This excerpt is from the review of our patient Alsou Badaeva, addressed to the doctors of the NMRC for Hematology. In messages such as these, patients are not often forthcoming with details, but rather provide statements of fact: I got sick, I was cured, thank you! Sincere stories motivate and inspire, and not every patient is ready for the publicity, but not Alsou! Today she is ready to charge with her energy and give support to everyone who, like her, is faced with a terrible diagnosis. In 2022, she was diagnosed with large B-cell lymphoma of the central nervous system with multiple brain lesions, but the doctors of the NMRC for Hematology have restored hope and faith of the future to mother of six children.
Discharge from the maternity hospital with their sixth child. January 2022.
"When I was hit with this news, I was 39 years old," Alsu Badayeva begins her story. “Before that, in April 2022, I gave birth to my sixth child safely. I went through the whole pregnancy wonderfully. A good, healthy child was born. As they say, nothing foreshadowed the trouble ahead."
In April 2022, just three months after the birth of the sixth child, an incomprehensible event occurred. My head began to spin and my speech began to slur. I lost all coordination. I was running a company at the time and thought that because of my work stress, I was having a stroke. The ambulance was called when I lost consciousness at home. The hospital began to conduct anti-stroke therapy. The IV increased my blood pressure and made things even worse. I went to the republican hospital, where I was given an MRI for the first time. It showed that there was an outgrowth of unknown origin in the cerebellum. As the doctors explained, this was the cause of my condition. At that time, my left side was already paralyzed. I could hardly walk. My legs were working and there was strength in my muscles, but all objects floated before my eyes.
I was set on fighting a stroke. I thought it would be okay – physiotherapy, pills. When they told me that it was a tumor, the news stunned me. Honestly, there were tears. But I quickly pulled myself together. And from that moment on, I simply did not allow bad thoughts. I was even offered the help of a psychologist in Kazan, but I refused. I accepted this disease and even told my husband: "If the Almighty wanted to take me away, He would have done it quickly, but He gave me this opportunity to pass this test." I was setting myself up for a cure. I had something to fight for. I've always told my loved ones: "I'm not going to die!” And I came across those people who would help me in the road to recovery.
THE FIRST SUSPICIONS OF LYMPHOMA
The neurosurgeon looked and said that I had some kind of neoplasm and offered to go to Moscow and perform a high-tech operation using a gamma knife. With the help of telemedicine technologies, we contacted the Burdenko Clinic, sending them all the research results, including the MRI. They wrote to us that this neoplasm may relate to lymphoma and it is necessary to do a biopsy. This meant carrying out a trepanation of the skull. Even imagining this procedure caused fear. The doctors said: “There is no alternative. This is the only way out. If a biopsy is performed, they have to open skull completely, otherwise hemorrhage may occur.”
IN SEARCH OF A MIRACLE OR FEAR OF TREPANATION
Before agreeing to the operation, we tried all sorts of unconventional methods and visited all of the healers. No one helped. Terrible headaches began, which couldn’t be stopped with anything. I had already been diagnosed with hydrocephalus at the Republican Clinical Hospital. According to doctors, due to a violation of the circulation of cerebrospinal fluid, the accumulated cerebrospinal fluid squeezed the brain. Another half hour and I could have fallen into a coma. In addition, another MRI showed that the number of neoplasms had increased and that some had appeared in the frontal part of the brain. On the one hand, new tumors had become an even greater barrier to the outflow of cerebrospinal fluid. On the other hand, it was the location of these new tumors that made it possible for doctors to conduct a biopsy and finally find out what kind of tumor it was. The fact is that it was very risky to conduct a biopsy in the area of the cerebellum where the first tumor was found.
Hydrocephalus of the brain – develops due to an excess of cerebrospinal fluid in the cranial cavity. Normally, the cerebrospinal fluid is absorbed by the membrane of the spinal cord and brain. From there, it penetrates into the blood. If this process is disrupted, the liquid accumulates in excess and leads to negative consequences.
As a result, on July 25, my head was opened, the fluid was pumped out and a catheter was installed. Every time I had spasms, with the help of a catheter, I independently pumped out the water that accumulated in the brain, and the pain receded. A biopsy was performed on July 27. Dexamethasone was prescribed. The dosage was several times higher than the average prescription. There was talk of installing a permanent shunt. The tactics of Kazan doctors at the consultation were supported by colleagues from Burdenko.
A shunt is a plastic tube that creates a permanent alternative outflow of cerebrospinal fluid from the head into the abdominal cavity. In the abdominal cavity, the fluid should be reabsorbed into the venous blood. The point of all bypass systems is to maintain optimal pressure inside the head.
However, the best shunt is the absence of a shunt. This opinion was also held by one of my attending doctors. He said that I was a young woman and a shunt, which is installed on a permanent basis, in my case was not the best solution to the problem. And indeed, over time, the pain receded. Hormone therapy may have helped. They wrapped and bandaged me up and let me go home, where I continued to drink dexamethasone. It was recommended that I go to an oncology center.FROM ONCOLOGISTS TO HEMATOLOGISTS
Republican doctors explained that the situation was quite atypical. The disease is very rare, so accordingly, there was no talk about any chances of a complete cure. Moreover, high-dose chemotherapy was required, and it was impossible to predict my body’s reaction. I appreciated the honesty. It was a push to move on. We started looking for help in federal centers. The choice was between two institutions. It turned out to be faster to sign up for a consultation at the NMRC for Hematology of the Ministry of Health of Russia. It took several days to resolve the issue of hospitalization.
"SHE IS THE MOTHER OF MANY CHILDREN. AND SHE NEEDS TO BE CURED.."
At the very first meeting, Professor Evgeny E. Zvonkov asked me a question: "What is your mindset?" And I asked: "Is there a chance? Is the disease curable?" He said it was curable and that there was a chance. And I remember I said: "If there is even a fraction of a chance, I will cling to the end and do everything that that is dependent on me." I will never forget how Evgeny Zvonkov invited two doctors – Olga O. Shchetsova and Daria A. Koroleva, and said: “Here's the patient. She is the mother of many children, and she needs to be cured, otherwise you will raise her children, three for you and three for you," says Alsou, laughing. Thank you, dear doctors, for a chance at life! For the fact that I am now at home, with my family! Thank you for bringing Mom back to my six children! The doctors then explained all of the subtleties associated with the treatment of the disease.
From left to right: Hematologist, Candidate of Medical Sciences, D.A. Koroleva; patient, A.R. Badaeva; Hematologist, Candidate of Medical Sciences, O.O. Shchetsova.
Daria A. Koroleva, hematologist of the Department of Hematology and Lymphoma Chemotherapy with Bone Marrow and Hematopoietic Stem Cell Transplantation Unit, Candidate of Medical Sciences
Primary CNS lymphoma is a rare B- cell lymphatic tumor. It primarily occurs in males and the elderly. The clinical picture of the disease is not specific. It depends on the location of the tumor in the brain. It can manifest as general cerebral symptoms, like headaches and convulsive seizures and focal: the development of paresis, paralysis, speech disorders and any neurological manifestations.
Before, it was the most complex of lymphomas, which was difficult to treat, and survival rates did not exceed 10%. These data were up to 2015. Under the leadership of E.E. Zvonkov, our center has developed two protocols for the treatment of patients with primary lymphoma of the central nervous system. In the first protocol we have 36 patients. Overall and relapse-free survival is about 80%. Recently, "Thiotepa", which was included in our first protocol, disappeared from the territory of the Russian Federation. In this regard, it was decided to make changes. In the modified protocol "CNS -20/21", "Thiotepa" was replaced with another antitumor drug — "Carmustine." This course also demonstrates high efficiency. There are more than 15 patients in the new protocol. Despite the median age being 60 years, we mostly have young patients. Patients tolerate these protocols quite satisfactorily. We have not had a single case of a fatal outcome related to toxicity, and the results are quite encouraging. Stem cell transplantation is used as a strengthening therapy.
REACTION TO THE NEWS
When relatives found out about my tumor, they were shocked. My husband was very worried. His mother died of cancer at the same age as me. So, at some point I had to calm him down and promise that everything would be fine. My relatives were very worried: my mother, my aunts, and uncles. My father-in-law was afraid to call and found out everything through his sister. He called only on my birthday, burst into tears, and confessed that he had become very sentimental. I calmed him down then and told him that I wasn't going anywhere just yet.
ABOUT THE SUPPORT OF LOVED ONES
For some time, my husband was with me 24/7. He supported me not only day to day, but also set me up to fight the disease. The special person in my life is my sister. We have always been friendly since childhood, but adult life can bring distance. Everyone has their own family. My sister also has three children. Of course, we call each other, we meet on holidays, but this disaster that had happened to me had united us even more. It was she who called the federal centers and dealt with all organizational issues. In order to relieve my husband and be with me in the hospital, she quit her job. We had a moment in our life when, while staying with my grandmother in the village, a dog attacked us. We then thought it was a wolf and I shielded her with my body. I was four years old at the time, and she was two. And after more than 30 years, she became the shield that gave me the opportunity to believe in the best.
The families of Alsou and Venera Badaev
TREATMENT AT THE NMRC FOR HEMATOLOGY
The treatment lasted from August 31 to November 23, 2022. Since the bone marrow was not affected, my own cells were transplanted back to me. The collection was made on the third course of chemotherapy, and on the fifth they were injected back. The doctors honestly conveyed the possible consequences. Of course, I was worried. An interesting fact: my white blood cells dropped to only 300. I then thought: "Well, now my 300 Spartans will start fighting." I was impressed not only by the professional level of the doctors and nurses, but also by the human approach of the entire staff. Mom once remarked: "They remembered that you drink compote without berries!" Even such seemingly insignificant things speak volumes. The staff of the department does its best to make both the patient and the carer comfortable. Of course, this is the work of a real team. It was on November 23, according to MRI data, that doctors stated that I had achieved complete remission.
SELF-MOTIVATION THAT MAKES YOU NOT GIVE UP
I called myself "Yakut tambourine.” I have a slightly elongated face by nature, and because of hormone therapy, it became like a balloon. But, despite such a transformation of my appearance, I always tried to keep my manicure in order and put on my large jewelry. The doctors supported me in this, noting that it contributes to recovery.
During treatment at the NMRC for Hematology
Of course, I missed the kids. Once in the hospital I had a dream that I had the little one in my arms. I woke up then all in tears. We were constantly in touch. But I tried not to think that they felt bad without me. I knew they would be looked after, and that I needed strength to fight the disease. I have a very strong character, ever since my youth. When I was 16, my dad died, and my mom then said that I would take the place of my father. From that moment, I had a lot of responsibility. And this responsibility — for loved ones, during the illness gave me a reason not to feel sorry for myself.
BOOK OF RECORDS
I always wanted to have a lot of children, though I didn't think there would be six. At the age of 18 I was diagnosed with a huge cyst, and after the operation the doctors said that I would not be able to have children. And as a result — six! Why? We love them. It's like living a lot of different lives with children. All of the things we couldn’t achieve ourselves, our children achieve. And these are also our achievements. We are included in the Book of records "Large family.” Frankly speaking, my husband and I wanted to take more kids from the orphanage, to give them the opportunity to grow up in a family. Many do not understand this, but we believe that if there is an opportunity to give someone a chance for a better life, then it must be given.
The Badaev family is included in the Book of Records "Large family"
INSPIRE AND SHARE ENERGY
We are a very friendly family. We have always participated in various competitions, participated in various ski races and ran marathon distances. The children have always been involved in sports. The eldest daughter is a world wrestling champion. Of course, I want to return to my old life and also actively spend time with my family. The doctors did their job 100% and now it's up to me. I will need to learn to walk normally again. My hands are already working, my handwriting is almost the same as before the illness, and my eyesight has become better. Today, I have so much inspiration that I am ready to share it with others, with those who, like me, have faced the disease and do not know what to do next. After all, the most important thing is to not lose heart! It's not for nothing that they say — everyone by faith. And I'm ready to charge with my energy.
