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J.Andziulis felt health problems in 2015: weakness, dizziness appeared, he had to sit down, it was even difficult for him to tie his shoelaces. After the tests, the family doctor noticed an increase in the level of protein in the blood, so the patient was sent to consult various specialists.
“I came to Kaunas, where a diagnosis of Waldenstrem macroglobulinemia was made. She started the treatment, she chose the medication. I received 6 cycles of chemotherapy, after which I felt better, my blood count improved. I felt cured, I went back to work.” recalled J. Andziulis.
But after a few years, the symptoms of the disease reappeared: headache and dizziness, tiredness from weakness. J.Andziulis was sent for a consultation to Vilnius, where since 2019 he continues the treatment. The Marijampole resident initially took pills and then received chemotherapy again.
“I already had 4, 2 more courses of chemotherapy. Difficulty after treatment, discomfort. Three weeks after chemotherapy I feel very weak, I have no strength. Then the body recovers a little, but it is time to go back to the hospital. it’s how I live, I don’t know what will happen next and how it will end ”, he opened, who repeatedly said during the conversation that he was worried about the future.
Prior to retirement and for some time in retirement, J. Andziulis worked at Marijampolė Heat Networks for 25 years. The work was carried out in shifts, the interviewer was responsible for the organization and the smooth running of the shifts. I had to work on both holidays and weekends, no matter what day the attack occurred. Now the man enjoys reading books, farm work, and a farm inherited from his aunt, where he likes to hang out and, as he says, “scratch himself.”
“It’s a shame, but this disease interferes with normal activities. After the hospital I wake up at home, I walk, I work hard. I would still have that energy, I didn’t feel very outdated, but the quality of life changed a lot when I got sick. Not only the weakness torments, now the lymph nodes are also greatly enlarged. I look forward to what happens next.
Access to treatment for people like me is very important. Treatment is needed today, making it difficult for me to understand why decisions are delayed to compensate for necessary medication. I have worked all my life, I have paid taxes, but I cannot buy the necessary medicines. For an ordinary person, this is impossible. Officials do not sympathize with ordinary people, “said J. Andziulis.
Photo of the report authors / Juozas Andziulis
There would still be that energy left, I didn’t feel very outdated, but the quality of life changed significantly after I got sick.
The disease accounts for only 1-2%. newly diagnosed blood diseases
Skirmantė Černauskienė, a hematologist at the Center for Hematology, Oncology and Transfusionology at the Santara Clinic of Vilnius University Hospital, said that Waldensstrom’s macroglobulinemia, also called lymphoplasmacytic lymphoma, belongs to the group of slow lymphomas.
“Lymphoma is an oncological disease of the lymphatic system, responsible for our immunity. Lymphoma accounts for about one third of all diagnosed blood cancers and is a heterogeneous disease, with more than 50 different types of lymphoma known, each with different genetic changes, course, prognosis, and treatment. Depending on the course of the disease, lymphoma can be divided into slow and aggressive.
Valdensstrem macroglobulinemia is characterized by the uncontrolled proliferation of altered B lymphocytes, which normally produce immunoglobulins necessary for the body’s defense against infections, in the bone marrow or other organs of the lymphatic system.
The altered cells begin to produce too much ineffective immunoglobulin, which does not perform its immune function but increases the thickness of the blood and causes associated symptoms such as fatigue, dizziness, shortness of breath, vision problems, etc. Other diseases characteristic of lymphomas also occur often in this disease: fever, night sweats, weight loss, enlarged lymph nodes or spleen ”, S. Černauskienė described the characteristics of the disease.
The hematologist emphasized that Waldenstrem’s macroglobulinemia is a very rare disease: on average, one case is detected per 200,000 inhabitants per year in Lithuania, which is only about 1-2%. all newly diagnosed blood malignancies. The disease is most often diagnosed in the elderly (60 to 70 years).
Treatment options in Lithuania are very limited
“Because Waldenstrom’s macroglobulinemia belongs to the group of slow-moving lymphomas, in some cases it is diagnosed randomly during a preventive examination, with changes in blood counts or a slight increase in the lymph nodes of the spleen. In such cases, even in the presence of generalized but slowly progressive non-aggressive disease, only surveillance is used. Research has shown that surveillance tactics in such situations are safe and do not affect patient survival.
However, in other cases, when the patient suffers from the above symptoms, treatment should be started immediately. Unfortunately, the treatment options for this disease in Lithuania remain very limited: Waldenstrom’s macroglobulinemia is not compensated by immunotherapy, which is the standard treatment in most Western countries, so usually only chemotherapy can be prescribed.
Unfortunately, some patients do not respond to this treatment or recur after a while, and some patients may not be eligible for chemotherapy due to comorbid conditions, since the disease is common in the elderly. In such cases, only palliative care is currently available in Lithuania.
Meanwhile, research has shown that the groundbreaking first-generation drug, a severe kinase inhibitor, prolongs survival and reduces disability in patients for whom first-line chemotherapy is ineffective or inappropriate due to the patient’s condition: infections. life-threatening, hemorrhage, improved well-being and quality of life of the patient.
It is gratifying that this drug is already being reimbursed for the treatment of some other blood disorders, sadly not yet available to Waldenstrem macroglobulinemia patients, despite scientific evidence and global treatment guidelines. Every year there are between 5 and 7 such patients in Lithuania for whom treatment with this drug is the only way to achieve disease control, improve quality of life and survive.
I would like that with the progress of medicine, both in Lithuania and in other western countries, this treatment was available and patients could receive the best treatment known today, ”said S.Černauskienė.
World Lymphoma Day celebration focuses on availability of treatment
On September 15, to mark World Lymphoma Day, the Blood Association, which unites people with blood diseases and their families, seeks to draw attention to symptoms, details, treatment options and results of this disease.
“I would really like to say that people with lymphoma are currently receiving all the approved treatment in Europe in Lithuania, but this is not the case. Especially when we are faced with rare forms of lymphoma, of which there are more than 85,” said Ieva. Drėgvienė, president of the Kraujas association.
Photo by J.Kunigiškytė / Ieva Drėgvienė
According to the law, for patients with very rare diseases and conditions, reimbursement decisions must be made within 40 days.
“Despite the request from the Lithuanian Society of Hematologists for the treatment of Waldenstrem’s macroglobulinemia with a macroscopic kinase inhibitor more than 8 months ago, no decision has been made so far. And, to be more precise, the Commission did not even consider the request of the doctors.
Unfortunately, this is just one example of how the treatment of patients is not decided by specialist doctors, but by officials. Attitudes towards people with cancer have not yet changed: there is no desire to think about how to help patients get vital treatment as quickly as possible. The search for ways not to compensate for drugs by delaying the process remains in the first place. Such a situation will probably not change in the near future if there is no responsibility for non-compliance with laws and deadlines, especially when we talk about the availability of treatment, ”said I. Drėgvienė.
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