Clear symptoms, but despite a medical odyssey there was no diagnosis for years. How Ilona Beyer still managed to get the right treatment for her blood cancer and what she advises other sufferers based on her experience.
Still alert and energetic in the morning, exhausted in the afternoon. And while hiking, you suddenly feel so exhausted that it becomes impossible to go any further. “My husband had to get the car to drive me home,” says Ilona Beyer about her frightening tiredness. The mid-60-year-old was extremely active up until then, often traveling as a self-employed event manager and trainer.
At first, she and the doctors suspected that this exhaustion could be a side effect of cancer therapy. Because of breast cancer, Ilona Beyer had to take a break from work in 2006, underwent surgery and, among other things, received radiation therapy.
As part of the cancer treatment, which worked very well, her blood was tested regularly. It was already noticeable back then that her platelets and coagulation factors were elevated – to put it simply, the blood was too thick.
The oncologist sent her to four different specialists for evaluation. But nobody could find out anything. After all, one of them gave her acetylsalicylic acid (ASA) to thin her blood.
“Today, when I look at the sheets with the blood results from back then, all the alarm bells ring in my head – how could they just send me home with these values?” she criticizes.
However, giving up because the doctors couldn’t find an explanation for the constant tiredness wasn’t an option for the tough manager. She researched on the Internet and slowly began to suspect that she might have blood cancer. Her acceptance was confirmed in 2013 – after at least seven years of illness.
Her family doctor wanted to have her blood values checked more closely and referred her to another oncologist. The cancer specialist carried out additional blood tests and sent the samples to a Munich leukemia laboratory. Then the diagnosis was clear: polycythemia vera (PV).
The disease is one of the so-called myeloproliferative neoplasms (MPN), a rare group of malignant blood cancers. The causes of PV: A non-hereditary, genetic change in the blood-forming cells in the bone marrow.
As if a switch had been flipped incorrectly, too many blood cells, especially red blood cells (erythrocytes), are produced in the bone marrow. The hematocrit value increases significantly. Hematocrit is the proportion of blood cells in relation to blood volume.
At first this has little impact. Over time, however, the blood becomes viscous. If left untreated, the risk of thrombosis, stroke and heart attack increases dramatically. These events are the cause of every second death of PV patients.
In addition, polycythemia vera can progress into a form of acute leukemia. However, if treated correctly, PV becomes a chronic disease that is easy to live with, as Ilona Beyer can say from her experience.
“But what still makes me angry today: Why had none of the doctors I had previously consulted done these blood tests that can clearly detect the typical imbalance of blood components and the genetic change – and thus quickly provide the diagnosis?” she asks herself . Her case is an example for many blood cancer patients.
Because external signs alone can hardly be used to conclude that PV is present. Weak drive and fatigue, but also pain and itching, are very unspecific symptoms and can occur in many diseases.
This is why it often takes many years for polycythemia vera to be diagnosed. This wastes valuable time that could be used for therapy and prevents the flood of blood cells from being throttled and life-threatening blood clots and plaques from forming.
The first choice of treatment for PV is bloodletting, and this is how Ilona’s therapy started. This old method can significantly reduce the hematocrit value, especially at the beginning of the illness. But for Ilona Beyer the effect fell short of expectations; the illness had already become too established.
What’s more: “And with the excessive amount of blood, I also had a lot of adrenaline in my blood and became aggressive.” At the same time, the doctor wanted to give her iron – counterproductive in her case. This led to problems between the patient and the doctor, which culminated in the doctor’s remark: “Are you the doctor or me?”
Ilona stopped the treatment there and found out more and turned to a competence center for myeloproliferative neoplasms (MPN). There she finally found the right therapist.
In addition to blood tests, the focus here is on detailed questions about symptoms. The patient’s environment, such as his partner, can also have a say. It is precisely because the symptoms are so non-specific that careful questioning is so important.
After these detailed examinations, the treatment was decided. “I have been taking a medication with so-called JAK inhibitors twice a day since 2017 – and I have recovered significantly,” she reports on the success of the therapy.
The active ingredient has only been approved in Germany for around ten years and interrupts the signaling pathway that triggers the constant overactivity of blood-forming cells.
However, as a side effect, the immune system is somewhat reduced, but the patient can deal with that well. She speaks openly about pneumonia, for which she had to be hospitalized for a few days – a side effect of the immunosuppression. By the way, in consultation with her team of doctors from the competence center, she also took her tablets during the treatment in the hospital, but half the dose. The second side effect of the drug is weight gain. By changing her diet, she lost 17 kilos of excess weight.
But the most important thing: the disease has stopped and the regularly checked blood values are almost within the normal range. The platelets are still slightly elevated, but not as dramatically as before the start of therapy.
That’s why she takes aspirin every day to thin her blood. And she feels really fit again. The really leaden tiredness, the fatigue, has disappeared. “The medication has given me back my quality of life,” is her conclusion.
She can only advise other sufferers not to be satisfied if doctors find nothing despite the distressing symptoms. However, not everyone is a fighter like Ilona and can reclaim their old life through personal commitment.
That’s why her advice is to contact the right specialists. In her case, as she emphasizes, to a competence center for hematology. This is an association of experts in blood diseases. Here you can assume that the practitioners have experience and are up to date with the latest medical technology. Her positive view of the future: “That’s why I’m so happy about the new hospital law, because it allows us patients to find out in hospitals who have a certain level of expertise.”
More information at https://www.mpn-netzwerk.de/
