Week 44 - Peptide vaccine started, Karla and "Do not go gentle into that good night"

Written by Lars Haakon Soraas
27
Jun

Week 44 in the war on cancer. We gotten good news and we started the vaccine. But in this week of exits, I am angry. I am very very angry.

First the good news: we got the scan results on Monday when we met our oncologist here in Oslo. Both the PET/CT and the MRI were good. No growth of existing lesions and no new lesions. This is, of course, good news and this is the way we want to keep it.

Amino acid sequences for the 9 peptides included in the vaccine

As the scans looked good, we jumped on a plane and went to Krankenhause Nordwest in Frankfurt where Professor Elke Jäger gave Dyanne there got the first injections of the personalized peptide vaccine. 5 short peptides and 4 long peptides were injected. In the left arm, she got (intradermally) the peptide mix together with an adjuvant called poly-ICLC (Hiltonol). In the right arm, she got (subcutaneously) autologous dendritic cells that had been pulsed with the the peptides. Attached is a photo showing the amino acid sequences that make up the peptides. This is the result of 5 months of detailed analysis of Dyanne‘s tumor tissue by Professor Bojar and his colleagues in NextGen Oncology Group in Dusseldorf. Each peptide correspond to a mutation found in Dyanne’s tumor tissue. Is this the solution to cancer? Some doctors and researchers seem to believe this may be THE cure for several types of cancer. Time will show if it actually is. But if it is, wow, how beautiful a solution.

Dyanne getting the first vaccine injection by Dr Elke Jäger

Together with the vaccine, Dyanne got a small dose of nivolumab (1 mg/kg) and a small dose of ipilimumab (1 mg/kg). The plan (which may change) is to repeat the nivolumab every second week and the ipilimumab every 6-12 weeks.

All the drugs made Dyanne a bit tired. But apart from this, she has generally been in good shape this week.

The vaccination schedule is every second week. This means Dyanne needs to go back to Frankfurt for a new injection every 14 days.

Karla

Then the anger. While many were angered by the Brexit, for me, at least as devestating was the exit of Karla Siverts. Karla was 29 years old and had a 2.5 year old daughter. Karla had ovarian cancer and on Thursday evening she passed from the living to the dead. Our thoughts go to her husband and the little, now motherless, girl that she is leaving behind. Cancer is too often tragic, like in the case of Karla. But in her case, in addition to the sadness, I am filled with anger. Because THEY DID NOT TRY! THEY DID NOT EVEN TRY TO SAVE KARLA’S LIFE! They gave her treatment that they knew would lead her to the grave. Treatment they knew would lead to a child growing up without her mother. Treatment they KNEW would not work. Did they look for options? Did they, the doctors in charge of her treatment, try new things that could work if she was lucky? Did they explore the 242 ongoing clinical trials for ovarian cancer patients in Europe to see if any of them represented a reasonable shot at curing her? Did they try to be creative? Courageous? Ambitious? Did they even lift a finger to try to increase her chance of surviving from virtually zero to hopefully something? I don’t know her case in detail. But from what I understand, and judging from our own experience, they did not. I suspect the doctors in charge saw her death coming months ago and sat idly by and did exactly NOTHING! How can it be that we have doctors and a health care system that let’s a 29 year old mother die without even trying to save her life? How can a doctor sleep at night when they know a young mother will die and they do not even try to stop it from happening? How can a hospital boss authorize salaries of these doctors to be paid? How can our health care minister Bent Høie not fire the hospital boards that allow this to happen? How can the system be so accustomed to death and dying that no one bats an eye lid when a 29 year old women dies and all the doctors do is to sit idly by and watch? Who has given these highly educated and intelectually able doctors the right to NOT try to save her life? How can we have a system in Norway in 2016 that is so morally corrupt? How can our health care system, whose only purpose is to keep people alive and healthy, so completely have forgotten their reason for being? How many more young people will die before we wake up and realize that we should not accept so easily that young people die? We should fight against death. Giving treatment that we know does not work is NOT fighting. It is neither right or intelligent. It is wrong, it is so outright immoral and so incomprehensibly unintelligent it is hard to describe the disgust I am feeling.

We should fight against death. We should not accept a 29 year old women dying without trying to save her life. A powerful poem by Dylan Thomas comes to mind:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Young people in Britain are now waking up to realize that a Brexit they did not want is forced on them by the older generation who bothered turning up to the polling stations. We, the young, must learn to fight for what we believe in. There is no such thing as a free lunch and nothing will change unless someone does something about it. I am fed up of young men and women dying of cancer in Norway’s hospitals while doctors, hospital management and politicians sit idly by and do nothing. We cannot let this happen anymore. So today, I call on all young people to write to the representatives in our Storting and to our health care minister Bent Høie and demand that our health care system stops letting young people die with no one lifting a finger to try to save their lives. We should also demand an enquiry into the death of Karla. An enquiry that must show what Karla’s doctors did, and did not do, to try to save her. The enquiry should also map which options, either in Norway or outside Norway, could have been offered to Karla if the doctors had made a real attempt to save her life. And the enquiry should investigate why no such options were given to Karla, what the barriers, institutional or otherwise, were that hindered this from happening.

So I ask you, friends, family and any young person out there that do not want to see another Karla leaving us, start sending the emails tonight. And keep sending them until they listen, until there are concrete steps taken to ensure this does not happen anymore. The email address of each of the members in the health care committee at Stortinget can be found here:https://www.stortinget.no/…/Komi…/Helse–og-omsorgskomiteen/. And the email address to Bent Høie is (write To Bent Høie at the top of the email). Let us not accept another Karla dying. Please send those emails and let us ensure this never happens again.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

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