Here is a summary of week 14 in the war on cancer.
Dyanne is phasing out the methylprednisolone, a drug which seems to have an effect not too unlike amphetamine. So she is a bit more tired again. But cough is gone and that is good.
Our doctors in Barcelona, including the relentless Niki, have assessed the situation and recommed that we stop immunotherapy and erlotinib and switch to a third generation tyrosine kinase inhibitor (AZD9291 or equivalent). The reason is two-fold: (1) the possible pneumonitis makes is potentially dangerous to continue with nivolumab and (2) they do don’t see any evidence that nivolumab is working.
Our oncologist here in Oslo called Dyanne on Thursday and said he could not see any change from the CT scan in August to the CT scan in November. This seems to contradict the assessment from Barcelona. We will meet him on Monday to try to get a clearer understanding of his reading of the CT scans. We have also briefly discussed with a professor at Cornell University (the professor who helped us put together the combination of immunotherapy and radiation that we have implemented) and she recommends to restart nivolumab and give it a bit more time before a decision is made. I guess we are at the knowledge frontier and no one can be certain what is right and wrong to do in this situation.
We have looked a bit more into personalized peptide vaccines and are planning a trip to Germany from 8-10th December. We will visit three clinics, one in Cologne, one in Dusseldorf and one in Tübingen.
We have also looked into the possibility of intercalating chemotherapy with a tyrosine kinase inhibitor (TKI; such as e.g. erlotinib, or probably better, afatinib or AZD9291). There are encouraging results form studies from Japan and Slovenia on this treatment strategy. This treatment concept also seems to be in the spirit of Dr Robert Gatenby, one of the few cancer researchers out there who actually has a well-thought-out strategy for how one (potentially) can defeat cancer (please do look up his work – very interesting).
One of the clinics we are visiting in Germany have said they can help us implement the concept of intercalating chemo and TKI, if we would wish to go down that way. The great private clinic here in Oslo, Aleris Helse – sykehus & medisinske sentre, have told us they cannot help. Apparently Germany has laws which allow doctors to offer experimental treatments to consenting patients in an effort to try to save their lives. In Norway, regulation, or cowardice, seems to make this almost impossible.
Imagine if we would have a doctor here in Norway who said: “OK, this will be difficult, but I will do my very best. We will scan the research frontier together and look for the most promising treatments. We will try to implement some of these and we will track progress as dilligently as possible, and change course if necessary. We will be clever, rational and take risks if and when needed. The odds may not be great, but we will give our all.”
Imagine. Well, I guess we will not count on such imagination for saving Dyanne.
Thanks to Niki as always, thanks to brother Arne for doing research for us, thanks to Dr Kast Richard E in the US for being a pioneer, a researcher and a compassionate doctor that is willing to think rationally and intelligently about how to potentially fix non-small cell lung cancer. You are a great discussion partner to have. And thanks to my wonderful wife, Dyanne. You are the best.
Friday beer took place on Wednesday at Grisen and was Brooklyn East IPA.