By Guillermo Ortí, Department of Haematology, Vall d'Hebron Institute of Oncology, Barcelona, Spain. EBMT Chronic Malignancies Working Party, CML Subcommittee Vice-Chair.
Maaike de Ruijter, Nurse specialist, Department of Haematology, Amsterdam UMC, the Netherlands. EBMT Chronic Malignancies Working Party, Working Party Lead Nurse.
The Chronic Malignancies Working Party of the EBMT (CMWP-EBMT) joins the chronic myeloid leukemia (CML) global community this Sunday 22nd of September, to commemorate the World CML Awareness Day. The therapeutic landscape of CML has evolved across years. With the advent of the tyrosine kinase inhibitors (TKI) more than twenty years ago, the survival of patients diagnosed with CML has substantially increased, being almost comparable to the general population in those patients achieving optimal response. Additionally, because we better understand the potential TKI toxicity, treatment can be adapted according to the patient´s tolerance, which is translated in an improved quality of life over the last years.
There are still challenges to address in patients diagnosed with this disease. In this respect, in patients diagnosed with blast phase CML and in those patients who, unfortunately, do not achieve optimal response after treatment with more than two TKI, allogeneic hematopoietic cell transplant (allo-HCT) remains a therapeutic option with the potential of long-term disease control.
The CMWP-EBMT is actively studying outcomes of CML patients that undergo allo-HCT in a number of haematological disorders. In this respect, over the past two years, the CML subcommittee of the CMWP-EBMT has published different studies that provide insight on the course of CML patients undergoing allo-HCT. These studies focused on investigating the outcomes on the use of alternative allo-HCT donors in CML patients lacking an HLA matched sibling donor, and on the use of post-transplant cyclophosphamide (PTCy) as graft-versus-host disease prophylaxis in allo-HCT from alternate donors and the role of novel TKI after allo-HCT. Additionally, the CML subcommittee is coordinating a survey on management of CML patients post-transplant, as evidence in this setting is limited.
An important part of the CMWP-EBMT is the nurse involvement. Within the Working Party but also to emphasise that nurses have an important role in the treatment of patients.
When patients get the diagnosis CML, it has a huge impact on their daily life. Not only lots of appointments will follow but also for a period or sometimes lifelong treatment with oral medication, most frequently in the form of TKIs. It sounds so easy, ‘just a pill every day and some monthly appointments’. But people often do not realise the impact of the continue need of treatment inherence, the influence that diagnosis and treatment have on daily life like work, family, and social life.
A nurse or nurse practitioner has an important role in the management of the side effects of the treatment, encouraging therapeutic adherence and supporting patient and relatives in processing this diagnosis and impact on their life.
The CMWP-EBMT, as well as other international and national cooperative groups, is actively promoting research aiming to improve the quality of life of CML patients. On the 22nd of September, we want to thank the patients, their relatives, caregivers, and CML advocate groups; and remember that we are altogether committed to improve the lives of those who are diagnosed with this disease.