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Patients Against Lymphoma

 

Guidelines at Diagnosis or Relapse

Last update: 08/12/2015

 

 

ABOUT PAL

Founded by patients and for patients - in consultation with our Medical  and Scientific Advisors

We provide evidence and science based support and information.  Independent of Health Industry Funding. Dependent on your support!

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INDOLENT LYMPHOMA:

ON THE PAIN OF DIAGNOSIS and RUSHED DECISIONS:

 "Somehow there are some doctors who think that after they tell you "you have cancer" you are supposed to be calm and completely rational and not even think about crying. The first oncologist  I went to described me as hysterical and thought I should take immediate treatment "if only to calm yourself and let you believe you are doing something." 

I think he was hysterical.  Not me. I reacted like any person hearing that diagnosis would.  Sad, angry and confused.

The period immediately after diagnosis is the exact wrong time to make a decision [can be - for the indolent lymphomas].

Fortunately, with low grade NHL you have the luxury of some time to think.

I took some time, saw two other oncologists and they both told me to do nothing, that the survival statistics showed that early intervention did not improve survival. I left the first oncologist.

 That was five years ago.  I need treatment now, but am happy that I didn't panic and let the first oncologist dictate what would have been an awful choice for me." 

- Ronnie - (NHL-follic)

 

ON HOW EASILY MISTAKES CAN HAPPEN - THE IMPORTANCE OF HAVING SOMEONE WITH YOU, AND NOT ASSUMING: 

HS wrote:

Yesterday I went for a biopsy on my mesentery (an abdominal sheath), and as I was having my b/p etc checked one nurse said to the trainee, she is having a liver biopsy.....I said no, not me....she went and checked, came back and said they were wrong, it was the mesentery. 

When a second nurse came to give me something for pain etc, she said, oh, a liver biopsy! I said NO, that is the other lady in the next bed....so this nurse checked, and then wrote mesentery on my file, which had said liver.... How easily mistakes can occur...its scary....

 

Chapters

Before Diagnosis | The Biopsy | The Pathology Report | Encouragement   
Life Style Changes Can Help | Choosing a Doctor | Preparing for Consults ...

Mainly we keep saying: Try your best to be uninteresting - a dull case!  It IS possible.

This topic is for anyone who has just been diagnosed - or just prior to the diagnostic evaluation.

A lymphoma can be a serious disease, but it is also treatable even at a very advanced stage.  Some types of lymphoma are readily cured, other types can be managed well as needed.

The rarer subtypes require more attention than most diseases since experience and therefore expertise is less common, so you may need to get more involved with your diagnosis (seeking a second evaluation) and treatment (considering clinical trials) and also seek an expert at a major academic institution to work with your treating physician.  

For the indolent lymphomas it can be more likely that you will die with the lymphoma than from it. So let's get started on your new study project. Here are the steps we recommend you take as soon as possible.

Stress and Worry Before the Diagnosis

The stress and worry prior to a diagnosis can be overwhelming. Enlarged lymph nodes can raise concerns about cancer and lymphoma - despite the fact that in most cases enlarged lymph glands are caused by infections that go away with time or with treatment of the infection. 

The Internet can make our anxiety worse, much worse, because the quality and accuracy of the information it provides can be uneven, or plain wrong.  

... The website might not note that there are other and more common causes for enlarged lymph nodes, or for a rash, or for night sweats that concern you.  The website resource may not explain that lymphoma is rare in young persons - making an alternate diagnosis much more likely. 

There is no certainty in life.  That said, prior to the diagnostic test there is good reason to be hopeful that the symptoms that concern you are NOT caused by a lymphoma.  Here are some of the key points to keep in mind:
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The symptoms and signs of lymphoma are common to many other medical conditions.

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Younger age decreases the odds that you have a non-Hodgkins lymphoma which affects mainly older persons - median age is about 65 years.

(Hodgkins occurs in young people, but the incidence is low - "The age-adjusted incidence rate was 2.8 per 100,000 men and women per year. These rates are based on cases diagnosed in 2004-2008 from 17 SEER geographic areas.")

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When a lymphoma does occur it rarely presents as a medical emergency -
there is in most cases ample time to get the diagnosis right.   Lymphoma is also treatable.

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When discussing the symptoms that you have with your doctor,

First write them down in a concise manner - in the order that the symptoms appeared.
Then prepare and rehearse your story

On this, see:  Opinion: When doctors don't listen listen
By Dr. Leana Wen and Dr. Joshua Kosowsky,

Key Guidance from the American Family Physician:
 

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"Lymphadenopathy refers to lymph nodes that are abnormal in either size
(greater than 1 centimeter), consistency or number." ... classified as:

Generalized - if lymph nodes are enlarged in two or more separate areas of the body

OR

Localized - if only one area is involved." (less suspicious)
 

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Enlarged lymph glands are common, so don't rush to judgment!

"Although the finding of lymphadenopathy sometimes raises fears
about serious illness, it is, in patients seen in primary care settings,
usually a result of  benign (not cancer) infectious causes."

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"A three- to four-week period of observation is prudent in patients with
localized nodes and a benign clinical picture." 
 

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Antibiotic therapy is sometimes tried first, before a biopsy. 
However, be aware, only bacterial infections will respond to antibiotics.
Therefore, if the lymph nodes remain enlarged it may not be a cancer.

Increasing suspicion of a cancer - the need for a biopsy:

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Generalized lymphadenopathy that persists (not limited to one area)

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"Supraclavicular nodes are the most worrisome for malignancy."  

Source: American Family Physician

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Any painless node that persists for 1-2 months.

"When a node biopsy is indicated, an excisional biopsy (removing the entire lymph node)  of the most abnormal node will best enable the pathologist to determine a diagnosis."

* Background on this from AJCP.ascpjournals.org:
Fine-Needle Aspiration Cytology in the Diagnosis of Lymphoma The Next Step
Linda M. Sandhaus, MD http://bit.ly/1aNXroh

* And from the Mayo Clinic
Swollen lymph nodes Symptoms - Diseases and Conditions

Medical Resources on evaluating enlarged lymph nodes:

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Lymphadenopathy: Differential Diagnosis and Evaluation - American Family Physician 
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Evaluation of Lymphadenopathy dermaamin.com
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Reactive Lymph Nodes in Pediatric Practice ajcp.ascpjournals.org

Alan D. Ramsay, DM, FRCPath

Frequently asked questions before a diagnosis:
 

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Can a blood test show evidence of lymphoma?

Rarely.  In almost all cases a biopsy is needed. In most cases, a full excisional biopsy is preferred when a biopsy is needed - a fine-needle aspiration (FNA) can be insufficient to get an accurate initial diagnosis.

See also our topic on Symptoms of lymphoma

 

The Biopsy

A biopsy is the taking of a sample of the cells (from blood or most commonly from tissue) for diagnostic or scientific evaluation.  This can be done with a needle or by surgical removal of a lymph node or lesion.  A biopsy is essential in order to exclude or diagnose a lymphoma.  The tests done on the sample are also needed to determine the type of lymphoma and the grade, which is required in order to guide the approach to therapy.

The gene rearrangements of the lymphoma cells can vary from patient to patient. (Mary's follicular lymphoma is not the same as Robert's).  Increasingly, therapy will be tailored to the tumor biology of the individual patient;  the findings will guide what treatment agents to use or avoid, and what approach to therapy is needed -- such as aggressive or conservative.

If it is feasible for you, we recommend that you go to a research center that can snap-freeze a portion of the tissue for advanced diagnostics and research, which is vital to making progress against lymphomas.

You can click here to find NCI-Designated Cancer Centers - using a Map

See also our topic page on Biopsy

The Pathology Report  

The completed report provides detailed information about the diagnosis or normalcy, such as

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Appearance (morphology), architecture, structure of the cells,
such as small or large, cleaved, diffuse or nodular

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Cell markers found by "staining," or immunohistochemistry tests:
such as cd20, cd22, cd30... helping with identifying the cell of origin
(CD stands for clusters of differentiation)

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Grade, the proportion of large to small cells

Note: Grade is often confused by patients with stage, which is done with imaging to show how widespread the lesions are in the body.  Stage is not diagnostic.  It shows areas of enlarged lymph nodes, but not the cause, which can be from inflammation.

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Gene rearrangements, such as bcl-2 or bcl-6, c-myc ...

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A diagnosis summary: the section where the pathologist gives a concise pathologic diagnosis. It includes the tumor type and cell of origin, or findings of normalcy (the sample is benign - not a cancer).
 

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Other findings may be reported, such as:

Clonality: Are the lymphoid cells all alike?- clonal (monoclonal). Monoclonal supports the diagnosis of a lymphoid neoplasm although it is not considered an absolute indicator. 

Reactive hyperplasia:  indicating that the increase in the size of a lymph node is due to normal immune cells increasing in number in reaction to a pathogen (bacteria, or virus).

See for other common diagnostic terms: Diagnostic Terms 
Cell and tissue types | BenignBorderline or Vague and Cancer

We urge you to ask for a copy of the pathology report for your records
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It can help you to identify support groups with a focus on your type of lymphoma
 

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You will know what research studies and report related to your diagnosis.
 

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You will need it to seek advice from lymphoma experts.

We believe it's important to consult with experts and to become informed about your type of lymphoma, and all available treatments in order to receive optimal care. 

We recommend a second evaluation of the sample cells to confirm that the diagnosis is correct.  A second evaluation can be particularly important for the uncommon subtypes of lymphoma, or types that are inherently difficult to diagnose correctly.
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Getting a second evaluation is a fairly routine procedure.  Studies show that a second review can sometimes change or refine the diagnosis. The slides are sent from one institution to another.  The report on the second evaluation is sent to your oncologist, who will discuss with you the findings.
 

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An accurate diagnosis is critical to receiving the most appropriate treatment, as each lymphoma type can be treated very differently. Unfortunately an incorrect diagnosis, while not typical, is more common than we would like to think. 

Patient story: I want people to be aware of the importance of a second opinion. For almost eight years I have been treated for Mantle cell lymphoma. I was sent to a radiologist for evaluation of treatment and he questioned my diagnosis as Mantle cell is very aggressive and if I have had it for 8 years and I look so healthy, he said he has treated many patients with mantle cell I did not fit the diagnosis. He had previous biopsies sent to an entirely different hospital and have been diagnosed with low grade indolent lymphoma.

 
See
Pathology - Getting a second evaluation

Encouragement

for persons with newly diagnosed or relapsed lymphoma

Overview: 
Information can ease your fear ... Lymphoma is treatable!
Your prognosis is not based on statistics
 Some life style changes can help


Information can ease your fear

The diagnosis of lymphoma is a blow that can take your breath away.  We hear the words "advanced" and "cancer," and will absorb little else our doctors say ... and fear the worst.  The stress of the diagnosis can be acute for the patient and for the caregivers. 

Time is needed to adjust and to learn.  Lymphoma can be a serious disease, however it's important to appreciate that it's typically very responsive to treatments even at advanced stages. 

... Hodgkin lymphoma, for example, has a high cure rate.  Many of the aggressive lymphomas, such as DLBCL, are cured, and the indolent types can be managed well as needed.  Recently, it was reported that the survival of patients with follicular lymphoma is often equivalent to persons of the same age without the diagnosis - the key milestone being event free survival (EFS) at 12 months after diagnosis or initial treatment. (ASH 2014) EFS means to be without any symptoms or medical issues related to lymphoma.

There can be, of course, no 100% certainty in life or in medicine. Outcomes will vary by the type of lymphoma and the unique clinical circumstances of the patient. That said, again and again, we observe that the anxiety level of patients will lessen with time, with experience, and with information.

Here is background that we trust will help you to feel more optimistic about how lymphoma is treated today ... noting that investigational targeted treatments are bound to improve substantially in the very near future!

Lymphoma is a treatable blood cell cancer that can be effectively treated at an advanced stage.  Lymphoma in the marrow is also reversible with treatment.

Lymphoma in the bone marrow (the nursery for blood cells) is not especially concerning because this is an expected place for normal lymphocytes to be found.

Many common aggressive types can be cured.  Treatment begins very soon after diagnosis with curative intent.  It can also be cured on relapse in many cases.

For the indolent types the approach and timing of treatment varies.  It is common to monitor or observe (watch and wait) an indolent lymphoma until there is a need to treat - when there are symptoms or evidence of steady progression. 

Dr. Bendandi notes: in this setting the likelihood of destroying most of the tumor with subsequent treatments is pretty much the same, irrespective of whether we treat right away (that has some side effects and risks) or carefully watch and wait (without side effects).

Sometimes, but not commonly, treatment of indolent lymphoma is never required. 

Treatments are improving rapidly with clinical research.  A reason we feel that clinical trials should be considered routinely.

Standard treatments for lymphoma are generally less harsh and more effective than treatment for other cancers.  Standard treatments are methods that experts agree are appropriate, accepted, and widely used. These treatments have been proven useful in fighting lymphoma in the past. 

Many patients continue to work through treatments.  Why?

Lymphoma cells arise from immune cells called lymphocytes.  These cells are "programmed" to divide and grow rapidly, but also to die off rapidly when the task of fighting an infection is done.

Similar to normal blood cells, lymphoma cells typically die quickly in response to relatively low doses of chemotherapy or radiation treatments. 

There is a reserve of stem cells in the bone marrow that will replenish the supply of blood cells after treatment.  Stem cells, because they divide rarely, are less sensitive to the effects of standard therapies. 

Related topics:

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Treatment Decisions

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Factors that Determine Treatment & Timing

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Standards guidelines for when to treat GELF | NCCN 

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Treatment-related Questions for your Doctor 

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Watch & Wait

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Options at relapse?

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Treatment overview

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Treatment types

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Clinical trials - when to consider and how to find

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Agents that target disease pathways

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What's a drug?


Prognosis is not based on statistics

The purpose of statistics is to find the average results and trends in LARGE groups.  These calculations are based on therapies used in the past.  Survival statistics should not be confused with an individual's prognosis, which is based on unique clinical factors, such as your age, type of lymphoma, where it is in the body, the underlying biology, and the response to therapies.  

Fortunately, for lymphoma a different class of therapy can be effective when the first treatment does not work optimally.  Cure and or achieving a durable remission can remain feasible and a realistic goal, even after multiple relapses.   Initially and sometimes at relapse the indolent types of lymphoma may not require any therapy, because they can grow very slowly without causing symptoms.

Misinformation is abundant on the Internet.  If you are considering alternative practices please first review our comments that follow - explaining why you should be skeptical about such claims.

 

Life Style Changes can Help, but what about Alternative Medicine?

Overview: 
Life style changes can help
Testimonials (why they can't be trusted)
Limitations of Cell Culture and Animal studies
Alternative Medicine?  | The Power, or Tyranny, of Positive Thinking?

Life style changes can improve your fitness, general health and quality of life.  These are sometime called complementary or integrative practices.  Here are suggestions with explanations further below.

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Take part in enjoyable forms of regular exercise ...
to improve your fitness, to relieve stress, and to have fun

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Adopt a diet that is delicious and promotes good health ...

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In times of stress, consider meditation, prayer, yoga, and aroma therapy

For chronic anxiety and depression, please consult a professional.  Professionals can offer effective interventions to relieve chronic unproductive worry and depression. 

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Continue to live your life fully, such as by setting goals, doing self-actualizing work, and participating in social, artistic, or career activities that you find rewarding. 

Lymphoma survivors can and do often achieve their goals and a good quality of life.  The diagnosis can sometimes increase our appreciation of what is important in life.

Complementary medicine: 
can life style changes help to improve outcomes?

Regular exercise is beneficial.  It can be safe to do even during treatment.  Regular exercise activities can improve your general health, fitness, reduce fatigue, and can improve your state of mind.  Unless done to excess, exercise has no major risks or side effects.  Maintaining and improving your fitness through exercise is also strongly associated with better survival and a decreased recurrence rate for some cancers.

Source:  MacMillan Cancer Support: "Move More: Physical activity the underrated 'wonder drug.'" http://bit.ly/1ygeKig

A healthful diet can also help to improve your fitness while decreasing the risks of developing secondary medical conditions.  Conversely, a poor diet can lead to health problems that can limit your ability to tolerate and recover from therapy. 

Can diet, herbs, or vitamins be used to treat lymphoma?
 

It can be prudent to take vitamins (or choose foods more wisely) if you have a deficiency, based on credentialed tests.  A healthful diet can make a positive difference in some types of medical conditions (such as diabetes, heart disease, and high blood pressure) and it can help to improve our general health. 

Unfortunately, there is no clinical evidence at this time to support the use of specific diets, herbs, or vitamins as a treatment for lymphoma - or plausible science supporting the theory. 

While deficiencies in vitamin D are associated with higher-risk aggressive lymphoma, it's not known if supplementation with this vitamin changes the prognosis.  Certainly, most people with low vitamin D levels never get lymphoma ... so it is not considered a causal risk factor.  It may be, for example that a faster growing, higher-risk lymphoma sequesters (uses up) this vitamin - in which case the deficiency is a result of the lymphoma, not a cause of it.  Scientists just don't know.

A relatively new understanding of  the role of epigenetics in cancer and cancer prevention has led to a wave of promotions of diet as treatments for cancer - or to help manage the disease.   Some foods may have epigenetic effects, but at this time the potential seems limited to cancer risk reduction for diets adopted over many years or decades.      


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Observations and testimonials are not reliable

"For centuries doctors used leeches and lancets to relieve patients of their blood. They KNEW bloodletting worked. EVERYBODY said it did. When you had a fever and the doctor bled you, you got better.  EVERYONE knew of a friend or relative who had been at death’s door until bloodletting cured him. Doctors could recount thousands of successful cases."

Today we know that patients did well in spite of bloodletting, a practice based on primitive notions about the nature of diseases - attributed to bad elements in the blood.  The lesson from history is that observations are not reliable as evidence. 

In any observation or case report, even when from a reputable source, you can't tell what would have happened if something else – or nothing was done; you can't predict if others are likely to be helped or harmed by the same approach.

In modern clinical research the number of participants in a study is pre-specified and assessments are made in the same way. One approach is compared to another in late phase testing – the patients assigned to study groups randomly.  In all clinical studies you have a predefined denominator (the number of participants) that informs about the rate of good and bad effects.  These methods tell us what others (YOU) can expect … and how it compares to another established treatment. 

Testimonials have all of the limitations of observations  … with much less certainty about the facts: 

Did the person really have the medical condition?  
Was it a false diagnosis of a cancer? 

You don't know how the outcome was measured: Was it that the patient felt better?  What tests were used to measure it?  Did the benefit last a week or 2 months?  

You can’t know what other medical treatments were given shortly before or after. Finally, people who provide testimonials and later die or get very sick cannot provide updates. 

See also our printable brochure on Testimonials


... cell culture experiments (are starting points only)

The theories promoted to self-treat cancer are often borrowed from the literature... mainly from preclinical sources:  cell culture and animal experiments. 

Cell culture or in-vitro experiments:

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Cannot account for the dose that's needed to have a similar effect in the body

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Cannot not tell us if the compound is absorbed into the blood ... or if it is  merely excreted

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Cannot provide information about the side effects of the compound when given at dose showing activity in the test tube.   Is if feasible or safe to take that much of it?

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Will not tell us if the herb you buy in a store (which is not regulated by the FDA) is free of contaminants. 

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Giving an herb at low dose could do harm if the compound is active. 

Tumor cells adapt to low or subclinical doses of treatment compounds of any kind.   The first step in the clinical development of a cancer treatment compound is to get the dose right and to determine the safety of the agent at the active dose (therapeutic window). 

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Cancer cells in a test tube are like fish out of water

Taking lymphoma cells from the body and putting the them into a cell culture is all that's needed to kill these cells.  Unlike bacteria, tumor cells are typically very challenging to keep alive in any cell culture medium.  

... Animal experiments  (better ... but also only a starting point)

Cannot account for the profound differences between the mouse and human host environment.  The mouse immune system is different.  The tumor cell line is different. 

The toxicities and activity of the compound in the mouse rarely predict activity in humans.  See A mouse is not a man or a women by Bill Rose 

So for complementary medicine, we recommend caution and skepticism about practices that have not been tested, unless, perhaps, when focused on activities to improve quality of life and reduce stress, such as meditation, yoga, and aroma therapy, exercise and maintaining a healthful diet.

If a vitamin or herb (used like a drug) is found to improve sleep or decrease fatigue in sufficiently powered and controlled clinical studies, then this practice will become part of regular medicine.  In such cases your doctor will be aware of the potential risks and benefits; the brand and dose will be understood and also the side effects.  

Amer J Translational Research 2014:
Lost in translation: animal models and clinical trials in cancer treatment http://1.usa.gov/1Np5DyL 

"the average rate of successful translation from animal models to clinical cancer trials is less than 8%. " 

"Despite successful pre-clinical testing, 85% of early clinical trials for novel drugs fail; of those that survive through to phase III, only half become approved for clinical use [3]. The largest proportion of these failures occurs in trials for cancer drugs [4]. Furthermore, fewer than one in five cancer clinical trials find their way to the peer-reviewed literature, generally due to negative findings [5]. Although logistical and study design issues are often identified as the root cause of clinical trial failures, most futilities in fact originate from molecular mechanisms of the drug(s) tested [6]."

 

Alternative Medicine?

Testimonials can appear convincing, initially, to anyone with no formal  background in the disease - virtually all of us at diagnosis!   The stories appealing to what we want to be true ... such as if you adopt our special diet, take certain herbs ... and the lymphoma will go away or stay at bay.  

Conspiracy theories are used to explain why our doctors don't recommend alternative practices, which promotes mistrust of modern medicine - that provides tested therapies for lymphoma.   

Please consider that scientists and their loved ones also get cancer, as do medical doctors and regulators.   There is NO conspiracy to keep cures from children and adults affected by cancer. 

If you ask those who promote alternative medicine for clinical evidence, you may be chided for being closed minded.  Being open-minded includes being skeptical about medical claims.  Theories are easy to come by - anyone can make one up. Consider that even the most promising, scientifically plausible theories about treatment need to be tested in patients to see if they are truly effective and safe.  And this is as it should be! 

... Without standards for evidence, as in the "Wild West," we'd have many thousands of choices  but NO way to make an informed choice.   Anyone, any group, can make a claim.  Fortunately, in our society you have to prove a that your theory works ... by running adequately sized and controlled trial in people ...  not in mice or test tubes.   It is also not true that nature compounds are not included in clinical trials.  Indeed many therapies for cancer are based on compounds derived from natural sources (such as taxol, etoposide, vincristine to name a few).

So we urge you to avoid alternative medicine doctors who may promise that they will cure you, and groups that patently dismiss conventional therapies. 

By definition, alternative medicine means an intervention that has NOT been tested or proven safe and effective for the medical condition.  Even "benign" alternative interventions (vitamins at moderately high doses) can do harm if the belief leads you to postponing a tested and approved treatment.  In some cases the financial toxicity for alternative (fraudulent) practices can be high as well. 

 


On the limitations of authentic personal stories

Positive stories provides us with needed reassurance and hope.  It is natural and understandable to seek such stories - and there are many for lymphoma.  However, on the flip side we can become distraught when reading about bad outcomes.   So it's important to appreciate that our prognosis is unique - by support system, our age, fitness, immune status, treatment history .. and also by the unique molecular biology of the disease, which is also different from others even with the same diagnosis. 

So we will find positive and negative stories on the Internet and support groups.  Neither predict what will happen to us or can be used reliably to guide our treatment choices. 

The following media item describes why this is so very nicely:

*Huff Post 2014;
Your Cancer Is Not My Cancer: The Danger of Comparison  http://huff.to/1i9r6gF 

"I remind myself that I cannot compare my cancer to anyone else's cancer, even those who appear to have the exact same diagnosis and staging as mine. Their cancer is not my cancer. Their outcome is not my outcome. And no good will come of allowing myself to go down the mental rabbit hole of projecting someone else's outcome onto my future."

There is science to back this up. The jargon used by scientists to describe the variation in the biology in the same type of lymphoma is called disease heterogeneity.

Not recognizing the limitations of personal observations and the fact of disease heterogeneity can lead to promotions by patients for an approach that seemed to help them (and therefore is "certain" to help you too!).  The misguided reasoning goes something like this: the strategy worked for me ... so now I must convert others to the strategy I used so that you can be helped too. 

Indeed with almost any Internet search we will find such testimonials for a broad range of alternative approaches.


The power, or tyranny, of positive thinking?

Can maintaining a positive attitude help to keep the disease in check, or improve the response to treatment?

The question has been studied (see below) and the evidence shows no link between having a positive attitude and outcomes.    This is good news in a way ... as we don't have to worry about worrying, or blame ourselves for having the condition, or if the condition gets worse.

For lymphoma and other cancers it is the specific mutations in the cell that causes resistance to treatment or more rapid growth of the cells, not one's beliefs.  The solution is not to blame oneself or to try to be more positive ... it is to change the type of treatment, which fortunately is usually possible for lymphoma due to the wide range in types of treatments available to us.

For more information on the limits of positive thinking we recommend:

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Humansideofcancer.com: Tyranny of Positive Thinking

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ACA.org: Attitudes and Cancer

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PAL: Caveats and limits of positive thinking

Related topics:

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Common Myths

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When Lay Persons Give Medical Advice,
for background on why it's important to rely on the guidance of medical professions,
and not patient stories, when making treatment decisions.

Return to top

Choosing and Consulting Physicians and Experts

Choosing a knowledgeable oncologist, and having trust in his or her recommendations is very important. Attributes of an excellent oncologist include:
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Experience in the treatment of your specific type of lymphoma
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Participates as an investigator in clinical trials, or is open to considering clinical trials
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Actively participates in professional organizations dedicated to continuing education and professional development in the field?
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Has empathy, compassion and the ability to communicate and partner with you

 
  • Second Opinions

    NEW and important: Trial Talk - experts to consult for second opinions and to inquire about clinical trials!

    Do not be afraid that seeking a second opinion will insult your doctor. Good doctors will be open to the perspectives of other good doctors.  

    Why should patients consult outside experts and become informed?  Even trained oncologists can have conflicts of interest, biases, or gaps in knowledge - especially if he or she does not specialize in lymphomas.

    Investigators may have an intellectual bias about an investigational therapy they are testing.  A community doctor might have a bias in favor of what is easiest to administer. 

    An HMO physician may prescribe what is least expensive. Another doctor might be influenced, unconsciously or not, by sales promotions from the drug industry. 

    Patients expressing their desire to continue working without interruption may influence a busy physician to prescribe what meets the immediate needs, without fully discussing possible negative long-term implications of that treatment decision ...   

    Still another reason to seek a second opinion is that it sets up a kind of peer review, which is likely to be an incentive for your local community doctor to be more focused on your care and the decision process. The good community doctor will encourage a second opinion by experts, and will be willing to carry out the recommendations, when possible ... or send you elsewhere when not. 

    David writes: "Very few people in our trial were "offered" the trial by their doctor . . .  For me  it was nearly instinctive NOT to settle for what was available locally, but look for what the options were anywhere in the US."

    Sue writes: "If possible, seek second and third opinions – even if your "Health Plan" does not cover it.   Contact the pathology department of  the center in which the biopsy was done.  Ask them for the slides, or if they can send the slides to the center you are going to for a second opinion. For second opinions at major cancer centers, having the slides is considered essential." 


    Preparing for Consults

     

    The first meeting with your oncologist is more important than you may realize. Preparation for consults can make all the difference.  We provide guidance on how to prepare for consults and how to develop a productive and mutually respectful relationship with your healthcare providers  

    Write down a concise description of your medical history and situation so the experts you consult can get up to speed quickly. It should include the following:  

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    BASIC - Your age, weight, height, performance, child-bearing info etc.  
     

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    DIAGNOSIS - cell type, grade, stage, markers (cd20, bcl-2 etc.)
    See Characteristics of  Non-Hodgkin's Lymphomas: Cell type | Histology | Grading | Staging
     

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    Call the pathology department in advance and arrange to pick up your slides. Bring the slides with you. This request is routinely asked of the pathology department.
      

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    TREATMENT HISTORY- including dates and types of treatment, treatment response, and duration of response. 
     

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    MAKE a WRITTEN LIST of all your questions and give it to each expert you consult. This will ensure that all of your questions are answered. There are no bad questions!

    See and print out these resources pages:

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    Bring List  PDF
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    Locate Lymphoma Doctors 
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    Big Picture Questions
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    Preparing for Doctor Visits - a checklist
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    Questions for Your Doctor - a checklist
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    Asking questions - by type 
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    Preserving fertility

    Before treatment, consult your doctor about  if becoming a parent is in your plans. You may be able to store sperm or eggs prior to treatment, for example.

     

  • See also our topics on

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    Anxiety and Depression
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    Fertility
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    Treatment for the Elderly 

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    Treatment decisions

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    Monitoring lymphoma

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    Considerations at relapse

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    Clinical trials for me?

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    7 Reasons to Consider Clinical Trials: based on your clinical circumstances

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    Learning about lymphoma and treatments

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    Patient Tools and Tips
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    Support Groups

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    Financial Help topics  such as Drug payment help  and Insurance

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    Evidence-based Support Groups

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    PAL's web-based support forum
    where you can ask questions,
    and receive evidence-based information about lymphoma on a regular basis


     Forum

    Private (not searchable on web)  friendly, evidence-based


     

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    Never give up! Lymphoma can usually be managed, sometimes cured, and ultimately, many experts believe, all types will be curable. Remember that what's safe and effective as therapy for someone else may not work for you, and vice versa.


     

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    Monitoring tumor burden - imaging with CT, MRI and PET

    Try not to get too anxious about modest changes in the size of lymph nodes from one scan to another.

    Many imaging tests cannot accurately distinguish between inflammation, tumor, and residual scar tissue. Your doctor will evaluate the meaning in the context of other indications.

    Also, for indolent lymphoma, the disease can wax and wane, and small changes can occur simply because of differences in techniques and angles used. 

    See Tests and Imaging.

    Ask for a second set of film at the time of the scans. There is usually no additional charge if you tell them before they print them. When you are telling them where the report is to be send, also tell them,

    "I need my own set of scans to take with me to the Univ. of Wherever". They have been most cordial about it. I have all my CT and MRI scans in a closet. Yes, they are bulky and a pain to drag around, but mine are labeled PATIENT'S PERSONAL PROPERTY and I have them when needed. (Tip from Jama Beasely.)

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    Treatment Decisions

    NCCN Guidelines based on Lymphoma Type PDF (requires free registration)
    NCI Evidence-based Best Practices Cancer.gov

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    For Aggressive lymphomas: Aggressive combination treatments are often  recommended and the goal of treatment is often cure.

    See Treatment goals, types, outcomes and agents

    If the diagnosis is Diffuse Large Cell, new tests may soon be available to determine if you have a subtype that is sensitive or resistant to standard treatments.  

    Resources
     
    Diffuse Large Cell lymphoma - Prognosis
     
    Diffuse Large Cell Resource Page  
    Aggressive Lymphomas

     

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    For indolent (slow growing) lymphomas:  
     
    Treatment is often deferred (watch & wait) until you become symptomatic (with symptoms), unless it is localized.  There is no standard treatment.
     

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    Review the Watch & Wait and Treatment Decisions.  

    CAUTION: Be sure to carefully review the protocols with your doctor. Be certain to find out whether the use of the therapy is likely to preclude the use of other important treatments, should you need them.  

    Recommended reading:
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    Experts Articles

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    Identify the latest evidence-based best treatment practices for 
    your particular subtype of lymphoma.  

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    Review options for protecting fertility prior to treatment, if 
    appropriate to your situation.

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    Treatment-specific Questions
     

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    Also consider clinical trials (see below).
      

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    Be prepared to change course
    Prepare alternate plans before the need to use them may occur.
     

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    Treatment decisions - factors that can influence treatment 
    goal, type, and timing

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    Clinical Trials for me?

    Clinical trials can be appropriate  as treatment decisions when they can compare favorably to other studies and available standard therapies – be reasonable treatment decisions for your clinical setting (first line, watch and wait, relapse...).  

    Increasing participation in clinical trials is the only way to make progress against lymphomas and  this need is urgent.  Referrals to appropriate clinical trials are needed and increasingly expected by the patient community.

    Permission from your doctor is not required in order to contact clinical investigators, and you are not being disloyal by doing so. We believe that good doctors will encourage such inquiries and will help you to select appropriate clinical trials.  

    We recommend that you also seek treatment advice from independent lymphoma experts. This helps to ensure objectivity - some investigators may develop unintended biases, or have financial or professional motivations for recommending a particular clinical trial they may be recruiting patients for.  

    Clinical trial types you may consider, based on settings:

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    Alternatives to expectant management (watch & wait):
     
    Agents and protocols with low / reversible / transient toxicity such as immunotherapy, or select targeted agents.

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    First primary therapy:
     
    Head-to-head studies comparing frequently prescribed protocols 
    where there’s genuine uncertainty about which is superior. 
     
    New uses, doses, scheduling of approved agents:
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    Consolidations strategies - following initial therapy with treatment
    that enhances the first (example: augment immunity)

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    Maintenance strategies following standard therapy

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    New agent added to existing effective protocols

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    Sequential therapy
     

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    Refractory disease (not responsive to therapy): 
     
    Single agents with unique mechanisms.
    New combinations of agents with unique mechanisms

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    Relapsed with poor bone marrow function / co morbidities
     
    Targeted agents with low anticipated toxicity 
    Protocols with potential to stabilize progression

    CAUTION: Carefully review the protocols with your doctor. Clinical trials are by definition tests of agents or protocols that have not been fully evaluated or compared to other protocols. 

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    To help ask questions of your doctor, see and print: 
    Is a clinical trial  appropriate for me?.PDF 
     

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    How to inquire about Trials
     

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    7 Reasons to Consider Clinical Trials: based on your clinical circumstances
     

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    Finally, our Clinical Trials Search tools can help you to locate studies.

     

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    Learning about Lymphoma and Treatments

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    Become informed about your type of lymphoma

    It's easier to assess the prescribed course of action if you have a basic understanding of the disease and the pros and cons of basic treatment options.

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    Start with Lymphoma overview

    and the Simplified Explanation of lymphoma.

    It will help you to understand the disease.  

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    The About Cancer and Non-Hodgkin's Lymphoma

    provides more details about lymphoma, including staging and grading.
     

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    The About Lymphoma page is always available for reference.
     

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    Encouraging and informative Patient Stories are provided here.
     

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    The Types of Lymphoma page contains information specific to the many of the subtypes of lymphoma.

    Please contact us immediately if information you are seeking is not found here.
     

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    Become informed about standard and experimental therapies
    so you can better participate in the treatment decision process.  

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    See Treatment Types for an overview of treatment types and goals.

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    See Treatment Overview for many topics related to treatment.  
     

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    Be sure to seek advice from a variety of reputable sources and consider carefully the source and the integrity of the information provider. 
     
    See Evaluating Medical Claims and Data  and 

    Our  Experience with Alternative Medicine

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    When it's Time to Treat

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    Consider first a second expert opinion
    if there is any uncertainty,  or even if not.
     

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    Drug Administration Guidelines  bccancer.bc.ca

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    Learn about the treatment and the expected side effect.
      
    Review
    Treatment Decisions  
     

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    See Treatment Types for an overview of treatment types and goals.
      
    See Side Effects and Cancer treatment support resource pages.
     
    See
    Considerations at relapse - guidelines for patients, by patients. 

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    A doctor's letter to a patient with newly diagnosed cancer http://bit.ly/mjDC5T

    Reader comment: "That was a beautifully written, yet very difficult to read example of a frank, but compassionate communication."

    See also:

    Lymphoma overview - understanding the disease can help to relieve stress, because with knowledge comes the power to make informed decisions.

     

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    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. 
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