After spending an entire weekend feeling body aches and a kind of muscle fatigue, administrator Claudestony Nascimento, 39, decided to see a doctor on Monday. At the hospital, an orthopedist prescribed pain medication and gave him a 15-day rest certificate. It was no use.
After another 15 days away from his job as manager of a lottery agency, and a period of vacation, he decided to seek a diagnosis. Orthopedists, neurologists and infectious disease specialists turned Claudestony inside out and outside in. Between June and November 2015, the administrator went through several doctors, fractured his spine and lived with a lot of pain.
He had to move permanently to a new city and start treatment for his real problem: multiple myeloma. Despite being a rare disease, it is the second most common type of hematological (blood) cancer, it is a cancer of the plasma cells, which are the cells that form antibodies. To this day, the cause of multiple myeloma is not known and it also has no cure.
“The symptoms are very confused with those of other diseases”, says Edvan Crusoe, a doctor at UFBA (Federal University of Bahia) and Rede D’Or Oncologia, in an interview with Live well. Before knowing about multiple myeloma, there were other suspicions for Claudestony’s symptoms, and he even started treatment for bone tuberculosis.
Because of Claudestony’s young age — at the time of diagnosis, he was only 33 years old — the medical staff who treated his symptoms also ruled out multiple myeloma.
“Old people are generally affected, over 65 years of age, and many people died before reaching a diagnosis,” says Crusoe. Bone pain among older patients is often confused with old age pain, such as hernia or osteoarthritis. “The person takes an anti-inflammatory and doesn’t investigate,” she says.
“This disease is very silent and there is a certain lack of experience on the part of doctors in diagnosing”, says the man from Pará. Until reaching the actual diagnosis, Claudestony underwent a battery of tests and traveled from his hometown, Tucuruí (PA), to Teresina and then Belém, where he discovered what he had.
According to a survey by the pharmaceutical company Sanofi in partnership with Ipsos, 19% of the population in the northern region of the country had or knew someone who had multiple myeloma.
For almost a year, Claudestony treated multiple myeloma with chemotherapy in the capital of Pará. “It’s just that I wasn’t seeing any improvement, I was always weakened”, she says. “I couldn’t even go to the hospital, I paid a nurse to apply [da químio] at home.”
Frustrated, he decided to move again and went with his family to Goiânia, where he had uncles who work in the health area. There, he underwent chemotherapy from Monday to Saturday. “It was much more difficult, totally different, but it worked”, recalls the administrator.
After 14 sessions of chemotherapy, Claudestony was referred for a bone marrow transplant. In cases of multiple myeloma, the indicated transplant is of the autologous type, that is, the patient’s own stem cells are used in the procedure, it is not necessary to depend on a donor.
Claudestony had the transplant through the SUS in 2018 and needed a high-cost drug to keep the cancer in remission. “I tried all public agencies, but the state refused,” she recalls. After only a year, the illness returned and he needed the medication anyway. Claudestony hired a lawyer and got access to the drug lenalidomide through the health plan — a drug that costs more than R$20,000 a box.
He still takes medication to this day as a form of treatment for the disease and continues to undergo chemotherapy once a month. “This will be indefinitely, but after I started taking the medicine, even my doctor sees the difference,” he says.
Claudestony was never able to return to work, having to retire on disability before the age of 40. Leaving his profession and his hometown behind are two of the most difficult events for him to deal with: “The fractures in the spine limited me a lot”, he comments. “My head wants to work, but my body doesn’t help because of the pain and injuries,” he says.
In addition to the sequelae caused in the spine, he injured his right arm when he had a seizure four years ago. “I looked for a doctor because I had knee pain and there in the hospital, I hurt my arm and passed out, I woke up two days later in the ICU”, he says.
For him, family support is essential to not sink your mind into problems. The parents, who still live in Tucuruí, gave a lot of strength. The brother lived with him to help with the treatment. “My brother gave up his life to stay with me for two years, he lived with us between 2016 and 2018,” he says.
Multiple myeloma taught Claudestony to enjoy life better. “I feel pain because I don’t behave at home,” she admits. He shares household chores with his wife. “I clean house and I like to cook”, he says. “My wife is my arms and my legs,” he says.
With her 7-year-old son — who was born around the time the first symptoms appeared — Claudestony plays ball and rides a bicycle. He has become so fond of two wheels that he can cycle for 50 km, a mark that impresses even his doctors. “We cannot live with the disease, we have to live life”, he reflects. “Sometimes I don’t even remember that I’m sick”, he celebrates.
Although multiple myeloma is still a disease without a cure and its causes are known, doctor Edvan Crusoe says that it is one of the most revolutionized in the last ten years from the oncological point of view. “There were very few drugs, from 2013 onwards, many new ones were approved”, he says. “Patients generally had a survival of three, at most, five years. Now we talk about ten years, even longer”, he says.
There is no method of prevention, as the causes of the disease are unknown. But if an early diagnosis is made, the patient can live well, without sequelae such as bone fractures and kidney failure.
As the symptoms can be confused with those of other diseases, the doctor explains that there is an acronym in English that can help identify multiple myeloma: CRAB: the C is for hypercalcemia (high level of calcium in the blood), the R for renal failure , A from anemia and B from bone lesions.
Patients usually arrive with these symptoms, but one test that can help with the diagnosis is protein electrophoresis, says Crusoe. “It can identify a wrong protein in the blood early,” she says.