Effects or Symptoms > Fatigue
Fatigue and Tips to Manage
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Patient's Perspective on Cancer/Treatment Fatigue
"Post-cancer fatigue can be
complex. You can't point to one single factor and say "this is the
may be one of the least understood symptoms of lymphoma and other
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.,
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:
Fatigue can be caused by any,
or some combination, of the
Lymphoma in the marrow can
contribute to anemia leading to fatigue
The effect of chemotherapy
and radiation on red blood cell counts.
The effect of therapy
on mood, sleep
Injury from surgery or other
Anxiety, high stress, even clinical
Pain from lymphoma,
treatment, or unrelated pain
Common symptoms of fatigue:
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
Tips for reporting and managing fatigue:
||Report changes in your energy level to your doctor
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.
||With your doctor's help, try to identify the
||If you are depressed, discuss this with your
Medications can treat depression.
||Allow friends or neighbors to help with some
tasks you normally do.
||Make time for rest, and take short naps when
||Identify what's most important to do, and use
your energy for these tasks.
||Try to include shorter versions of activities
If you are able, take short walks or light
physical activities to help combat fatigue.
||Try activities such as prayer, meditation, yoga, guided imagery, visualization, etc.
||Try eating smaller portions of food and avoid
foods that may make you sluggish.
||Remain socially connected. Share your feelings
with others. Consider joining a support group.
||Limit your use of caffeine, alcohol and foods
that are high in sugar or difficult to digest.
||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
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
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
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
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
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
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
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
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:
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
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
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:
Many possible causes:
treatment of lymphoma,
low blood counts,
Consult your doctor!
Treat the cause
psychological interventions can help
Comparison of Treatments for Cancer-Related Fatigue |
Lifestyle Behaviors | JAMA Oncology | The JAMA Network
Question Which of the 4 most
commonly recommended treatments for
cancer-related-fatigueóexercise, psychological, the combination
of exercise and psychological, and pharmaceuticalóis the most
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
Meaning Clinicians should prescribe exercise and/or
psychological interventions as first-line treatments for
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."
Examination of cancer-related fatigue
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.
Individualized exercise program for the treatment of severe
fatigue in patients after allogeneic hematopoietic stem-cell
transplant: a pilot study. Bone Marrow Transplant. 2006