Thoughts compiled by members of peer-to-peer support
groups on the subject of what to do and consider when you
relapse. This is lay content
... the intent is
to provide a discussion points with your doctor.
Encouragement:
Relapse after the first primary therapy for lymphoma can be
particularly discouraging to patients and to their loved one. Please
be aware that there are often many effective treatment options for
lymphoma following the first relapse.
For
relapse of an aggressive lymphoma, see
Treating relapsed DLBCL - review article
Testing
A biopsy
is often done to see if what has recurred has changed in any significant
way from the original diagnosis. This information can be vital
to making informed treatment decisions. For example, it can help
your doctors to determine if you have high- or low-risk disease.
Staging will also be done by using imaging tests to see
where the lymphoma is, and how far and fast it has progressed since
the last treatment.
Pathology experts often advise that the biopsy should be of
the largest lymph node that can be safely resected (removed surgically)
to maximize the chance of getting representative cells.
"A major mistake
to avoid in following patients with diffuse large B-cell lymphoma
in complete remission is to initiate therapy for apparent relapse
without a biopsy. While most patients with new lymphadenopathy
will have recurrent lymphoma, it is certainly not true for
all." Armitage,
How
I treat patients with diffuse large B-Cell lymphoma
Also see: Indolent,
Recurrent Adult Non-Hodgkin’s Lymphoma ~ Best Practices
Cancer.gov
Consult lymphoma experts
After you have the information they will need to help you
make an informed decision. At the consults, job one is to
determining if the relapsed lymphoma is high- or low-risk
disease and to choose the goal of treatment accordingly.
Prepare for these consults by summarizing the relevant information
and by having all pathology information at hand, particularly the
latest biopsy and imaging reports and slides, and two copies of your
questions (one for you and one for your doctor).
Indicators of of high- and low-risk disease include
but are not limited to:
-
Was the disease
sensitive to initial treatment?
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How long was the
response to initial treatment?
-
What is the growth
rate before and after treatment? - is it stable, waxing and waning?
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Is the lymphoma causing symptoms?
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Is the lymphoma
causing low blood counts?
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Is it sensitive to
subsequent biologic, single agent, or low dose chemotherapy
treatment?
-
Is there evidence of transformation (diffuse growth pattern) from pathology analysis of tissue?
There are two basic goals of treatment:
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Management - watch & wait,
followed by judicious use of low toxic biologic*
and/or chemotherapy when treatment is indicated by symptoms,
progressing disease, poor quality of life, low blood counts,
or even patient preferences.
The general idea is to treat the lymphoma as a chronic
condition,
to minimize toxicity, and to keep your future options
open.
Examples of biologics are Rituxan, Interferon,
Leukine, therapeutic cancer vaccines (investigational).
Chemotherapy may include Chlorambucil,
Cytoxan,
Low
dose oral PEP-C, Prednisone
and combinations of agents.
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Curative Approaches / Complete and Durable
Response* - use of combination or
sequential therapy at higher doses in order to eliminate
the disease, or aggressive
components of the disease.
* While indolent lymphoma is not considered curable with
standard approaches
there is encouraging data with Bexxar, Zevalin, CHOP+R that raise the question if
cure is not achieved at an increasing rate.
Why not always try to cure *indolent*
lymphomas?
The potential to obtain the goal has to be weighed against the
toxicities and risks
of the treatment. For example, if the probability of obtaining a durable
response is
low for an aggressive therapy, you may be exposing yourself to unnecessary
risks for minimal gain. |
Evidence-based best practice
Resources
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Treatment
decisions - factors that can influence treatment goal,
type, and timing
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Managing Indolent Lymphomas in Relapse
Working Our Way Through a Plethora of Options asheducationbook
full/2000
Fernando Cabanillas, (Chair), Sandra Horning, Mark Kaminski
and Richard Champlin
In this review of the alternative therapies a panel of three
expert hemato-oncologists
each discuss their approach to
the management of a 49-year-old patient with
a
relapsed indolent follicular lymphoma.
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Treatment options after
relapse of indolent lymphoma http://tinyurl.com/32jrpx
Dr Leonard, Dr. Coleman, and Dr. O'Conner
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NOTES
Limitations of pathology findings: The pathology reports
can have limitations. Sometimes small cleaved indolent behaves aggressively.
Sometimes mixed, large, and small cell lymphomas (sometimes called grade 2) behaves indolently.
The clinical behavior can be as important as the diagnostic tests,
which do not yet account for all factors that contribute to
malignant behavior.
Staging: A second scan at two months
following relapse could be appropriate to
gauge how clinically aggressive the lymphoma is. If the clinical behavior is indolent,
watch & wait might be recommended ...
just like many do when originally diagnosed. It's not
uncommon for a relapse to appear abruptly, but then slow down and
stabilize. It can take time to judge the true clinical
behavior of the relapsed disease.
Response to
treatment evaluations: "Specifically, assessing response
[with PET] may be useful in two possible situations: to evaluate tumor response at the end of a full course of treatment, or to predict tumor response early in the course of a prolonged treatment regimen. In the first instance, early detection of treatment failure may permit a physician to institute a second-line therapeutic approach. In the second instance, accurately predicting treatment failure may allow the physician to substitute an alternative regimen, without subjecting the patient to the toxicity of the full course.
" Peter E.
Valk,
MD
Keep abreast of clinical trials for agents that have low toxicity
and little risk of precluding subsequent treatments. These
may be best tried when treatment is not required as an alternative
to watch & wait.
If the lymphoma is refractory (resistant) to
standard treatments, you might
have to consider stronger measures or novel combinations of cancer
therapies. Low dose chemo regimens like PEP-C, investigational
targeted treatments
See also Pipeline and
Protocols for Refractory
lymphomas and Clinical
Trials of Interest however, these are not complete lists of
protocols to consider. Be sure to consult experts in the
field.
Know what clinical trials are available and what seems
promising and low toxic. Consult with non-treating lymphoma experts
who have intimate knowledge of your disease, treatment history,
and all available standard and emerging treatments. Educate
yourself about the potential risks and benefits of new approaches.
More on honesty. It's important that patient and doctor pay attention to the
"messages," or trends of the clinical course of your
lymphoma. Failing to see the "writing on the wall"
can be a
problem. Getting too bulky can be a problem. So too can be sticking with a
treatment too long when it's failing to benefit you.
Burning bridges: Try to avoid treatment agents that
may preclude the use of other approaches, or undermine immunity
too profoundly. However,
when the goal of treatment is to cure or obtain a durable remission,
meeting the goal can offset the risks and toxicities,
and the risks must be seen in the context of the clinical situation
and the risks of the disease.
Talk to your doctor about collecting stem cells before or after the treatments you are
considering as a further precaution and use in the future, particularly if
you have high-risk disease.
Important note: Only your doctors
have the clinical details necessary to help you to make informed
decisions. But do not limit your horizon to the perspectives
of one doctor. It can be helpful to consult outside lymphoma experts as
well. Please
do not rely on the anecdotes and theories of
patients.
See also Factors that determine the approach
and timing of treatment
Communicating honestly with your doctor and becoming informed about the
potential risks and benefits of all the treatments appropriate to
your diagnosis are keys to managing lymphoma and
treating it effectively in a timely manner.
