By Lisa Machado
No news of a cure but…
There’s something oddly reassuring about sitting in an auditorium full of hematologists. It could be the hope that among these bright minds, someone has news that may once again rock the future of CML – this time not a drug, but a cure. Or maybe it’s the expectation that with so many experts focused on CML, someone is bound to have found solutions to the things that make CML scary, such as mutations, debilitating side effects and drug resistance.
There wasn’t much talk about a cure at the 56th annual meeting of the American Society of Hematology (ASH) in San Francisco. But the premier meeting on blood cancers, which attracts thousands of specialists, did not disappoint. Here are a few things that stood out for me.
Encouraging news about second-generation TKIs: Studies have shown that the second-generation drugs to treat CML help people achieve faster, deeper responses. But the good news comes with a downside. There are concerns about the risks of serious cardiovascular issues, such as peripheral arterial disease.
Team approach to patient care (that doesn’t include a patient): Dr. H. Jean Khoury, from the Winship Cancer Institute in Georgia, described a quite beautiful team approach to CML patient care that included a nurse, pharmacist, social worker, the referring doctor and a hematologist. It’s an innovative model that not only provides the patient with holistic care, but it also improves outcomes. Add the participation of someone living with CML and you just might have the perfect patient care package.
Good news on treatment-free remission: While the tone was a bit cautious about the subject of stopping TKI treatment, you couldn’t help getting just a little excited about study results showing that successful treatment-free remission is becoming a reality for many people with CML.
The patient voice got a bit louder. Dr. Joanne Buzaglo from Cancer Support Community shared information collected through the Cancer Experience Registry. This initiative invites feedback from people with cancer to identify treatment-related issues as well as emotional, psychological and physical concerns. The results have been published in a report, Elevating the Patient Voice (www.cancersupportcommunity.org/MainMenu/ResearchTraining/Elevating-the-Patient-Voice.pdf). The report is based on the comments of more than 7,000 cancer patients who enrolled in the registry.
Dr. Buzaglo discussed the fact that many people wished that they had received more help in managing long-term symptoms and side effects, and dealing with the emotions related to cancer. Not surprising – but what about patients who said that the cost of their cancer meant reducing what they spent on groceries?
The report also looked at specific cancers, and found that a high proportion of people living with CML experience emotional distress, such as anxiety and depression. Other aspects of CML that caused distress included fatigue (“feeling too tired to do what you need/want to do”), muscle aches and cramps, skin problems, memory and concentration difficulties as well as issues with intimacy.
No surprises there either, but it was nice to hear someone else talk about emotional distress for a change. And if someone is talking about it, there’s a good chance that someone is listening. So a change may be on the horizon in terms of how cancer patients are managed. Perhaps we’ll see ourselves move toward a more holistic care structure, one that not only addresses our medical needs, but also our emotional, social and financial needs. (If you’d like to have your voice heard, enroll in the Registry at https://csc.cancerexperienceregistry.org/ and share your cancer journey.)
All in all, ASH didn’t present news of a cure that I was hoping for – but in terms of what the future holds for people living with CML, things look pretty bright.