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Patients can find
comfort and reasons for hope from personal stories
showing that treatments can be effective and tolerated can be
a reassuring to the newly diagnosed patient and
It can be reassuring to learn that
Joe or Mary, is like me.
He was overwhelmed and fearful too when diagnosed. He
has a name. We share the same diagnosis -- perhaps we
are the same age. His story and that he is
still alive and enjoying life many years after his
diagnosis gives me hope.
Importantly, in general, the medical literature also
supports optimism about the potential to effectively
treat lymphoma. It shows that some types of
lymphoma can be cured and that other types can be
managed well as needed. Lymphoma IS often
Here we provide information to consider and questions to ask
when reading personal stories and also published studies
person's lymphoma can have a unique biology and response
the same treatments - even for the same type.
For example, each patient's follicular lymphoma can have
very different mutations and host-tumor profiles.
That Joe did poorly with the treatment that you will
receive does NOT mean that you cannot benefit from it!
Physician's prescribe treatments based on outcomes from
clinical trials, but also their patient's diagnosis, unique
circumstances and status -- such as our age, fitness,
and the number and types of prior treatments (our indication).
See also Settings, our unique clinical circumstance
(who did poorly -- or very well) have the same type of
lymphoma? What about her prior treatments?
There are about 50 types of lymphoma and many so-called
indications or circumstances. Be sure that the
study you a reading or the story that concerns you
corresponds to your indication, such as
previously untreated follicular lymphoma with advanced
stage. Then also consider that each person's
lymphoma can have a unique biology and response the same
outcome common for his indication? Was his outcome
exceptional or typical?
Only a study that follows all the
patients on a regular basis can inform us about how long
the outcome lasted
How long did the outcome last? Did Mary update us
when here condition changed?
trying to persuade me with his story?
This can be a red flag. Sometimes it's a well-meaning attempt to help others.
Sometimes its an attempt to sell a book or a
Be mindful that an individual outcomes can't tell us what would have happened:
If he or she did something else –
if nothing was done at the time, or
if nothing more was added to Joe's treatment.
Stories cannot tell us how likely it is that the result
can be repeated in other - if his outcome is typical or exceptional?
clinical studies there will be a predefined denominator (the
number of participants) that informs about the rate of good
and bad effects. Only this method of study can
tell us what others might expect … or how a new
treatment compares to another way of treating the
Your doctor will base his or her recommendations on
such studies, and also on your unique clinical circumstances.
For these reasons we advise and urge you to
rely on the advice of your trained doctor and specialist
in the field.
When Lay persons give
Medical Advice and the
Problems with Testimonials
All stories are welcome if we judge them
to be authentic, sincere, and factual.
Identifying information will be removed
to protect your privacy.
The story should be factual and should
not promote a way for others to treat lymphoma.
Each lymphoma (even if of the same diagnosis) can be
unique clinically, such as: growth rate, sensitivity to
treatments, location near vital organs, bone marrow
involvement, and so on. The biology of the
lymphoma and the patient can have unique characteristics
that will result in very different clinical courses, and
responses to the same treatments. For example, normal
genetic variations in an individual's immune system may
influence the response to Rituxan.
Outcomes from clinical trials are
welcome, but we will be sure to remind that individual
outcomes for study drugs do not predict good or bad
effects in others.
All of the outcomes from every
participant must be published before we can know if it
can provides benefit and the rate of good and bad
effects. Will 1 in 100 have that side
effect? Was the remission or poor response in 1 or
200 participants? Was the
outcome due to the study drug or the standard
pretreatment? These important details
cannot be known from personal stories - the reason we
edit out promotions from individual stories.
Alternative medicine stories will not be
posted here - UNLESS it is part of a clinical trial to
test if the intervention is effective. Here too,
all of the outcomes from every participant must
be published in the literature before we can know if it
can provide benefit and the rate of good and bad
effects. Giving unproven interventions outside of
a clinical trial is unethical. Period.
We want to emphasize
that the stories that you read here or elsewhere should
be considered a way to guide your care, although they
can appropriately inspire questions to ask of your doctor.
We post patient stories because they can provide hope and
encouragement -- regarding what is possible - noting that it
IS POSSIBLE to effectively treat lymphoma.