Week 16 in the war on cancer. The war was moved to Germany for this week. Definitely an interesting chapter in this saga.
On Wednesday we met with a clinic called IOZK in Cologne. They offer a dendritic cell vaccine with Newcastle Disease Virus. It sounds promising, especially if combined with e.g. nivolumab. But also expensive. They wanted €3000 for the initial blood test necessary. And treatment would cost around €30 000. What is the efficacy of this treatment? Hard to say…
On Thursday we met with Professor Hans Bojar in Dusseldorf. Fellow patient, a Frenchman living in London, Bernard, joined us for this meeting. As did my brother Arne, the great Niki from Barcelona and her boss Dr Rosell. Here is what Professor Bojar proposes (Arne or Niki can probably correct me if I got any of this wrong):
-whole genome sequencing of tumor cells AND normal cells to find out which genetic mutations are exclusively in the tumor
-gene expression analysis of tumor to find out which mutated genes are expressed on the tumor cells
-for genes which are both mutated and expressed: find out which have the best binding capability based on HLA class I and II haplotypes.
-based on all of this, make a selection of a handful of peptides that are 100% specific to Dyanne’s tumor and then manufactur these peptides synthetically
-inject these peptides into Dyanne together with some adjuvant that tells the body “danger, danger!”
-hope that the immune system reacts to these peptides and percieves them as dangerous foreign objects that need to be killed off
-hope that this process works as a vaccine and that the immune system then also understands that the cancer cells, which should express the same peptides as the ones that were injected, are also dangerous and need to be ejected
-hope that Dyanne’s immune system kills off the cancer
-go back to living life as normal
How many patients have done this before us? Less than 10. Has it worked? too early to say. Side effects? Seems limited. Cost? €20 000. Maybe (probably?) more if you the immune system builds tolerance against some of the peptides and you need to make new ones.
Theoretically, and scientifically, it sounds great. Will it work in practice? That is the €20 000 question…
On Friday we drove to Tübingen, further South in Germany to meet with a clinic (Unifontis) there that offers “whole tumor vaccines”. This process is apparently built on the work Dr Lana Kandalaft at the University of Pennsylvania has done on whole tumor vaccines in ovarian cancer. The same clinic also offers an aspirin type of treatment that apparently has produced very good results. Prices of both treatments are in the same range as the above mentioned treatments.
Friday night: back to Oslo. Too late for a beer.
Dyanne has started to have a bit of cough again, as well as sore mouth and throat. Don’t know if this is penumonitis that is back or something else. X-ray on Monday to try to find out. It may be that the scheduled nivolumab treatment in Barcelona next week must be put on hold. We trust the great Niki to guide us on this.
Thanks to Bernard, an amazing patient battling the same disease as us. He is a walking encyclopedia of EGFR mutated lung cancer and he is a pioneer trying out novel treatments and sharing his experiences so everyone can learn from his lung cancer rollercoaster. He is a great inspiration for us. And thanks to Arne, Niki and Dr Rosell for joining the meeting with Dr Bojar. And thanks to Anne Berit and Knut for babysitting Naomi.