Living with CLL

Talking About Your Diagnosis

Talking about a cancer diagnosis with your friends and loved ones can be hard, but remember: they want to help you get through this difficult time.

Below are a few tips to help you feel more comfortable speaking about CLL.

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Coping with “Watch and Wait”

Unlike other cancers, many people living with CLL do not need immediate treatment. In fact, some people with CLL may never require medical treatment and can continue to live a healthy life for many years. Instead, doctors regularly monitor them until symptoms appear or change and treatment is necessary – this approach is called “watch and wait.” You may also hear this referred to as “watchful waiting” or “observation.”

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The Role of the CLL Patient

In addition to the care provided by your doctor, it is important to take an active role in your health and take steps to manage your CLL. Below are a few ways you can take control of your care:

  • Doctors’ appointments can be stressful and you may not remember all of the questions you want to ask. Prepare for your appointments by making a list of questions to discuss – here is a list of sample questions to get you started.
  • If something is unclear to you, ask your doctor to explain it further.
  • If you feel as though you don’t have enough time to speak with your doctor, ask to meet with a nurse who can spend extra time answering questions and explaining information.
  • Ask a family member or friend to come with you to appointments to help remember important information and to support you.
  • Seek help from your local community cancer organization if you have trouble getting to and from your treatments. The Canadian Cancer Society, for example, offers a service called Wheels of Hope that can help.
  • Educate yourself on CLL and the treatments available.
  • Learn how to understand your blood counts as these give important clues about the state of your health before, during, and after treatment – here is a resource that can help you.
  • Continue to take an active role in your health, even after your treatment has stopped. For more information on the off-treatment phase, visit LifeBeyondLymphoma.ca.

When to Call Your Health Care Provider

It is important to closely monitor your health for any changes. Your health care team may have discussed side effects of treatment with you, but if you suddenly become unwell, or experience any of the following, call your head nurse or doctor.

  • Recurrent, unusual bleeding (e.g. nosebleed that cannot stop, blood spots under the skin, bruising, blood in your urine)
  • Dizziness or light-headedness
  • Stools that are black and tar-like, or have streaks of blood
  • Dehydration (e.g. sunken eyes, dry mouth, passing only a little dark urine)
  • Inability to keep food/fluids down
  • Severe diarrhea
  • Extremely low energy levels
  • Feel sad, hopeless or overwhelmed
  • Unexplained weight loss or gain
  • Fevers for no reason (an oral temperature 100.5 or greater)
  • Infections that won’t go away with antibiotics
  • Drenching night sweats
  • Painful or swollen abdomen
  • Bumps under the skin that are growing quickly
  • Extremely low energy levels

My CLL Compass Quiz

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