Non-Hodgkin’s Lymphoma Archives

Non-Hodgkin’s lymphoma is a cancer that starts in cells called lymphocytes, which are part of the body’s immune system. Lymphocytes are in the lymph nodes and other lymphoid tissues (such as the spleen and bone marrow).

More resources for Non-Hodgkin Lymphoma (NHL) from Patient Empowerment Network.

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)   

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm 

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Complete Guide To Mindfulness

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. https://betterrelaxation.com

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Overcoming Challenges and Choosing the Best Treatment

This podcast was originally published on City of Hope Radio here.


Cutaneous T cell lymphomas are types of non-Hodgkin lymphoma that arise when infection-fighting white blood cells in the lymphatic system – called lymphocytes – become malignant and affect the skin.

Lymphomas are cancers of the lymphoid system and usually arise in lymph nodes.

However, with skin being the largest lymphoid organ in the body and our first line of defense against the outside environment, occasionally it becomes the site of lymphoma formation.

Listen in as Jasmine Zain, MD talks about T cell lymphomas, along with the best prevention and treatments.

Interview With Two-Time Cancer Survivor Howard Brown

This podcast was originally published on WE Have Cancer on July 15, 2019 by Lee Silverstein here.


 


Howard Brown was first diagnosed with cancer – Non-Hodgkins Lymphoma – at the age of 24. When he turned 50, a routine colonoscopy revealed stage 3 colon cancer.During our conversation we discussed:

  • The numerous treatments, including HIPEC, and clinical trials he’s been through.
  • His experience as an an attendee of the 2019 American Association of Cancer Research (AACR) conference.
  • How his twin sister saved his life from stage 4 Non-Hodgkins Lymphoma.
  • The possible link between childhood and young adult cancers to adult cancers.
  • His experience being treated with Hyperthermic Intraperitoneal Chemotherapy (HIPEC)
  • What his cancer experience has taught him about himself.
  • How exercise has helped him physically and emotionally.
  • His thoughts, and mine, on healthy eating.

Links Mentioned In the Show

Stacy Hurt – https://stacyhurt.net/

AACR – https://www.aacr.org/Pages/Home.aspx

Gentle Yoga With Jean DiCarlo Wagner – https://Wehavecancershow.com/019

Colontown – https://colontown.org/colontown-intake-form/

Belong.Life App – https://belong.life/

WE Have Cancer Links

Subscribe to the show – https://pod.link/wehavecancer

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Clinical Trial Toolkit

After Cancer, Ambushed By Depression

At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?

Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”

Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.

What Causes Depression?

Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness.  However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.

In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.

Incidence of Depression in Cancer Survivors

Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life   event like cancer have an increased risk of depression that can persist for many years.  While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.

The Challenge of Identifying Depression in Cancer Patients

Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients.  This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.

Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.

Are You At Risk of Depression?

Depression can occur through a combination of factors, with some of us being more prone to depression than others.  Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.

Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.

Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.

Try answering the following two questions.

Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?

If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.

Depression Checklist*

(Tick each of the symptoms that apply to you)

  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • On-going sad or “empty” mood for most of the day
  • Finding it hard to concentrate or make decisions
  • Feeling restless and agitated, irritable or impatient
  • Extreme tiredness and lethargy
  • Feeling emotionally empty or numb
  • Not eating properly; losing or putting on weight
  • Loss of interest or pleasure in almost all activities most of the time
  • Crying a lot
  • Losing interest in your sex life
  • Preoccupied with negative thoughts
  • Distancing yourself from others
  • Feeling pessimistic about the future
  • Anger, irritability, and impatience

Add up the number of ticks for your total score: _______

What does your score mean?

  • 4 or less: You are unlikely to be experiencing a depressive illness
  • 5 or more: It is likely that you may be experiencing a depressive illness.

NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.

Depression – The Way Forward

It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.

The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there.  Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression.  There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.

The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.

A Note on Helping a Loved One with Depression

Perhaps you are reading this because you’re concerned about a loved one who might have depression.   You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.

The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.


*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.

How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Care Coordination Means Everyone Is Working Together

 

 

 

 


You Are Your Own Best Advocate

 

 

 

 

 

 

 


Work For What You Deserve

 

 

 

 


Full Chat

Access To Healthcare As A Human Right

One of the keys to health literacy is understanding your role, as a patient, in the care delivery process chain: learning what you need to know to ask questions that can help clarify decisions with your clinical team; how to assess the information you’re given to understand what you need to do, or to consider, as next steps in your treatment journey; who to consult for expert input and guidance to fact-check, and gut-check, the information you’re processing and the decisions you’re making.

It’s a lot, particularly when you’re dealing with the impact of what I (and Firesign Theater) like to call “a really big disease.” It’s even more – way beyond “a lot” – if you have to also fight for the right to access treatment for your diagnosis.

This may seem like a problem that belongs to someone in a developing country, not one that happens in the USA, but that’s not the case, far too often. In America, a person given a diagnosis of cancer, or of Parkinson’s disease, or any other “really big” condition, not only has to navigate learning all about that condition, but also has to figure out how to pay for the treatment for it.

In a recent survey from West Health and Gallup, some alarming stats surfaced about Americans and access to medical care:

  • 45% of people surveyed feared bankruptcy if they had a major health event (“really big disease” or accident)
  • 77% feared that rising costs will significantly damage the U.S. economy
  • More than 3 million people borrowed more than $10,000 to cover medical expenses in the past year

Which brings me to my main point here – access to medical care is, I believe, a basic human right. If the system that’s providing your care has been priced out of your reach, and you wind up bankrupting yourself, and your family, to access care, is that really “care,” or a symptom of a broken system?

Sure, the doctors and nurses, as well as the hospitals and clinics where they work, deserve to be compensated for their work. I’m not suggesting that medical care be free. What I am suggesting is that, in the US at least, the goal of the “system” has been to protect the status quo – the revenue stream, which at last official count (2017, from the US Centers for Medicare and Medicaid Services) was $3.5 trillion, of which about $1 trillion is estimated to be waste. Does that sound like a healthcare system, or a RICO scheme? Asking for millions of friends.

Until we, as a nation, confront this issue of access to medical care, and the inequity of access caused by the “chaos behind a veil of secrecy” that marks the pricing of that access, we’ll be stuck in the loop we’ve been in since the end of WWII, when Harry Truman tried to initiate a national healthcare program and got beaten up on the White House lawn by Congress, and the American Medical Association.

America is founded on the idea that every person has a right to “life, liberty, and the pursuit of happiness.” It’s hard to have life, or liberty, or happiness without access to healthcare. Let’s live up to our founding principles, and guarantee healthcare access to all. Anything less, and we’re betraying the American promise.

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources.