– It is unethical for cancer patients to die while there is a treatment that works, says Hatlebrekke. The 53-year-old was diagnosed with bowel cancer just over two years ago, and a few weeks later he learned that the cancer had spread to the liver. The cancer in the liver had then progressed so far that it was out of the question to operate, and therefore he was transferred to so-called palliative treatment at a hospital in Oslo. Then Hatlebrekke’s hope of recovery disappeared, and he was offered pain-relieving and life-prolonging treatment. He refers to it as receiving a death sentence. – It was a “heavy” message to receive, says Hatlebrekke. Decorated intelligence officer news meets him at home in his apartment in Oslo. This is where the decorated specialist director of the National Intelligence Service gathers strength between tough battles. After a long professional life in the Armed Forces, with war experience from, among others, Afghanistan, Bosnia and Iraq, he is used to solving complicated tasks and dealing with dangers. When he was offered to participate in the Excalibur study at Oslo University Hospital (OUS), he had no doubts, knowing that the average survival for this form of cancer without treatment is about half a year. Chemotherapy pump In the study, which started in 2021 , the patients draw lots to decide which treatment they will receive. The part of the study in which Hatlebrekke took part consisted of three treatment options. Transplantation of the liver, chemotherapy directly into the liver via a pump and regular chemotherapy. Transplantation of the liver was not an option at that time, so he hoped for pump therapy. In the study, the method is referred to as effective in selected patients. – Then I saw hope again, but then I drew the wrong lot. That is, I ended up in a control group that received regular chemotherapy. Once again, it felt like receiving a death sentence, he says. Ongoing study The Excalibur study has been ongoing for a little over a year and a half, and is led by section chief at the liver, pancreas and bile duct surgery section at OUS, Kristoffer Lassen. He does not wish to be interviewed in this matter, but replies by e-mail that it is too early to say anything about the results of the study. – Whether pump treatment helps the cancer better than the current standard treatment, it is far too early to say. We have patients who have had a good response and others with no response at all, he writes. One hospital that has adopted the pump treatment for several years is the Memorial Sloan Kettering Cancer Center (MSKCC) in New York. There, they have offered the treatment to selected patients, who have had good results. Several other hospitals in the US also offer this treatment, such as Penn Medicin and Duke Health. Why is pump therapy not part of cancer treatment in Norway now? – Almost all documentation for this treatment technique originates from a single hospital in the USA, and there are no studies of high scientific quality that cover the patient group for which we are now trying to find better treatment. We therefore do not have sufficient scientific basis to say that the treatment is effective for patients in this situation, writes Lassen. He adds that the chemotherapy used in the pump (Floxuridin) is not approved in the EU or in Norway. – We only have approval from the Norwegian Medicines Agency (SLV) and the ethics committee (REK) to use the drug and the pump within the Excalibur study. Has paid millions Despite a serious illness, Hatlebrekke has also had good days in New York. He says that he experienced a good effect from the pump that was operated on. Photo: Private When Hatlebrekke eventually became aware that it was possible to travel to New York and operate a pump on his own initiative, he chose to accept good help and financial support from friends and colleagues in the Armed Forces. Last autumn he withdrew from his studies and moved to New York for a period. But it cost. The operation itself, the follow-up and stay in New York have cost several million kroner. – The treatment had an immediate good effect and brought the cancer in the liver under control. All the metastases in the liver became smaller and in that sense it has been a success, says Hatlebrekke. The problem, according to Hatlebrekke, is that he started the treatment too late. – Before I left for the USA, I was put on a cancer medicine called Regorafenib. It is a medicine that the doctors at MSKCC said they had very bad experiences with. During the three weeks he was on the medication, the cancer values increased sharply. Hatlebrekke had a chemotherapy pump operated on in New York last autumn. The operation and subsequent follow-up have cost several million kroner. Photo: Private – The liver pump worked and could have saved my life. But it was too late, because in the meantime the Regorafenib tablets may have caused my cancer to explode, says Hatlebrekke. At the time, he was associated with the outpatient clinic at the department for cancer treatment at Diakonhjemmet. Regorafenib is approved according to current national guidelines as a 3rd or 4th line treatment for metastatic bowel cancer, says senior physician and specialist in oncology at Diakonhjemmet, Morten Brændengen. – The fact that he quickly became unwell with a rise in CEA was probably related to the disease and not the short-term treatment, says Brændengen. The doctor in charge at MSKCC, Nancy Kemeny, has not responded to news’s repeated requests for an interview in this case. Commercial interests Kristoffer Lassen is aware that more Norwegians choose to travel abroad and seek private cancer treatment. Without commenting on Hatlebrekke’s case specifically, he says that the information they receive about what they can expect from won health can in some cases be colored by the commercial interests of these institutions. He further explains that patients who are in the Excalibur study and receive standard treatment cannot obtain such a pump privately, without simultaneously withdrawing from the study. – We only have permission to use the pump and this particular drug within the study and cannot assist with the use of the pump in patients outside the study, he says. Few participants As there are relatively few participants in the Excalibur study, Rikshospitalet contacted MSKCC and informed them of the consequences of Norwegian patients having a pump operated on at the hospital in New York. – If a larger number of patients were to withdraw from the study’s control group in order to have such a pump installed at MSKCC, our study would have to be stopped, Lassen writes to news. He denies that they have asked the American hospital not to operate pumps on Norwegian patients and does not want to comment on how many have possibly withdrawn from the study. Lassen writes that Norwegian patients who wish to have a pump inserted in the US can of course do so, but they cannot then be included in Excalibur. As the treatment continues, Hatlebrekke realizes that the cancer can no longer be cured. He says he is not afraid to die. – But I am afraid of the period before I die. Photo: Stig Jaarvik / news Hatlebrekke’s cancer has now spread to the lungs, where more than 20 metastases have been registered. On his own Linkedin profile, he writes that: “Nobody can be cured with as much spread in the lungs as I now have. To receive a death sentence at such a young age I would not wish on anyone, and to know that I might have been saved is a personal tragedy so great that it is impossible to explain in words.” He believes the Excalibur study should be reassessed and believes it is unethical that Norwegian patients do not receive, in his opinion, what is the best treatment. – I went into this study with joy. I knew it was a randomized trial, but I was hoping I’d draw the winning ticket. I didn’t, says Hatlebrekke. He is very critical of the increasing use of randomized trials. – It has become the new gold standard in research, but is time-consuming, especially in a small country like Norway. Within certain areas it has something to do with it, but not with people who are terminally ill. – Not unethical Lassen says he understands that Hatlebrekke is in a difficult situation, but denies that the study is unethical. – Randomized studies are subject to very strict control from the ethics committee (REK) and the Norwegian Medicines Agency (SLV). Together with the Americans and the Dutch, we are helping to clarify whether this is a treatment that produces a better effect when compared directly to standard treatment. When randomising, we ensure that the patients in one group have a better (or worse) starting point than the other. A randomized controlled trial is the gold standard in medical practice to investigate whether one type of treatment is better or worse than another. – Certain patients will be disappointed if they do not enter one or the other treatment arm, but no patient receives worse treatment than standard, established cancer treatment, writes Lassen. The cancer is spreading Hatlebrekke now has cancer in his lymph node which continues to grow, metastases in his lungs and has realized that he is going to die with cancer in his body. Apart from the follow-up he received at the local hospital in his home village of Volda for a period, he is not satisfied with how he has been met as a cancer patient in Norway. – What I really miss is a doctor who says he will do everything he can to get me well. One who never gives up. The Saturday revue 21 January 2023.
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– It is incomprehensible that a lottery should decide cancer treatment – news Norway – Overview of news from different parts of the country
