CLL Whole Patient Support Archives

Cancer can unleash a whirlwind of unexpected emotions and experiences for CLL patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for CLL Whole Patient Support from Patient Empowerment Network.

Nervous About a Second Opinion? How to Confront Your Fears

/in , , , , , , , , , , , , /by

Nervous About A Second Opinion? How to Confront Your Fears. from Patient Empowerment Network on Vimeo. 

Chronic lymphocytic leukemia (CLL) patients may be hesitant to ask for a second opinion to help guide their care and treatment choices. Dr. Brian Koffman shares his advice for confronting fears and becoming a confident self-advocate. Need help speaking up? Download the Find Your Voice Resource Guide here.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

See More From The Pro-Active CLL Patient Toolkit

Related Resources

 

How Can Patients Advocate for Genetic Testing

  

Expert Advice for Newly Diagnosed CLL Patients

  

CLL Office Visit Planner

Transcript:

Dr. Koffman:   

It’s a relatively rare cancer, and most hematologists and oncologists are busy taking care of the more common cancers, like breast, colon, prostate, or lung cancer.

So, they don’t really have a lot of experience compared to a CLL expert who only sees CLL patients, or more than half their practice is CLL patients, in terms of taking care of those patients. There are roughly 20,000 hematologist/oncologists in the USA, and there are roughly 20,000 new patients diagnosed with CLL a year, so if you do the math, you can figure out a community hematologist might be seeing one new CLL patient every year.

So, you wouldn’t see a surgeon who does one hernia repair a year, you’d see one who does many every week. So – and, it’s not just that these people have more experience. There’s research that shows that there’s a survival benefit to seeing a CLL expert, and people live roughly two years longer – based on some old research – by just having an expert as part of their team.

Above and beyond that, CLL is being revolutionized in how it’s being treated, and there’s all kinds of new therapy, and what the best treatment today will be upstaged by a better treatment next month, perhaps. So, unless you’re really focused on CLL, you’re not gonna be aware of what the latest data, what the latest research is, so it’s critically important because they’re on top of what the latest research is, they’re on top of what the latest clinical trials are, they’re on top of the best way to use the new medications that are available, and they provide you with significant survival advantage and management of some of the potential complications with CLL.

So, some people are concerned about getting a second opinion because they’re worried that it might portray to their doctor that they don’t have trust in their judgement or that they’re not happy with the care that they’re getting. Well, as a retired physician, let me assure you that most doctors are very thick-skinned, and we generally welcome people getting another opinion – a second opinion – and medicine is collaborative, and so, most doctors aren’t hesitant about you doing that, and welcome that. Bluntly, if you have a doctor who doesn’t want you to get a second opinion, that would be, for me, a real urgency to get a second opinion.

If hesitant or nervous about getting a second opinion, what I would encourage you to do is think hard about what – whose skin is in this game. Who is the person who has the disease? Who is the person that’s gonna benefit from getting that extra information? So, what is the worst that could happen? The worst that could happen is that you could see the expert, get an opinion that’s identical to your own physician’s, and that just inspires confidence in what’s going on.

The other thing that could happen is there might be an alternative that’s more attractive – less toxic, more effective – and wouldn’t you kick yourself if you hadn’t taken that chance and pursued getting that extra information? So, it’s – every medical decision should be a shared medical decision, and it’s all right as patients to ask for that second opinion and just…not to be hesitant about doing it.

Really, again, it’s rare that a doctor is gonna object to you doing that, and if your doctor objects, then I think you’ve gotta look at what that means, and especially in view of the data, there’s a survival advantage to getting a second opinion.

The Restorative Power of Music

/in , , , , , , , , , , /by

Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.

Music Therapy and Mental Illness

One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.

Follow the Music

A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety.  There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.

The Results

Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.

Beyond the Study

Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.

MedHelp

/in , , , , , , , , , , , , , , , , , /by

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

How To Cope With Cancer-Related Fatigue

/in , , , , , , , , , , , , , , , , , , , , , /by

We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.

What is cancer-related fatigue?

Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life.  It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment.  Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.

Some symptoms of cancer-related fatigue, according to the American Cancer Society are:

  • A constant feeling of tiredness that doesn’t ever go away or get better
  • Being more tired than usual before, during, or after activities
  • Feeling too tired to perform normal routine tasks
  • Feeling general weakness or lethargy
  • Lacking energy
  • Being tired even after a good night’s sleep
  • Inability to concentrate or focus
  • Inability to remember
  • Being sad, irritable or depressed
  • Easily frustrated or angered
  • Trouble sleeping/insomnia
  • Difficulty moving arms or legs

What medical help is available for cancer-related fatigue?

A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.

Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.  For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.

6 Everyday Strategies To Cope With CRF

 

Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.

1. Make deposits in your ‘energy bank’

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

2. Plan your day

Planning is key when you have fatigue.  Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day.  By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.

3. Keep a fatigue diary

Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day.    This can make it easier to plan your activities for the times when you have more energy.

4. Do some regular light exercise

Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.

5. Eat healthily

When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further.  Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.

6. Adjust your work schedule

Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home.  Ask colleagues to help you with some of your work.  Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.

Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.