Monitoring Indolent Lymphomas
and Response to Treatment
How Indolent Lymphomas
are Monitored |
Initial Assessment, workups and Surveillance |
The timing of
tests can depend on
the type of lymphoma, the clinical behavior, the results of laboratory tests,
Monitoring of indolent lymphomas:
Follow-up of Follicular (indolent) Lymphoma for complete or partial
response taken from NCCN guidelines:
"Clinical follow-up every 3 months for 1 year, then every 3 to 6 months.
Follow-up includes repeat diagnostic tests, including imaging (based on site
of disease and clinical presentation) as clinically indicated."
See NCCN guidelines 2009
Comment: We suppose that the follow-up for partial and
complete response (PR / CR) are grouped together in the NCCN
guidance because relapse is anticipated for the indolent lymphomas.
Also the guidance is sufficiently flexible to apply to unique patient circumstance and preferences. Another key phrase in the guidance being "based on site of disease and clinical presentation" as some areas of presentation
may require more careful attention.
We'd like to see this topic covered by experts giving case-based examples.
In particular, a good many patients remain concerned about receiving
CT imaging on a regular basis over 10 to 20 years. We think guidance
on monitoring the indolent lymphomas might set limits on such exposures, particularly for
patients under 50 years of age, and provide alternative ways to
appropriately monitor the disease in order to guide clinical
indolent lymphomas are monitored?
| Patient-reported symptoms |
Diagnostic tests |
When tests may be
Your doctor will:
Palpate (feel) for changes
in lymph nodes;
Ask questions about how you
feel and if you're experiencing new symptoms
(see Patient-reported symptoms below)
Review results of blood tests, imaging
reports and diagnostic results.
Be sure to receive copies
of tests so that you can review and possibly help your doctor
to identify or explain trends (directional changes to lab
results over time).
Patient reported symptoms (PRS) are an important part of managing lymphomas, but our
accounts are admittedly subjective - can be
magnified or downplayed, depending upon our temperaments ... can be related or unrelated to lymphoma ... so this is a problem and a common one at that.
It should be noted, however, that it's rare when progressing lymphoma is a medical emergency. A lesion or lymph node increasing here or there is expected and treatment can be effective against advanced or minimal lymphoma. Your doctor
may want to avoid over-testing and over-treating an indolent lymphoma.
Your honest and timely
symptoms can be as important as any test.
Be sure to record and describe pain, fatigue, bowel and kidney function, fevers,
sweats ... any change that is unexplained and persistent.
NOTE: Sometimes our performance
changes gradually and is difficult to notice. Therefore, a
regular exercise program can be a good
way to both improve your general health and monitor for changes,
which will be more apparent when you have a regular exercise or
activity program. As always, get approval from your doctor before starting an exercise
program that might exceed your ability.
Two suggestions for consults:
* Have a friend or loved one participate - an observer will improve the quality of the consult.
* Provide your symptoms in writing, concisely. Be as factual as possible.
Mar - twice, had to change clothing and sheets
Apr - three times, significant
Mar - low energy, difficult to do everyday tasks
Apr - increasing difficulty concentrating, getting out of bed.
Apr - cannot walk up stairs without stopping, as I could in Mar
(without the baseline note - how you could climb the stairs
in March - the doctor will not know how to interpret your observations)
Fatigue can be caused by lymphoma or treatment-induced anemia, but also by stress, depression, anxiety or even our expectations. If you fear the condition is progressing, you might
experience symptoms or be more alert to them, which can start a
Symptoms and our
to help report symptoms to your doctor.
You might ask your primary care doctor to help you interpret
symptoms as well.
Laboratory tests (labs) ... blood, urine, other
tests such as CBC, LDH, Beta2 microglobulin, Liver panel ...
may be ordered
to monitor for indications of response,
progression, or treatment toxicity ...
tests are performed on tissue sample from of a lymph
node, the bone marrow, or other lesions in order to make an
initial diagnosis or to evaluate the nature of a relapse (to
confirm it is a lymphoma and if the lymphoma has changed).
Generally, diagnostic tests are not used to monitor a previously diagnosed lymphoma unless the clinical behavior changes
or if there is a need to examine why bone marrow function is not
tests such as Sonograms, CT scans, MRI, PET scans are used for
such as initial
staging of the lymphoma,
monitoring for progression during periods of observation, to
evaluate response to treatment, or to examine an area that is
Scheduling of CT scans for surveillance:
Check with your doctor, but there appears to be no standard
schedule for imaging follicular lymphoma ... so there are
lots of opinions and rationales for opinions.
I think the trend is to scan less often for
surveillance ... particularly when the last scan
indicated a complete response (CR) ... so long as there are
no symptoms or lab results that are suspicious for relapse.
If that occurs then your doctor can of course order a CT.
Keep in mind that treatment of indolent lymphoma is often
deferred at relapse - it's just observed until there's a
need to treat (you have symptoms or marked progression), so
there is no established advantage to know early (of a
relapse) by imaging often.
~ Karl Schwartz (lay comment)
When tests may
The schedule of
on the type of lymphoma, the patient and physician preferences, and the
clinical circumstances. The intervals for some tests may range from a few months to years.
CT imaging, sometimes
marrow biopsy, Lab tests
Follow-up (during watch and
CT imaging or
to monitor for progression (if observation -
waiting) or for progression following treatment that the led
to a partial response. The schedule depends on clinical behavior, patient and physician
preferences, patient-reported symptoms.
Patient reported symptoms or
suspicious lab results:
... may warrant further diagnostic tests,
Depends on the nature of the changes and the significance.
Prior to Treatment:
to provide baseline imaging information, or to judge
for certain types of treatment,
such as a bone marrow biopsy prior to
Clinical trials may require additional pre-treatment
assessment to judge results.
to assess response to therapy.
Maintenance Rituxan: It may be that more frequent
imaging is required while receiving maintenance Rituxan
(mid-treatment to assess response to therapy), to make sure
that you are still responding to the treatment - or that it
is still preventing a relapse - before giving more of the
Clinical trials may require additional assessment to
safeguard participants -- to monitor for adverse events.
End of Treatment:
CT imaging and
to determine response to treatment, particularly
when the goal of treatment is a durable complete response
PET is sometimes used in this setting to determine if residual masses are active
or scar tissue.
While in Remission
regularly scheduled intervals (but there is no standard
or based on patient-reported symptoms, or
lab results that suggest a possible relapse.
Restaging at relapse:
Can be very similar if not identical to initial diagnosis
CT imaging, sometimes
marrow biopsy, Lab tests