About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma

 

About Lymphoma > Patient Stories - Benefits, Limitations, and Policies

Last update: 11/06/2015


Patient Stories - Benefits |Limitations and Policies

click here to
Share your Story


Benefits

Patients can find comfort and reasons for hope from personal stories

Personal stories showing that treatments can be effective and tolerated can be a reassuring to the newly diagnosed patient and caregivers. 

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 treatable. 


Limitations

Here we provide information to consider and questions to ask oneself
when reading personal stories and also published studies

bullet

Each 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
 

bullet

Does Mary (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 treatments.
 

bullet

Was Joe's outcome common for his indication?  Was his outcome exceptional or typical? 
 

bullet

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? 
 

bullet

Is Joe 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 subscription.

Be mindful that an individual outcomes can't tell us what would have happened:
   If he or she did something else or
   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?   

In all 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 indication.

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. 

See also When Lay persons give Medical Advice and the Problems with Testimonials
 


Policies

bullet

All stories are welcome if we judge them to be authentic, sincere, and factual.
 

bullet

Identifying information will be removed to protect your privacy.
 

bullet

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. 
 

bullet

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.
 

bullet

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.
 

bullet

We want to emphasize that the stories that you read here or elsewhere should NOT 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.

 

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright 2004,  All Rights Reserved.