Chronic myeloid leukemia

Kateřina, 51 years old

  • My disease was diagnosed early
  • I have had a successful bone marrow transplant
  • I am taking modern medicinal products on an outpatient basis
  • I went back to work and sports
  • I do not spend weeks in the hospital

Patients with chronic myeloid leukemia live on average 8 years longer than 10 years ago.

CHRONIC MYELOID LEUKEMIA

In the Czech Republic, 150 to 200 new patients are diagnosed with chronic myeloid leukemia (CML) every year. It is a rare malignant disease that is caused by a disorder of bone marrow stem cells and manifested by the abnormal growth of white blood cells. Healthy bone marrow is gradually pushed out and the decrease in the production of healthy blood cells leads to the collapse of the hematopoietic system.

Chronic myeloid leukemia is caused by a genetic mutation in white blood cells. This mutation leads to uncontrolled white blood cell proliferation (atypical leukocytosis). The main risk factors that can lead to the development of the disease include ionizing radiation, chemical compounds, such as benzene, as well as some drugs, e.g. chemotherapeutics and immunosuppressants, but in most cases the triggering cause is not obvious.

A longer life and more comfortable treatment

The patient's survival time is highly dependent on the phase at which CML is diagnosed. However, treatment significantly and steadily prolongs it in all patient age groups. The disease is usually diagnosed between the ages of 40 and 60. Therapy may include a bone marrow transplant (which, however, is not suitable for all patients) and targeted treatment.

The treatment of patients at the advanced stage of the disease is difficult, but modern treatment makes it possible for people to lead their lives almost without limitation. The percentage of hospitalized patients significantly dropped from 13.9% in 2012 to 7.3% in 2016,” says Mgr. Jakub Dvořáček, MHA, executive director of the Association of Innovative Pharmaceutical Industry (AIFP).

Sickness benefit and disability pension savings

When a certain stage of CML is diagnosed, it is appropriate or even necessary to stop working. Over time, CML stabilizes and the patient may go back to work. Although the number of patients keeps increasing (887 patients in 2016), the percentage of hospitalized patients continues to decline. Also, CML is not increasingly the primary cause of the patient’s death (a decrease by 62% in 2012–2016).

Fewer hospitalizations and fewer disabled patients lead to public savings in the case of this rare disease as well. Between 2009 and 2018, the number of hospitalized patients decreased by 160 and savings amounted to 20.9 million Czech Crowns,” adds Jakub Dvořáček.

THE NUMBER OF HOSPITALIZED PATIENTS HAS SIGNIFICANTLY DECLINED.
While in 2012 it was 13.9% of the total prevalence, in 2016 it was only
0.1%
AVERAGE PROLONGATION OF PATIENTS’ LIFE
 
0years

THE PATIENT ORGANIZATION’S COMMENT

Scientific discoveries concerning the molecular essence of chronic myeloid leukemia have opened up entirely new treatment for patients. Thanks to targeted treatment, their question: “How long will I live with the disease?” has changed to “How much will I be restricted by treatment in my everyday life?” because when diagnosed with CML their physicians give them hope, saying that in spite of the fact that CML is a serious disease, it is now usually treatable.

With the development of several innovative medicinal products, the approach to patients with CML and the choice of medications have become individualized with respect to their age, additional diseases, treatment tolerability and treatment resistance. A chronic condition - continued therapy, even when deep molecular remission has been achieved, has subsequently become a challenge for hematologists improving treatment management (treatment plan, dosing) as well as for patients (treatment compliance). Patients' interest in information from both CML treatment professionals and the lay exchange of experiences among patients has crossed national borders and interlinked the international patient community in the global CML Advocates Network www.cmladvocates.net

Despite the fact that most CML patients are able to live a good quality life and only their medications remind them of their disease and are aware of ongoing clinical trials with other potential therapies, they continue to call for research that would help to truly “cure CML.” Meanwhile, hematologists define the criteria for safe discontinuation of treatment - who, after how long, and how to monitor the disease at a molecular level when treatment is discontinued (remission without the need of therapy). It is a positive vision at least for some patients!

Jana Pelouchová,
Diagnóza leukémie
 

 

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