Monitoring Indolent Lymphomas
and Response to Treatment
How Indolent Lymphomas are Monitored | When Tests May be Scheduled
Also see Initial Assessment, workups and Surveillance | Monitoring DLBCL
 The timing of tests can depend on the type of lymphoma, the clinical behavior, the results of laboratory tests, and patient-reported symptoms.
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 NCCN.org
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 decisions.
How indolent lymphomas are monitored?
Direct examination | Patient-reported symptoms | Laboratory Tests
Diagnostic tests | Imaging | When tests may be scheduled
Direct examination
Your doctor will:
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Palpate (feel) for changes in lymph nodes;
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Ask questions about how you feel and if you're experiencing new symptoms
(see Patient-reported symptoms below)
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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).
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Patient-reported symptoms
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 reporting of 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.
For example:
Night sweats
Mar - twice, had to change clothing and sheets
Apr - three times, significant
Fatigue:
Mar - low energy, difficult to do everyday tasks
Apr - increasing difficulty concentrating, getting out of bed.
Performance:
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 expectation-fulfilling cycle.
See also Symptoms and our Symptoms checklist to help report symptoms to your doctor.
You might ask your primary care doctor to help you interpret symptoms as well.
Laboratory Tests
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Laboratory tests (labs) ... blood, urine, other
Blood tests such as CBC, LDH, Beta2 microglobulin, Liver panel ... may be ordered
to monitor for indications of response, progression, or treatment toxicity ...
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Diagnostic tests
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Diagnostic 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 what's expected.
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Imaging Tests
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Imaging tests
Imaging tests such as Sonograms, CT scans, MRI, PET scans are used for different purposes,
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 causing pain.
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)
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When tests may be scheduled:
The schedule of tests depends 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.
Clinical Circumstances:
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Initial staging:
Diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy, Lab tests
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Follow-up (during watch and wait):
CT imaging or PET? ... or MRI
to monitor for progression (if observation - watchful 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.
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Patient reported symptoms or suspicious lab results:
... may warrant further diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy,
Depends on the nature of the changes and the significance.
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Prior to Treatment:
to provide baseline imaging information, or to judge your eligibility for certain types of treatment,
such as a bone marrow biopsy prior to Radioimmunotherapy
Clinical trials may require additional pre-treatment assessment to judge results.
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Mid-treatment 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 drug.
Clinical trials may require additional assessment to safeguard participants -- to monitor for adverse events.
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End of Treatment:
CT imaging and PET to determine response to treatment, particularly
when the goal of treatment is a durable complete response (versus management).
PET is sometimes used in this setting to determine if residual masses are active or scar tissue.
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While in Remission (surveillance):
Imaging at regularly scheduled intervals (but there is no standard schedule),
or based on patient-reported symptoms, or lab results that suggest a possible relapse.
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Restaging at relapse:
Can be very similar if not identical to initial diagnosis and staging:
Diagnostic tests, CT imaging, sometimes PET, Bone marrow biopsy, Lab tests
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