fatigue

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Therapy-related causes: 
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The effect of chemotherapy and radiation on red blood cell counts.

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The effect of therapy on mood, sleep

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Other medications

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Injury from surgery or other medical procedure

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Anxiety, high stress, even clinical depression
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Sleep deprivation

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Inactivity

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Pain from lymphoma, treatment, or unrelated pain

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Poor nutrition

Common symptoms of fatigue:

Feeling of weariness, difficulty with thinking or making decisions, difficulty walking short distances or climbing stairs, and trouble performing simple every-day tasks.

Some causes of fatigue can be addressed by life style changes or medical interventions, such as regular exercise.

Please discuss and describe fatigue symptoms with your doctor.  Don't keep it a secret!

Here's a fatigue severity scale to help with reporting:

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Fatigue Severity Scale (FSS) PDF  by saintalphonsus.org (fixed)


Tips for reporting and managing fatigue:

bullet Report changes in your energy level to your doctor or nurse.

Use objective measures to communicate changes, such as:

Doctor, I can no longer walk up two flights of stairs - one month ago I could do so without a problem.
 
bullet With your doctor's help, try to identify the underlying cause.
 
bullet If you are depressed, discuss this with your doctor.

Medications can treat depression.
 
bullet Allow friends or neighbors to help with some tasks you normally do.
 
bullet Make time for rest, and take short naps when needed.
 
bullet Identify what's most important to do, and use your energy for these tasks.
 
bullet Try to include shorter versions of activities you enjoy. 
 
bullet Exercise! 

If you are able, take short walks or light physical activities to help combat fatigue.
 
bullet Try activities such as prayer, meditation, yoga, guided imagery, visualization, etc.
 
bullet Try eating smaller portions of food and avoid foods that may make you sluggish.
 
bullet Remain socially connected. Share your feelings with others. Consider joining a support group.
 
bullet Limit your use of caffeine, alcohol and foods that are high in sugar or difficult to digest.
 
bullet Maintain a diary of how you feel each day - including your sleep patterns.

Patient Perspectives on Fatigue - sharing their homework:

"It always makes me both sad and frustrated whenever I hear about someone whose doctor has dismissed post-cancer fatigue, chemo brain, sleep disturbances and so on as if it's something they couldn't possibly believe. When I went through treatment 16 years ago, none of this stuff was ever addressed, and the research on it was minimal to nonexistent. This has really started to change but it hasn't necessarily trickled down to the level of actual doctor-patient interaction.

A lot of the most recent research totally backs up what you've been experiencing. The fatigue can be long-lasting and it does not magically disappear as soon as you finish treatment, or when you reach the one-year mark or any other milestone on the Great Timetable in the Sky. Another important point is that post-cancer fatigue does not seem to be the same thing as ordinary fatigue; it's often much deeper, more complex and can't generally be resolved with the usual solutions. All these years later, I find that if I overdo it, the fatigue can hit me like water draining out of a bathtub - all of sudden my energy and motivation are just gone.

A few suggestions based on what I've gleaned from the research: Exercise really does matter. It doesn't have to be strenuous, but it can help to stay active and do something you can tolerate each day.

Be sure you're getting enough sleep. Cancer seems to disturb the sleep cycle; it's not known whether this is due to the disease itself or to the treatment. Even when you go to bed on time and try to follow a regular sleep schedule, you may not be getting the deep sleep you need to feel fully rested and over time it can really take a toll. Sometimes this just has to be dealt with aggressively through medication.

The whole chemo brain thing can be very difficult to manage. I work in a very cognitive occupation with a lot of information processing and deadlines, plus the work environment unfortunately is just very chaotic. At the end of the day (heck, sometimes before lunch, even) I often feel mentally drained, and this tends to transfer to how I feel physically as well. I try to deal with it by being super-organized with my daily priorities and not taking on so much each day that I become mentally overwhelmed. It takes time, though, to come up with a strategy that works for you and won't be submarined by workplace demands. You might start by analyzing where you struggle the most and then try to come up with two or three creative ways to make it better. If you do a search on this forum for "chemo brain," it might give you some ideas to start with.

Nutrition. This is a big deal too. I do love my coffee but I don't drink soda and I try really, really hard to eat well - a good breakfast, adequate protein, whole grains, vegetables, etc.

Down time. I have to have some down time every single day. I try to take 10 minutes in the morning, while I'm getting ready for work, to just sit down and let my mind relax. Ditto in the evenings. It seems like a little thing, but often it can help me get my second wind, so to speak.

Medically, you might be dealing with borderline anemia. Your thyroid might be functioning less optimally (this is pretty common with radiation to the neck but also can be a result of chemotherapy). There are probably various other possibilities - none of them huge, perhaps, but when you put it all together, it adds up to persistent, troubling fatigue that can seriously mess up your quality of life.

I don't know if any of this has been helpful. Mostly I'm just rambling here. My experience, quite frankly, was that I was more or less on my own in this regard and simply had to figure it out for myself.

The main point, I guess, is that it does take time to recover - more time than we or the other people around us might realize. But there are some practical things you can do to help lessen the burden and make you feel a little more in control.

....

We need to view this as a bell curve. There is a subset of patients who recover from the fatigue quite rapidly and with minimal problems. The majority of people fall somewhere in the middle, i.e. experiencing improvement in 6-12 months. But there are always going to be some outliers who, for whatever reason, continue to struggle with fatigue long after treatment is over.

People who don't "get better" within the first year after treatment are not necessarily doing anything wrong. They may just be at the far end of the bell curve. We all respond differently to the physical challenge of cancer and cancer treatment, and what's true for the average patient demographic does not automatically apply to every single individual.

My other point: Post-cancer fatigue can be complex. You can't point to one single factor and say "this is the cause." Often it's a whole lot of things that just add up. So finding ways to feel better may require making numerous small changes in different areas that cumulatively will help make a difference. I'm all in favor of activity but people need to be aware that exercise alone may not be the magic bullet they're seeking; often they'll have to address other things as well.

As someone who is 16 years out from treatment, my perspective is probably different from that of someone for whom treatment is much more recent. One of the lessons I've learned is that you're never truly the same afterwards. This isn't necessarily bad; it's just how it is. It was hard to let go of the notion that some day I would go back to where I was before cancer. I haven't, and I won't, not ever. When I finally let that sink in, I was better able to take charge of the new reality and figure out how to function as well as possible within the boundaries I now have.
 

CLL-specific discussion of possible causes of fatigue:

Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblinís blog on immunodeficiency
http://mutated-unmuated.blogspot.com/2008/05/immunodeficiency-of-cll.html

and his comments on fatigue: http://mutated-unmuated.blogspot.com/2006/08/fatigue-in-cll.html
All 3 times my CLL has progressed Iíve gotten severe fatigue and weakness in my thigh muscles, possibly due to a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically.
In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 (an infant disease called Roseola) was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed my fatigue entirely.

I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs. I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We have tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.

I started Venetoclax in June and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.

Since I recently had a full round of Prednisone and now Venetoclax, Dr Furman currently has me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system

So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.

Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications. Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

From Patient Power Video: https://www.patientpower.info

Joseph writes in this question about fatigue. He says, ďI sometimes have days where Iím extremely tired. Mornings are okay, so Iím able to shower and take care of myself and my home. But by noon, Iím exhausted. I feel I have no quality of life. Just walking across the room, I feel unsteady. Is this fatigue all about my CLL?ď

Dr. Thompson:
This is a really good question. Fatigue is, by far, the most common symptom that patients with CLL have, and the reason for this is that the CLL cells themselves are producing these chemicals called cytokines, and also, they induce the immune system to produce these chemicals called cytokines that are the same chemicals that you make when youíve got an infection, like the flu. The symptoms that you have when you have the flu, the exhaustion, the fatigue, not being able to get out of bed, this is a common complaints that patients with CLL have. This can happen even when the CLL is, what we call, early stage and doesnít need to have specific treatment for the CLL.

It can be a big frustration for patients, and it can result in a significantly impaired quality of life. Now, that having been said, fatigue is a somewhat vague symptom, and it have many potential causes, so I would strongly encourage any patient for whom they have significant amount of fatigue, like you, where itís effecting your quality of life to a significant degree that you should go and see your doctor, be thoroughly evaluated to determine whether there are any other causes for the fatigue.

We see many patients who may have undiagnosed sleep apnea or an undiagnosed endocrine disorder, or any number of other things that can cause fatigue, and treatment of those will make it go away. In many cases, those things are not identified, and it is determined, ultimately, that it was the CLL thatís responsible. Now, in that situation, you have two options. You can take symptomatic treatments.

Some of our patients take stimulant medications to help them with the fatigue, like Ritalin. We also have a clinical study at MD Anderson with a drug called ruxolitinib or Jakafi that is approved in other types of cancers. This drug actually blocks the production of these cytokines quite effectively in many patients, and weíve noticed at least half of our patients have a fairly significant improvement in their fatigue levels on this treatment. The other option is to receive treatment thatís designed to kill the CLL itself, and which of those is most appropriate depends on your individual circumstances. I would strongly encourage patients with significant fatigue to talk to their doctor about it, make sure itís not something else, and then discuss what options might be available to help them with that fatigue, because itís awful going through life feeling exhausted all the time.
 

Resources on Fatigue: 

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Efficacy of Ginseng Supplements on Fatigue and Physical Performance:
a Meta-analysis - Europe PMC Article - Europe PMC http://bit.ly/2med3A4
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Clinical Trials to treat cancer-related fatigue ClinicalTrials.gov
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Fatigue and Quality of Life: Lessons from the Real World The Oncologist
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Cancer Care for the Whole Patient:
Meeting Psychosocial Health Needs (2008) Fatigue topic
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Low blood counts PAL
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Anxiety and Depression Resources PAL
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Cancer Treatment Support PAL 
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Fatigue: An Overview - American Family Physician http://bit.ly/2muH6nH
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PAL fatigue survey (under construction - seeking input)
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Onc Times: Fatigue: The Forgotten Symptom? http://bit.ly/X4U4SN   
 Quick Reference
Many possible causes: 
Lymphoma,
treatment of lymphoma,
low blood counts,
depression,
underlying infection
sleep deprivation
muscle damage

Consult your doctor!

Treat the cause

exercise and/or
psychological interventions can help
 
Return to top

 

Research News on Fatigue:

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Comparison of Treatments for Cancer-Related Fatigue | Lifestyle Behaviors | JAMA Oncology | The JAMA Network http://bit.ly/2lEfCIc 

Question Which of the 4 most commonly recommended treatments for cancer-related-fatigueóexercise, psychological, the combination of exercise and psychological, and pharmaceuticalóis the most effective?

Findings This meta-analysis of 113 unique studies (11 525 unique participants) found that exercise and psychological interventions and the combination of both reduce cancer-related fatigue during and after cancer treatment. Reduction was not due to time, attention, or education. In contrast, pharmaceutical interventions do not improve cancer-related fatigue to the same magnitude.

Meaning Clinicians should prescribe exercise and/or psychological interventions as first-line treatments for cancer-related fatigue.
 
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Physical Exercise May Help Reduce Fatigue During and After Cancer Treatment Medscape

"Exercise appears to have some benefit in the management of fatigue both during and after cancer treatment," the reviewers conclude. "Therefore it should be considered as one component of the management strategy for fatigue that may include a range of other interventions and education. . . . Further work is necessary to determine the most effective parameters of exercise for fatigue management including the types of exercise (aerobic and resistance), mode of exercise, frequency and length of sessions, and intensity of exercise carried out."
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Examination of cancer-related fatigue  news-medical.net

Virtually all cancer patients complain of some degree of persistent fatigue. Coping with this challenging side effect is critical to surviving cancer, especially since many people desire to work, raise children, run a household, or engage in recreation throughout their treatments, said Joseph Roscoe, Ph.D.
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Individualized exercise program for the treatment of severe fatigue in patients after allogeneic hematopoietic stem-cell transplant: a pilot study. Bone Marrow Transplant. 2006 May;37(10):945-54. PMID: 16565742  | Related articles
 
 
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