So much to learn about...Blood Cancers

By Debbie Kerr

September is Blood Cancer Awareness month, so the purpose of this post is to raise awareness and provide an overview of blood cancers...with a little more detail (including personal stories) about Chronic Myeloid Leukemia (CML). This post is not meant to replace information that a medical professional can provide. ​

What is a blood cancer?
Blood cancer is an umbrella term for cancers that affect red blood cells, white blood cells, platelets, and plasma. Most blood cancers start in the bone marrow, where blood cells start to grow out of control and produce abnormal blood cells. The more abnormal cells grow, the harder it is for the remaining healthy cells to fight infection and produce normal blood cells. There are over 130 different blood cancers and related disorders. The three main types of blood cancers are lymphoma, myeloma/multiple myeloma, and leukemia. 

There are two sections that follow. One section applies to leukemia, particularly CML. The second section applies to all blood cancers (Lessons Learned, Words of Encouragement, and Resources). 

Details about Leukemia (particularly CML)
There are four main types of leukemia:

• Acute Lymphoblastic Leukemia (ALL)
• Acute Myeloid Leukemia (AML)
• Chronic Lymphocytic Leukemia (CLL)
• Chronic Myeloid Leukemia (CML)

Not so fun facts about CML​

• CML is considered chronic because it progresses slowly.
• 90% of people diagnosed with CML have an identifiable gene mutation that occurs after birth. Normally, the ABL gene is on Chromosome 9 and the BCR gene is on Chromosome 22; however, with CML, parts of these chromosomes break and exchange parts so the genes that were previously on separate chromosomes are now both on Chromosome 22 (BCR-ABL).
• The mutated Chromosome 22 is referred to as the Philadelphia chromosome (Ph+).
• Patients who are Ph+ have more targeted and effective treatments than patients who are not.
• CML is not given a stage but is assigned one of three phases: chronic, accelerated, and blast. A patient’s phase is based on the percent of abnormal blood cells (also known as blasts) and the severity of a patient’s symptoms. Most patients are diagnosed with CML when its in the chronic phase when there is little to no symptoms. The blast phase (also called blast crisis) occurs when the percentage of abnormal cells causes life-threatening symptoms like bleeding and infection.
• Because the chromosomes involved in the mutation are 9 and 22, CML Awareness Day is September 22.

Michelle’s Story
Michelle lives in Alberta. She is a wife and a mother of two children. In fact, it was her daughter’s grade 11 biology project that led to Michelle’s CML diagnosis. 

Michelle’s daughter wanted to get her blood work done, make lifestyle changes, and then have her blood work done again to see how much it had improved. The doctor agreed to this but suggested that an adult be included in the project, since the change would be more obvious. With that, Michelle also became part of the project.

After the Friday visit to the doctor, while other people went Christmas shopping, Michelle and her daughter went for blood work on Saturday morning. Approximately two hours later, Michelle’s doctor contacted her to tell her that her White Blood Cell count (WCB) was too high, and she had an enlarged spleen. On December 20th, Michelle had a bone marrow biopsy and it confirmed she had CML.

She started treatment shortly after that.  Luckily, using a drug that was discovered in early 2000, she responded well and her CML was considered under control and stable within three months. Michelle also knew from her research that without the discovery of that medication, she would have been given three years to live.

Currently Michelle has been treatment free for three years; however, she continues to be monitored with blood work every three months. Not everyone with CML will achieve this status. Certain criteria must be met before being treatment free is an option.

Melany’s Story
Melany lives in British Columbia and was diagnosed in September 2020 with CML when she was just 26. Before her diagnosis, she felt very tired and dizzy. She had headaches and even passed out. While normally a very active person, she had trouble healing and her vision intermittently blurred. Since she had iron deficiencies in the past, she thought that was the problem. Finally, when the symptoms persisted, she went for blood work and found out her platelet counts were too high, but her white blood cell count (WBC) was normal. For many people with CML, it’s their WBC counts that are abnormal.
 
Melany sees having so many symptoms as a blessing because it allowed her CML to be diagnosed early. She was also grateful that her hematologist (doctor who specializes in blood, bone marrow, and the lymphatic system) was a people person who listened and was easy to talk to.  

While her doctor was pleasant, the side effects to treatment were not. Melany felt nauseated, threw up, had diarrhea, had very long and heavy periods, felt weak, felt extremely tired... and the list goes on. After 10 months, Melany decided it was time to talk to her doctor and advocate for a medication change. The doctor agreed and, in July 2021, she started a new medication that had fewer and more tolerable side effects.

Melany also recognized that she needed help with her mental health, so she saw a psychiatrist and a counsellor for assistance. Now, in a better place physically and mentally, Melany’s CML has reached a major molecular response (MMR) status, which means that the amount of the BCR-ABL gene in her blood or bone marrow is 1/1000th (or less) of what's expected in someone with untreated CML.

Debbie’s Story
Debbie lives in Manitoba and was diagnosed with CML when she was 45. Like many people who are diagnosed with CML, she found out she had a high WBC count when she went for routine blood work. To complicate matters, Debbie had other health issues, including Crohn’s disease, so her primary health care physician contacted her specialist to see if there could be a connection. After more blood work, Crohn’s disease was ruled out as the cause for Debbie’s high WBC count, and she was sent to see an oncologist, who ultimately diagnosed CML.

To treat her CML, Debbie took her initial medication for 3.5 years; however, for the first three months of taking that medication, she was in bed because she was exhausted. It took another three months to return to full-time work (with fluctuations based on how she felt). Eventually, Debbie’s doctor switched her to another medication and, after 2.5 years (a total of six years since diagnosis), Debbie received the news she wanted.  At her July 2023 appointment, her doctor told her that her CML was no longer detectable. That does not mean she is cured. She must continue taking her medication to remain in remission. Currently, Debbie is dealing with fatigue and is working part-time.

For all blood cancers
Michelle, Melany, and Debbie had the following words of advice and encouragement for people with CML, but they really apply to ALL blood cancers.

Lessons Learned​

• Listen to your body because you are your body's voice. Make sure your doctor listens to you and advocate for yourself. 
• Start a journal and record (or have someone else record) details about your doctor visits, symptoms, treatments, and side effects. Having everything documented makes it easier to see when changes need to be made, promotes more thorough explanations from doctors, and makes information readily available when advocating for yourself.  
• Getting back to “normal” can be just as hard as receiving the diagnosis and undergoing treatments. Even with treatment, you will not always feel OK.
• Young people can get cancer.
• A bone marrow transplant is only needed if medications don’t work.
• Some expenses associated with your diagnosis and treatments may be tax deductible. For a list of required information, talk to a tax specialist or check the Canada Revenue Agency website and search for “medical expenses” or, in the U.S.A., go to the IRS website. 

Words of Encouragement

• Take the time you need to process everything. It’s okay to feel scared and shocked. Take care of yourself and accept help when needed. 
• You are not alone. There are others who are going through the same things.
• Right now CML might be all you think about, but there will come a time when it will be a part of your life that you don't think about as often.
• Reach out to resources available to you. Human contact can be the biggest help with getting to know more about CML. It’s one thing to read about CML and another to hear real-life stories.

Resources

•  The Canadian CML Network  - cmlnetwork.ca
  Each of the people interviewed for this post mentioned this site as a resource. In addition to Canada, this site also includes resources for the U.S.A and international locations.
• Canadian Cancer Society – cancer.ca
  In addition to information about many types of cancer, including blood cancers, there is also a Community Services Locator so you can look for services in your area.
• Leukemia and Lymphoma Society of Canada – bloodcancers.ca
• Leukemia and Lymphoma Society (American site) – lls.org
  There is a vast array of information including podcasts.

Some of the above resources were also used to write this post. 

Additional resources for adolescents and young adults (AYA)​

• Callanish Society (Vancouver)
  They offer young adult support circles, retreats, and other programs both in person and virtually.
• Elephants and Tea
  This site is specifically for adolescents and young adults as patients, survivors, and caregivers.