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Multiple myeloma is an incurable cancer of the haematopoietic system. It is estimated that almost 7 people suffer from it in Poland. people. Its first symptoms are not very specific, so it may develop insidiously for a long time. Meanwhile, an early start of treatment can significantly extend the patient’s life.
Mariola Grabarczyk is 55 years old. When the first symptoms of multiple myeloma appeared eight years ago, she did not even suspect that she might be suffering from something serious. – In January I went skiing with my family and I still felt discomfort in my spine. It wasn’t pain, just the feeling that I could feel that spine. Back then it didn’t even occur to me to go to the doctor with it, she recalls. – When I was driving the car and shifting in reverse, I felt that my hand was weaker. It was similar when getting into the car or putting away my purse – she adds.
Dr hab. n. med. Lidia Gil, a specialist in the field of hematology, confirms that multiple myeloma is difficult to detect in the initial stage of the disease. – Myeloma develops silently and insidiously for a long time. Usually, when a correct diagnosis is made, the disease is already in an advanced stage. Very often, the first symptoms are bone pain, especially back pain. That is why it is so important to alert patients that there is no such thing as “normal back pain” – any pain that is chronic or recurrent or tends to worsen should be consulted with a physician.
In addition to bone pain, frequent infections are another characteristic symptom of myeloma. Some patients also have various kinds of kidney problems. Infections, even several times a year, also appeared in Mariola. Despite this, it took a long time for her to make a diagnosis. Although, after returning from the trip in February, at her request, she had an X-ray of her spine, which showed some changes in it, the doctor was not particularly concerned.
– Easter is here. On the second day of Christmas, I had a party for 20 people and then they caught me. In the middle of the night, I felt excruciating pain. It was a crush in the chest. It hurt a lot, and after a few minutes it let go. Later my hands refused to obey me. I couldn’t move them. The notion that I would not be able to shower myself or brush my teeth was terrifying to me. I thought “everything, just not my hands” – recalls Mariola.
It was then that the several-month-long journey to an appropriate diagnosis began.
– I needed an MRI. It wasn’t that easy to fix, but it worked out in the end. The doctor who gave me the referral said that I should not worry about it, but that he would write “a tumor in the spine” on it, because he had to give me something to actually get this MRI. I wasn’t worried then. However, the test result confirmed that I have a pathological spine fracture.
As it turned out, Mariola walked for several months with a broken spine. – When I got this result, I left the hospital and made an appointment with an orthopedist. When he saw him, he grabbed his head. “So you let the lady out of there?” And I was so pleased that I managed to fix this resonance at all.
The patient bounced from doctor to doctor. Mariola was 47 at the time and it was believed that she was too young for a pathological spine fracture, so it was suspected that it was the result of tumor metastasis from another organ. The list of tests was mercilessly extended.
– One by one, I had gynecological examinations, but it turned out that everything was fine in this area. Next, the breasts were to be checked. For three weeks, I wandered from examination to examination. On the one hand, I prayed that they would find something and start treating me, and on the other hand, after each examination, I told myself “it’s good that it’s not it after all”. On an ultrasound of the abdomen, I told the doctor, “please do a good examination, because we are looking for some kind of cancer”. Looking back over all the years of treatment, these three weeks were the worst – reports the woman.
Indeed, patients with myeloma do often go from one specialist to the next. Bone pain makes them first go to internists, orthopedists or physiotherapists, who often lack knowledge and experience in diagnosing this rare disease. – It seems that a solution could be training for family doctors in this field – notes Dr. Lidia Gil. – In hematology it is a fairly common disease, but not globally in the population, hence the difficulties of doctors with its diagnosis. At the moment, together with the family doctor, we are preparing a publication just for primary care physicians, which will include information on how to diagnose myeloma.
– Sometimes a medical examination and a carefully collected history may suggest that the disease is much more serious than it may seem at first glance – explains the hematologist. – Important guidelines for the doctor should be, for example, changes in the patient’s figure or reduction in his height resulting from changes in the spine. The diagnosis of myeloma may also be suggested by abnormalities in basic laboratory tests, such as anemia, increased ESR, the presence of protein in the urine, and renal dysfunction.
In the case of Mariola, the first indication that it might be myeloma was the unusual result of bone scintigraphy. – Strangely, the scintigraphy showed that everything was fine. The doctor then told me: “I only have 5 minutes for the examination. The MRI showed that your spine was broken, the scintigraphy showed that everything was fine. I don’t know who was wrong. I am not a radiologist »says Mariola. – I thought that if he doesn’t know what to do, how should I know ?! I cried in the corridor. Then I was approached by a patient rights woman. She said she heard my conversation and offered to take the two results, go to the radiologist and find out why they diverge. She did, and it was the first time that it was suspected that this might indicate myeloma.
– Despite this, the doctors somehow abandoned this trail and the next examination I was directed to was a tomography with a particular indication of the lungs and spine in the damaged section – continues Mariola. Looking for everything they could in this area, they found a second tumor that looked like a thymoma.
– It was known that I was going to have an operation. It was necessary to repair the spine and excise the tumor. Then I found a fantastic doctor. She helped me find a good neurosurgeon. And I needed the best of the best because it was a very difficult episode – Th II. The chest had to be cut open, there is an aorta nearby – one inappropriate movement and I was in danger of paralysis.
Despite the prospect of a difficult operation, Mariola approached her as an opportunity, because if the doctors decided that it was worth performing this operation, it meant that the spine could still be repaired. – I was very positively surprised by the doctors. The thoracic surgeon who operated on me came to see me before the surgery to meet me. It was Sunday, he had a day off, and he just wanted to know who was going to be operated on and how I was feeling – he recalls.
– The operation lasted all day. A team of neurosurgeons and thoracic surgeons was involved. There was a fantastic moment after the surgery. I woke up gently, the doctor probably thought I was asleep. He was standing at my feet with the neurosurgeon. The doctor ran the wrench over my legs, I shuddered, and he said to his friend, “I knew that nothing was sleeping…. I was.” I’ve never been so happy. I thought I’d walk out of here on my own legs and went on to sleep.
Mariola’s operation was a complete success. The tumor in the mediastinum, which turned out to be a benign lesion, was removed and the spine was secured, from which the pathologically altered tissue was excised. Only the examination of the bone tissue showed definitively that it was multiple myeloma.
– In the conversation, the doctor immediately said “myeloma multiplex”. Of course, I had no idea what it was. The doctor dropped Latin, and I didn’t have time to surprise me. Then I went to say goodbye to the neurosurgeon and showed him the result. And he said, “Ah, multiple myeloma: 4-7 years.” Only then did I think it was bad.
Mariola thought, however, that since she already has a diagnosis, now it will be downhill. He would go to an oncologist, receive appropriate therapy, and begin treatment. She was wrong.
“Nobody told me where myeloma was treated, so I went back to oncology.” After all, it was cancer. And there I heard «You know, we don’t treat it. It’s probably in hematology ». I go to the doctors and they do not know where it is treated and whether a referral is needed or not ?! I am supposed to know?
– I was looking for a hematologist all July and started treatment in August. It seemed to me that the worst moment, when I did not know what was wrong with me and how to treat myself, was over. Now it should be downhill – I’ll get drugs.
Unfortunately, for years, one of the main problems faced by patients with multiple myeloma has been the lack of access to drugs. We are always one step behind Europe. When bortezomib was available in the first-line treatment abroad a few years ago, it was defined in Poland as a second-line drug. Meanwhile, studies have shown that it helps a lot for patients who have symptoms related to the kidneys, and it is this remedy that should be given first. Today, bortezomin is already available in Poland, but patients are fighting for pomalidomide administered abroad.
Dr hab. n. med. Lidia Gil, a specialist in the field of hematology, senses, however, that a new drug is not always the best drug for a given patient at a specific stage of the disease. – Today, the portfolio of drugs that can be used in myeloma is large. There are also new agents that are entering therapy or are currently under investigation. I am a doctor with over 25 years of experience and I am happy to start treatment with new drugs, but I always warn patients and watch myself so that I think carefully before implementing them into therapy. Changing the therapy to a very modern one is not always a good decision, and patients often demand it because they think it is the best approach – explains the doctor.
– In most cases, we can control the disease for many years thanks to the funds that are available in Poland. – Sometimes it is indeed the case that there is a drug that we would very much like to include in a particular patient for treatment, but it is not available. Then we try to get it through various foundations or directly from pharmaceutical companies.
This was also the case with Mariola. – At the beginning of the treatment, I found an association in Olsztyn. Eight years ago, it took two months to get thalidomide. I got it from the association almost immediately. Then I had to return these drugs to them, when I had “mine”, but I could start the therapy earlier.
For many years, Ms Mariola has been a plenipotentiary of the Carita Żyć ze Szpiczakiem Foundation. This is where myeloma patients have the opportunity to exchange their knowledge and experiences. – In October I had a tumor on my arm – reports Mariola. – My blood results are perfect, and yet this tumor. It turned out that there was a patient who also had such tumors. I called him right away. He informed me that he treated it with radiation therapy. I also received such treatment and after the entire cycle the tumor disappeared – the hand is perfect.
The foundations also provide information on where and how to be treated. – When patients call our foundation, we are sometimes terrified of how they are led. Then we offer them consultations with doctors who really know it. The Foundation also finances such consultations for patients who cannot afford it. Then they are taken into good care and in good hands.
Thanks to the efforts of her doctor, Mariola takes pomalidomide, which is not widely available in Poland. He feels good and takes full advantage of life – he goes abroad, even to distant Asia, and practices sports. However, he lives with the awareness that the hardly obtained pomalidomide may stop working. Then she will have to use a different therapy. It is difficult to assess whether the agent she will need then will be available in Poland.