Living with CML: From diagnosis to treatment-free remission

Megan Sader knew there was something wrong when she tried to make a donation at a blood bank six years ago.

The process, which had always been routine, did not go as planned. “They couldn’t get my blood into the tubes because it was so thick,” says Sader, an early childhood educator who was just 44 at the time. “When they tested it, it was full of white blood cells.”

Those follow-up tests, which included a painful bone marrow aspirate, led to an official diagnosis of chronic myelogenous leukemia in February 2019. Other than some minor weight loss, which was normal for Sader during stressful periods of her life, there was no warning that she was about to enter some of the darkest days of her life.

Surviving the symptoms

The initial treatment plan she was given included Imatinib and hydroxyurea but the combination of the two drugs quickly wreaked havoc on her system. “I was so sick,” she says. “I had a constant fever and developed a rash from head to toe. I was just in pain and crying every day — it was horrible.”

The psychological symptoms were almost as bad. As the mother of four children, Sader admits she hadn’t been taking the best care of herself at the time. She was in the early stages of menopause and the drugs seemed to accelerate the process. She was exhausted and found it increasingly difficult to see the light at the end of the tunnel.

“I didn’t feel like I had my body anymore,” she says. “It felt like I was living in this damaged body that wasn’t me. I remember, at one point in time, I just gave up. I was like, ‘If this is how things are now, I’m just going to live in my sorrow.’ I didn’t handle it very well.”

A ray of hope

After about four months of torture, Sader’s doctors prescribed a new drug that worked much better for her. The symptoms that had made her life miserable slowly went away, allowing her to start focusing on the future. Over time, she learned more about CML and discovered that some patients were able to stop treatment altogether if their doctors determined they had achieved a deep enough molecular response to their medication.

After years of feeling pushed around by her disease, the possibility of treatment-free remission (TFR) gave Sader the motivation she needed to start pushing back. “I convinced myself it was going to happen for me and began working toward that,” she says. “I started taking better care of my body and doing things that helped me heal, physically and mentally. It literally took four years of having cancer to finally decide to take care of myself.”

Leaving the drugs behind

All her hard work paid off and, after getting the green light from her doctors, Sader stopped taking her CML medication in June. She gets her blood tested every month to ensure the process is working and she does not need to restart treatment. If she makes it to the one-year mark without issue, those tests will decrease to every three months.

“My CML numbers have either been undetected or just barely above detected, which is where they want you,” she says. “I feel like I’ve got myself back — my mind and my body — after getting off those drugs. I feel like they gave me a bit of brain fog, and definitely other symptoms.”

Even though she’s in a much better place now, Sader is at peace with the fact she may have to return to her medication if she is unable to maintain her molecular response without treatment. “We’re very lucky to be living when we are because none of this was an option before the ’80s,” she says. “Back then, within three to five years you would likely be gone from leukemia. Just knowing there are drugs that will keep you alive softens the blow a bit but the drugs themselves aren’t exactly easy to take.”

For anyone else just starting their CML journey, Sader recommends trusting your gut when it tells you something is wrong and learning to be your own advocate when you talk to someone with the answers you need. “Listen to your body and trust your instincts,” she says. “And talk to your doctors instead of searching Google and panicking.”

She encourages others to hold on to hope in the face of what can be a very difficult day in the doctor’s office. “When you get diagnosed with CML, it’s so scary because you don’t hear that there’s a pill that can help you live a normal life. All you hear is the word ‘cancer’ and your brain starts to shut down. It can feel safe to feel that way but there’s also safety in knowing you’ll get better as well.”

Now 50, Sader enjoys the sense of contentment that comes with having survived some of the more daunting challenges of life. She still works as an early childhood educator but spends most of her free time mountain biking through the endless trails in Campbell River, B.C., or singing along as her husband plays their favourite ’90s hits on his guitar.

“I’m much more chill now,” she says. “I’ve been through this and I’ve been through that and I feel good. I’m excited to be in TFR now — and hopefully forever.”