Empowering Patients to Advocate for Better Care
- If you’re living with chronic myeloid leukemia (CML) or another cancer, use trusted information to have informed, direct conversations with your doctor about your treatment options.
- New therapies may offer better disease control, fewer side effects, and improved quality of life — but you may need to ask about them.
- If side effects are significantly affecting your daily life, speak up. Dose adjustments, supportive care, or switching medications may help.
- Not every solution works for everyone, but advocating for yourself — and even seeking a second opinion — can make a meaningful difference in outcomes and quality of life.
“I think patients should be much more vocal about side effects that they’re having and tell their doctor, no, I’m kind of feeling run down or tired. I’m having some nausea,” says Dr. David Andorsky, medical oncologist and hematologist who specializes in treating blood cancers such as leukemia, lymphoma, and multiple myeloma.
Read MoreImproved Treatment Options For CML
Over the past two decades, the treatment of CML has transformed dramatically. What was once a life-threatening disease–often requiring a stem cell transplant–is now manageable with oral medication. Newly released research continues to build on that progress, offering patients more options, better tolerability, and increasing hope for long-term remission. “Now, we have multiple medications that can be used to help patients live out their normal lives with the disease very well controlled just by taking a pill once or twice a day,” says Dr. Andorsky.A New Approach in CML
Recent research is shedding light on a newer medication called asciminib, an oral treatment for chronic-phase CML that may offer patients another effective option — especially if their first treatment stops working. A recent study of the medication looked at people who needed a second treatment, meaning they had already tried another CML medication before switching to asciminib.
Dr. Andorsky, one of the lead researchers behind the study, says, “[the drug] offers certain advantages from both the tolerability and also potentially effectiveness.”
In this clinical trial, 101 patients were monitored for safety. Only four people stopped taking asciminib because of side effects, and most side effects were mild such as manageable fatigue or minor symptoms that did not seriously interfere with daily life.
After 24 Weeks Of Treatment:
More than 8 out of 10 patients (82.5%) had their leukemia levels drop to a very low amount.
Nearly half (44.4%) achieved what doctors call a major molecular response, meaning the amount of leukemia in the blood became extremely low.
Some patients had their leukemia levels drop even further, reaching very deep responses early in treatment.
Overall, these results suggest that asciminib works well for many patients who need a second treatment and is generally well tolerated.
Most older CML medications work by blocking the same spot on the leukemia protein. Asciminib works differently targeting a different area of that protein. Because of this, it may have a different side effect pattern and can still work in some cases where other medications have stopped being effective due to resistance.
Why Tolerability Matters So Much in CML
As Dr. Andorsky noted, “What’s really changed in the past 15 or 20 years with CML is that we now have six FDA-approved tyrosine kinase inhibitor therapies for use in this disease.” Because these medications are taken daily, often for many years, quality of life and side effects matter tremendously. In the early days of CML treatment, patients had fewer options and often tolerated side effects because alternatives were limited. Now, that is no longer the case.
With multiple effective treatments available, therapies can be individualized. If a patient experiences fatigue, nausea, swelling, or other persistent side effects, switching medications is often possible. Open communication helps ensure that treatment is both effective and sustainable.
Medication adherence exactly as prescribed is critical for achieving and maintaining remission. Side effects can sometimes lead patients to skip doses, either consciously or unconsciously. Having treatment options that are better tolerated supports long-term adherence. As Dr. Andorsky emphasized, “Having a tyrosine kinase inhibitor… that the patient’s tolerating really well is really important for long-term adherence to therapy.” This is why doctors today are more willing to adjust therapy if side effects interfere with daily life.
Treatment-Free Remission
Perhaps the most encouraging development in CML is the possibility of treatment-free remission. With newer agents and deeper molecular responses, more patients are achieving very low or undetectable levels of disease.
Currently, patients who have been on therapy for at least three years, achieve and sustain a deep molecular response, meet additional monitoring criteria may be eligible to stop treatment under close medical supervision. Approximately half of eligible patients can remain off therapy long term without their disease returning. This represents a major shift in goals from simply controlling CML to potentially living without daily medication.
As described by Dr. Andorksy, “with these newer agents, we’re more and more seeing very deep remissions,” creating opportunities for carefully monitored treatment discontinuation.
What These Advances Mean
The fact that conversations now center on quality of life, side-effect management, and treatment-free intervals reflects just how far CML care has come. With multiple effective therapies, improved tolerability, and ongoing clinical trials refining dosing strategies, patients have more options than ever before.
- CML is highly treatable for most patients
- Side effects should be discussed openly, adjustments are possible
- Deep remissions are increasingly achievable
- For some patients, stopping treatment may become a realistic goal
While every patient’s journey is unique, continued advances in research are steadily improving both outcomes and quality of life for people living with CML.
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