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
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"
Fatigue can be caused by any,
or some combination, of the
following:
.gif) |
Lymphoma-related causes:
|
|
Lymphoma in the marrow can
contribute to anemia leading to fatigue |
|
|
|
Therapy-related causes:
|
|
The effect of chemotherapy
and radiation on red blood cell counts. |
|
|
The effect of therapy
on mood, sleep |
|
|
|
Other medications |
|
|
Injury from surgery or other |
|
|
Anxiety, high stress, even clinical
depression
|
|
Sleep deprivation
|
|
|
Inactivity |
|
|
|
Pain from lymphoma,
treatment, or unrelated pain |
|
|
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!
Tips for reporting and managing fatigue:
|
|
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.
|
|
|
With your doctor's help, try to identify the
underlying cause.
|
|
|
If you are depressed, discuss this with your
doctor.
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
needed.
|
|
|
Identify what's most important to do, and use
your energy for these tasks.
|
|
|
Try to include shorter versions of activities
you enjoy.
|
|
|
Exercise!
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.
|
A Patient's Perspective on Fatigue
By Belcanto, Senior Member, Webmagic Support Forum
"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.
Resources of Fatigue:
|
|
Clinical Trials to treat cancer-related fatigue
ClinicalTrials.gov
|
|
|
Fatigue and Quality of Life: Lessons from the Real World
The
Oncologist |
|
|
Cancer Care for the Whole Patient:
Meeting Psychosocial Health Needs (2008)
Fatigue topic |
|
|
Low blood counts
PAL
|
|
|
Anxiety and Depression
Resources
PAL
|
|
|
Cancer Treatment
Support
PAL
|
|
|
PAL
fatigue survey
(under construction - seeking input) |
