tips and tricks for living with cML

Written by Dr.Bayat
Associate Professor of Orthopedic expert,Brigham Hostpital

Chronic Myeloid Leukemia (CML or C.M.L) covers about 20% of all leukemias which are cancers of blood-forming tissues, including bone marrow. While it was a deadly disease in the past, with recent discoveries in its treatment, the leukemia has shifted from a progressive and fatal cancer to a cancer in which ninety percent of patients with stable conditions live for up to five years after diagnosis. This has become possible with the introduction of a medication named Gleevec or Imatinib which has really changed the survival rate of patients suffering from CML.

In this article, we will go over some tips and tricks which will help you to live better and longer with CML.



tips and tricks for living with Cml


 CML and life expectancy

The nature of CML or Chronic Myeloid Leukemia is such that after its chronic period, it enters the acute and so-called blast phase. In this phase, the number of platelets will decrease and anemia (a condition in which the blood is missing enough number of healthy red blood cells) will occur.  More importantly, we will see a significant reduction in the number of white blood cells defending the body. Due to their weaker immune system, CML patients in acute phase are constantly threatened by bleeding and infections.

Fortunately, with the invention of the new drug Gleevec, about ninety percent of patients with CML can remain in the chronic and stable phase for years and do not enter the acute, progressive and fatal phase.


 What will life be like with CML?

With the diagnosis of the CML, the patient may panic and start experiencing fear and anxiety. Worrying thoughts, mood swings, etc. are also very common among patients with chronic diseases. It should be noted that depression and anxiety disorders can affect the lifestyle of people with CML, and therefore helping them to maintain their mental health can considerably improve their physical condition. Other than mental problems and side effects of the drugs used to treat CML, there will be no other big changes in patient’s life as long as the disease stays in chronic and stable phase.

Note that there is no risk factor associated with CML that you can avoid to reduce the risk of getting this fatal disease. Perhaps, you may just want to stay away from getting exposed to high doses of harmful radioactive radiations.

You should also understand that going through the treatment phase of CML will affect the life of the patient. Unfortunately, most of the problems and issues associated with this disease or its treatment will not be within patient’s control, but there are things that the patient can do to have a longer and happier life as explained below.


Tips and tricks for living with CML:

To live as normal as possible, patients suffering from CML may consider following the tips and tricks explained in this section. These tips and suggestions can be categorized into three groups:

  • Managing and handling side effects of CML treatments

  • Management of psychological problems associated with CML or its treatment

  • General consideration


Managing and handling side effects of CML treatments

One of the most important and effective drugs used for the treatment of CML is an enzyme inhibitor called tyrosine kinase, or TKI (Tyrosine Kinase Inhibitor) for short. These drugs can keep your disease stable and under control for years.

Unfortunately, despite the great effects that these drugs have on CML, they have some adverse side effects that may compromise the long-term use of these drugs in CML patients.

Proper control and management of these side effects plays a critical role in living as normal as possible with CML.


Side effects of TKI drugs:

TKI drugs are associated with the following side effects:


Tips and tricks for living with CML


How to deal with these complications?

Here are some tips and tricks to deal with each of these complications and side effects:


Nausea is a very common side effect that almost every chemotherapy drug has to some extent.

To control the annoying feeling of nausea, your doctor may have given you a special medicine. Make sure to take that medicine and, in addition, get help from the following methods:

  • Eat ginger. Note that your daily intake should not exceed one tablespoon of powdered ginger.
  • You can pour ginger into your tea and drink it.
  • Deep inhaling and exhaling help you fight nausea.


Get enough sleep if you have sleep problems and if the quality of your sleep is not good, inform your treatment team. Remember that maintaining a balance between physical activity and rest is essential to overcome fatigue.

Feel comfortable seeking help from friends, children, and family to make things easier for yourself.

An important point that the CML patient with fatigue side effect should remember is that fatigue can be a sign of depression and psychological problem beside the side effects of medication used to control the disease. Be sure to see your doctor in case your fatigue and weakness do not respond properly to common treatments.


In order to control your diarrhea, use some of these methods:

  • Do not eat spicy foods.
  • Use probiotic supplements under your doctor's supervision.
  • If experiencing severe diarrhea or see blood in your stool, consult with your doctor immediately.
  • Substitute fast foods, canned foods, prepared and processed foods with fresh and healthy foods with balanced nutrition.


Management of psychological problems:

Managing psychological problems and side effects that are associated with CML and generally any other cancers are very important in having better and more effective treatment. Consider following the below tips and tricks in order to overcome these problems:


1) Write down your daily symptoms

You can write down your daily symptoms on a piece of paper. For example, write down whenever you have more symptoms during the day and when you are more bothered by what side effects. These notes will make you more aware of the side effects and the time they are happening so you can manage them more easily.

For example, if your diaries show that every day you feel tired around four o'clock in the afternoon, from now on, you may consider not doing anything in those hours and rest more instead.


2) Consult with your doctor more frequently

Be sure to tell your doctor if you experience excessive side effects. Your doctor may reduce the dose of your medication or replace it with alternative choices.


3) Use financial support if needed

One of the things that can affect the mental health of the patients is the high medication costs. With the right health insurance, you can eliminate this source of worry and anxiety. If you are paying from your own pocket, be sure to ask your doctor in advance about the cost of medications, so you do not have to spend extravagant expenses later. You doctor may also consider using some alternative but cheaper treatments.


4) Talk about your problem

Talking about what makes you feel uncomfortable or depressed will help you to accept the situation faster and overcome the problem easier.

If necessary, tell your boss about your health status and your illness so that he or she can adjust your work type and work schedule and allow you to leave the workplace earlier than others if needed.


5) Get support from your family

Receiving emotional support from your family is essential to get you through the difficult moments of your illness. They also can help you with your daily jobs and activities.

Have an honest discussion with your partner or your spouse about your situation and explain to them that you may not be sexually active like before. However, always be sure to use contraception anyway.


6) Eat healthy food

  • Substitute fast foods, canned foods, prepared and processed foods with healthy and fresh foods containing balanced nutrition
  • Eat a lot of foods containing omega-3 such as salmon, nuts, whole grains, olives and avocados.
  • Limit the consumption amount of red meat, butter, and foods high in sugar and salt
  • Quit smoking
  • Stop drinking alcoholic beverages

 Note that the consumption of pomegranate and grapefruit is forbidden because they will have many interactions with your drugs.


7) Stay as active as you can

Be sure to continue your regular physical activity. It is best to have at least 2 to 3 hours of regular exercise throughout the week, including walking, jogging and cycling. Maintaining regular physical activity has the following benefits:

  • Boosting energy
  • Improves your mood
  • Improves your strength
  • Reduces the anxiety and stress
  • Strengthen your immune system


Written by Dr.Bayat
Associate Professor of Orthopedic expert,Brigham Hostpital



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