“They immediately wrote it off at work”: a patient spoke about life with blood cancer

Chronic lymphocytic leukemia is one of the most common types of blood cancer, popularly known as leukemia. In CLL, there is an excessive accumulation of white blood cells (lymphocytes) in the bone marrow, blood, lymph nodes and other organs, which are normally responsible for fighting infections.

Tumor cells produced by the bone marrow accumulate and crowd out healthy blood cells, leading to susceptibility to infections and other manifestations of disease. Although the disease remains incurable, today it can be controlled, and patients can achieve complete remission.

All the factors that provoke the development of CLL are not yet known. Although scientists have identified a genetic predisposition to CLL, only about 10% of patients have a hereditary disease. Most often, chronic lymphocytic leukemia in our country is detected in people over 62–64 years of age, but sometimes younger patients also seek help.

The disease in most cases is characterized by a slow, benign course. Patients may experience nothing for months or even years, except perhaps increased fatigue, lack of appetite and weight loss. In approximately 70–80% of patients, chronic lymphocytic leukemia is discovered accidentally during a routine medical examination or during an examination done for a completely different reason.

In some cases, the disease makes itself known by enlarged lymph nodes, bleeding, autoimmune complications and a tendency to infections. But over time, the disease gradually destroys the immune system and leads to severe complications.

Nikolay told us his story of a patient with CLL:

“At first I didn’t feel anything, I didn’t suspect that there was anything wrong with me. My condition was normal, the disease began gradually about 10 years ago. I have dedicated my entire life to field work in engineering. This is a complex of topographic and geological work for the construction of this or that structure: you need to know what geology, what foundations to choose correctly in order for a multi-ton structure to stand…

We carried out topographic surveys and created large maps in order to transfer this material to specialists for the successful design of a particular object or railway/road. I worked like that for 45 years. And I also worked in very extreme conditions, closer to the equator. There were high temperatures there – even in the shade it reached 52-53 degrees, not to mention what was in the sun. Solar radiation was very active.

Of course, this was unusual for me, a resident of mid-latitudes. I don’t know whether radiation affects the development of the disease, but after some time my blood began to deteriorate. This was first shown by an examination at a district clinic. At the same time, the district clinic did not react to the fact that my blood counts had changed. That is, they recognized the fact itself, but did not take any action. However, there was a tough and demanding medical commission at work.

At first, I tried to somehow bypass the annual medical commission, because I wanted to work. But this couldn’t go on for long: I had to say that I had problems with my blood. After which I was sent to the Botkin hospital, where they immediately diagnosed me. I felt generally good at that time. But with this diagnosis at work I was immediately written off.

I started seeing myself in the hematology department around 2014, and had a general blood test every three months. And then my lymph nodes began to slowly grow in my groin, under my arms and inside. At first the doctor said that it was not critical. Then, when they reached a critical state (30 or 32 mm in diameter), I was prescribed treatment.

— After you were diagnosed, what was your reaction to this news? How did you react?

— The reaction was even, because initially they said that the blood was bad. Of course, I was a little worried, but I was no longer at that age to panic, as people at a younger age tend to do. I was already 60 years old, so I took the disease philosophically. There was no particular panic.

—Have you heard anything about chronic lymphocytic leukemia before you encountered it?

– In fragments. White blood is how people talk about it, I’ve heard that people die from it. Thank God that it doesn’t turn into an acute form for me, it’s chronic.

— Why weren’t you prescribed treatment right away?

– With this diagnosis, no treatment is required at first: just observation. However, after a few years, the lymph nodes began to grow and bother me. I felt them even when they did a CT scan. The lymph nodes in the neck and armpits were especially disturbing – it was not very pleasant to look at yourself in the mirror. Therefore, when such symptoms appeared, the doctor prescribed modern targeted therapy with a fixed duration regimen.

The treatment lasted only a little over a year, as was initially explained to me: it began at the end of 2021 and ended in the spring of 2023, after the lymph nodes disappeared and blood tests approached normal. It would seem that in the current conditions, due to sanctions, there could be supply interruptions, but this, fortunately, did not happen. Medicines were provided free of charge. Now I am not undergoing treatment, I am under observation: previously I had bone marrow and blood tests done once a month, now once every three months. At the moment my condition has stabilized.

I followed all the doctor’s orders. I did everything in good faith, as I was told. Although initially I was wary of the prospect of treatment: it was not clear how the body would tolerate it. But the improvements were noticeable.

– What is your condition now? Can you describe how you feel?

– Probably in accordance with age, because I’m not a boy anymore. Somewhere something aches, but I think it’s the same for all my peers with whom I’m friends. I have friends from childhood, from the army, and from work colleagues. Sometimes we talk to each other – this hurts for one, and that for another. My main illness does not interfere with my life. I didn’t feel particularly unwell, I led an active life, I could go somewhere.

When I became freer from treatment, I began to go to sanatoriums – however, with leukemia, I was not always allowed to do physical procedures, or be in the sun, because I was “fried” by radiation for 7 years. Now I avoid sun rays – if somewhere to the south, it is better in spring or autumn.

We travel with our family to the Moscow region and lead a normal lifestyle. After therapy, my health became better: my tests returned to normal, the lymph nodes around my neck disappeared and can’t be felt (of course, I don’t know if they are all there or not, they start to become inflamed inside – the doctors know better). The readings are generally normal.

— Please tell me how the disease has changed your life?

— There are more visits to doctors. There is no longer a moment when you can drop everything and go wherever you want. But now, thanks to the fact that the treatment was fixed and ended, I have become freer. This year we have already gone to the sea twice, in the Moscow region. And, of course, I would love to work again, because the work was interesting, I loved it. I had to give it up. I’ll go for another bone marrow test soon. Let’s see what the doctors say.

– What are you dreaming about?

– I wish you peace in the whole world!

— What could you advise patients with the same diagnosis?

— CLL, as I know, often occurs in adulthood. I still advise you to treat the disease philosophically, follow all the doctors’ orders and often remember the optimistic Italian Silvio Berlusconi. He also suffered from leukemia, but died at the age of 87. He was a very cheerful person. Therefore, it is important not to lose heart and remain optimistic!