By Debbie Kerr
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:
Not so fun facts about CML
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 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 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.
Words of Encouragement
Some of the above resources were also used to write this post.
Additional resources for adolescents and young adults (AYA)
Over 30-years of writing experience, over 10 years as a cancer survivor, and a lifetime purveyor of wit and laughter.
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