Cll Watch And Wait Fatigue

Why Do Doctors Recommend Watchful Waiting For Cll

When you hear you or a loved one has cancer, its a natural reaction to want to immediately tackle it with treatment. Often, finding cancer early means you can cure it. However, CLL is different. It is generally very difficult to cure, even if you treat it in the early stages.

Researchers have studied the risks and benefits of early treatment compared to watchful waiting. According to the Leukemia and Lymphoma Society, this research has shown the following:

• There is no benefit to early treatment with current therapies versus watchful waiting in low-risk CLL patients. However, researchers are presently studying the effects of early treatment in CLL patients with a high risk of disease progression.

• Early treatment with standard chemotherapy does not prolong life.

• Early treatment, especially with standard chemotherapy, carries significant risk of side effects and potentially serious complications.

• It is possible to develop resistance to drugs in early treatment that will no longer be useful when CLL becomes progressive.

Basically, these findings mean there are many potential risks with early treatment and no benefit for low-risk patients. However, science is always advancing. This could change as newer therapies become available and clinical trials reveal new data. Your oncologist is the best source for new developments that could benefit your health.

Main Types Of Leukemia

There are four main types of leukemia, which are grouped based on which blood cells they affect and whether they are acute or chronic:

• Acute lymphocytic leukemia
• Chronic lymphocytic leukemia
• Chronic myelogenous leukemia

Rarer forms of leukemia and preleukemic diseases also exist. A subset of the preleukemic disorders progress to AML.

Len Found It Hard To Understand How He Could Have Cancer Yet It Wasnt Making Him Ill And He

EMBED CODE So really the crux of your not understanding is how can you have cancer but it doesnt make you ill?

Watching and waiting could therefore be unsettling and worrying. One man described it as slightly reassuring but odd – like waiting at an airport for a delayed flight. Janet considered it a form of torture and Jane dubbed it whine and worry. Len found that although his consultant repeatedly said to him, Dont worry, just carry on, this was not easy to do. Even when people understood the rationale for watching and waiting they still found the lack of treatment frustrating. Deirdre had initially wanted some treatment but after she had digested what she had been told she realised that the longer she went without treatment the better. Others were glad that they didnt need treatment.

The illness often had no outward sign: people looked and felt the same but knew they had an incurable cancer. Some said this made sympathy hard to come by – they sometimes wanted something to show for their illness.

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What Are The Symptoms Of Fatigue With Cll

The fatigue associated with CLL is different from just feeling tired. When you feel tired, having some quiet time or getting a good nights sleep can help you feel like yourself again. When you have CLL-related fatigue, it doesnt go away so easily.

In general, the fatigue associated with CLL tends to:

• make it difficult or impossible to do what you used to do in a day
• make you feel weak and completely out of energy
• not go away even if you are getting enough sleep
• make it hard to focus on completing a task
• potentially affect your mood and overall sense of well-being

There are several reasons why having CLL can cause major fatigue:

• CLL increases inflammation in the body, which can make you feel extra tired.
• CLL can reduce the number of healthy white blood cells in your body, which are essential to fighting infections. With fewer white blood cells, youre more prone to infections, which take a lot of energy to fight.
• CLL decreases the number of red blood cells in your body. Red blood cells carry oxygen throughout your body, and a lack of oxygen can make you feel short of breath and out of energy.

Treatment is another reason for CLL fatigue.

Chemotherapy is a common treatment to target cancer cells. This treatment also destroys normal healthy cells. The extra energy used to repair normal cells is believed to add to fatigue.

Medications used to treat nausea or pain often cause fatigue and drowsiness.

Key Points For Decision Makers

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How Can I Get The Best Sleep Possible

Sleep doesnt fix this level of fatigue, but a good nights sleep is still important for your health. When you dont get enough sleep, your fatigue will be worse. Sleep also plays an important role in helping your body heal.

Here are some tips for better sleep:

• Have a consistent sleep routine. Do your best to go to bed and wake up around the same time every day.
• Try to limit naps to an hour or less. If you can, avoid napping too late in the day.
• Consider whether caffeine is affecting your sleep. You could switch to decaf coffee and caffeine-free types of tea and soda to see if that makes a difference.
• Have a relaxing bedtime routine. This might include reading or taking a bath.
• Avoid screen time or exercise too close to bed. They can be stimulating and make it harder for your brain and body to settle down.

Monitoring Cll Progression: How Long Can Watch And Wait Last

Chronic lymphocytic leukemia patients want to know how quickly and to what degree their condition will progress. How long do people typically stay in watch and wait? Is there anything CLL patients can do to prevent progression? Watch now to hear CLL experts Dr. Philip Thompson and Dr. Jackie Broadway-Duren, both from The University of Texas MD Anderson Cancer Center, discuss research on factors that influence CLL progression.

This program is sponsored through a grant from AbbVie Inc., Gilead Sciences and TG Therapeutics. These organizations have no editorial control. It is produced solely by Patient Power in partnership with CLL Global Research Foundation.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Thats how youll get care thats most appropriate for you.

Andrew Schorr:

Jackie, how long can this watch and wait period go? I have one friend in Seattle, he’s been in watch and wait for the same 22 years that I’ve undergone treatment. It’s very variable, right?

Dr. Broadway-Duren:

It’s very variable, so it can go on for years, as you stated. So it’s individualized depending on the patient and all the different factors that we discussed and what those are.

Andrew Schorr:

Dr. Thompson:

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How Do I Manage The Fatigue Of Cll

Feeling so tired all the time can make everything more difficult. Here are a few things that may help:

• Be kind to yourself. Your body is dealing with a lot, and it can be hard to accept that you may not be able to do all the things you used to do before CLL. Think about how you would talk to a friend who is dealing with fatigue, and try to show yourself that same level of compassion.
• Prioritize your energy. Consider what things are worth using your limited energy for. Some tasks may be more enjoyable or more worthwhile than others.
• Accept help from others. Remember that people in your life will genuinely want to support you. Make a list so that when someone asks what you need, you can give them a specific task.
• Pace yourself. Plan anything that you really want or need to do for a time of day when you tend to have more energy. Listen to your body and take breaks as needed.
• Consider alternative therapies. Some people find meditation, massage, or yoga can improve focus and energy levels.

Lymphocytic Vs Myelogenous Leukemia

Leukemia is further classified by the type of white blood cell that gives rise to the cancerous cells. Here, too, there are two main categories:

• Lymphocytic Leukemia Lymphocytic leukemia affects the lymphoid cells , which are a type of white blood cell. T cells and B cells make up most of the normal lymphocytes that protect you from infection, and lymphocytic leukemia can be either T or B cell leukemia. The cell type dictates the therapy your doctor suggests.
• Myelogenous Leukemia Myelogenous leukemia affects myeloid cells, which mature into white blood cells , red blood cells, or platelets.

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Treatment For People Without High

There are a number of different ways that CLL can now be treated. For many years people with CLL who do not have high-risk genetic changes have been treated with chemotherapy combined with antibody therapy as their first treatment. This is sometimes called chemo-immunotherapy. While chemo-immunotherapy is often a very effective treatment for CLL, it can cause a range of side effects and complications.

There are now a number of non-chemotherapy approaches to treat CLL. These are targeted drugs that you take as a tablet. They are sometimes combined with antibody therapy. Studies have shown that these newer treatments can be more effective than chemotherapy at keeping CLL in remission. The tablets are also commonly better tolerated than chemotherapy. They include drugs such as ibrutinib, acalabrutinib and venetoclax.

The antibody most commonly used in first-line treatment for CLL is called obinutuzumab. It can sometimes be combined with one of the newer tablet medications.

The different treatments that are approved for CLL within the UK are changing rapidly. As more options become available, it is important that you discuss these choices with your CLL doctor. This will allow you to choose the treatment that is best suited to your needs.

In addition to these options, your medical team might ask you if youd like to take part in a clinical trial. To find out more about clinical trials or to search for a trial that might be suitable for you, visit Lymphoma TrialsLink.

Car T Cell Therapy Enhances The Human Immune Response To Cancer

Youll need to see a specialist to treat your cancer.

A hematologist-oncologist is a doctor who treats people with blood cancers. Pediatric hematologist-oncologists are also available to help babies, children, and adolescents with leukemia.

You can find a blood cancer specialist by asking your primary care physician for a recommendation or by contacting your community cancer center.

Additionally, the Leukemia and Lymphoma Society offers several resources to help you locate a specialist in your area.

You might want to ask the following questions when deciding on a doctor:

• Is the doctor licensed and board-certified?
• Is the doctor a member of any professional societies?
• How much experience does the doctor have in treating your type of leukemia?
• How long will it take to wait for appointments?
• What is the support system like? Will nurses and case managers be available to assist you?
• Whats the best way to contact the physician?
• Will my insurance company cover the treatment I receive under this doctors care?

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How Can I Take Care Of Myself During Watchful Waiting

Watchful waiting can make some people with CLL feel like they cant do anything about their disease. But there are still steps you can take to control your life and maximize your health. Staying healthy can help you tolerate treatment better once its time to start. Consider the following ways to care for yourself during watchful waiting:

• Go to all of your medical appointments, even if youre feeling fine.

• Join a CLL support group with people who are also in watchful waiting.

• Learn about advancements in CLL and its treatment.

• Take an honest look at your lifestyle habits and make changes where necessaryeat healthy, exercise regularly, maintain a healthy weight, get enough sleep, practice stress relief strategies, stop smoking, and limit alcohol consumption.

You can also use this time to find a doctor who is the best match for you. You may already see a hematologist-oncologist with plenty of experience treating CLL. If not, do some research and visit a few doctors. When the time comes to treat CLL, you want to be confident youre getting the best and latest treatments available.

Understanding Your Cll / Sll Genetics

There are many genetic factors that may be involved in your CLL / SLL. Some may have contributed to the development of your disease, and others provide useful information about what the best type of treatment is for you. To find out what genetic factors are involved you will need to have cytogenetic tests done.

Cytogenetic Tests

Cytogenetics tests are done on your blood and biopsies to look for changes in your chromosomes or genes. We usually have 23 pairs of chromosomes, but if you have CLL / SLL your chromosomes may look a little different.

Chromosomes

All of the cells of our body have a nucleus which is where our chromosomes are found. Chromosomes inside cells are long strands of DNA . DNA is the main part of the chromosome that holds the cells instructions and this part is called a gene.

Genes

Genes tell the proteins and cells in your body how to look or act. If there is a change in these chromosomes or genes, your proteins and cells will not work properly and you can develop different diseases. With CLL / SLL these changes can change the way your B-cell lymphocytes develop and grow, causing them to become cancerous.

The three main changes that can happen with CLL / SLL are called a deletion, a translocation and a mutation.

Common mutations in CLL / SLL

If you have a translocation, it means that a small part of two chromosomes chromosome 11 and chromosome 14 for example, swap places with each other. When this happens, its called t.

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Depression Stress Or Anxiety

Many people with cancer also experience depression, anxiety, or high stress levels. Your mental health can affect how the rest of your body feels.

A mental health counselor can be an important part of your healthcare team. They can work with you to develop coping strategies to help you feel your best.

Causes And Risk Factors Of Leukemia

The exact cause of leukemia isnt known, but certain risk factors can up your chances of acquiring the cancer.

Children with Down syndrome are up to 20 times more likely to develop ALL. Other inherited conditions, blood disorders, and even some common viruses may raise a persons risk of leukemia.

Environmental triggers are another probable culprit. Exposure to radiation, chemicals, pesticides, and cigarette smoke are linked to specific types of leukemia. Being treated with certain chemotherapy drugs can also increase your likelihood of later developing leukemia.

While theres no way to completely evade leukemia, avoiding preventable risk factors may help you lower your chances of developing the disease.

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The Chance Of Recurrence

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. Recurrent CLL is CLL that has come back after treatment. While many remissions last for a long time, it is important to talk with your doctor about the possibility of the disease returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the leukemia does return. Learn more about coping with the fear of recurrence.

If there is a recurrence, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above such as chemotherapy and targeted therapy, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat this type of recurrent leukemia. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

How Do Doctors Stage Leukemia

Staging cancer is a way for doctors to identify the extent of the disease. Most cancers are staged by the size and spread of the tumors. Because leukemia occurs in blood cells, its staged differently.

Staging leukemia depends on the type you have, but doctors often consider the following factors when determining the stage and prognosis:

• Your white blood cell or platelet count
• Whether you have a history of blood disorders
• If you have bone damage
• If you have an enlarged spleen or liver
• If you have chromosome mutations or abnormalities
• If youve had chemotherapy for a different cancer in the past.

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What Are Some Strategies For Staying Active During Cll Watch And Wait

Jay Blatt: I didn’t get officially until 2016. And when I did get diagnosed, I decided that I was going to try and do whatever I could do as far as adopting a healthy lifestyle to try and lower the impact of my disease. So, I’m a big exercise fanatic. I’ve seen my fatigue, which was horrible, I couldn’t even walk around the block, totally go away. And you know, what works for one person won’t necessarily work for everybody, but it will work for a major percentage of the people who try it.

So, exercise. I’ve become a macrobiotic nutritional counselor. I’ve been studying for five years. And all of these things exercise, supplementing, having a positive attitude, just living life and doing whatever we can to support the great efforts of our CLL specialists it will culminate, and people will get healthier and they’ll feel less anxious. And that’s what I do.

Esther Schorr: That’s great Jay, and appreciate that insight.