Week 2 - Trying to get out hands on Nivolumab

Written by Dyanne Soraas

Second week in the war on cancer has passed. Some highlights:
Monday: Good meeting with Aleris (private oncology clinic). But they won’t give nivolumab as it still is “off label”. Afraid of bad publicity and competing doctors complaining to government authorities. The doctor thinks it is the right drug to try. But board decision to not prescribe drugs “off label”. Don’t count on private enterprise to save you.
Tuesday: Ullevål hospital says “no” to nivolumab. They are out of stock and even if they had it wouldn’t do it as it is outside of protocol. What is up with disregarding the latest research and insisting on following a protocol that you know leads to certain death? Don’t count on big government to save you.
Wednesday: Our nivolumab supply option in Barcelona also looks a bit shaky. Need to look for back-up solutions.
Thursday: Planning radiation at Ullevål. Radiation treatment will start on Monday 14th September. Ullevål discovered growing, life threatning tumor in my wife’s lung on 12th August. One month later they will get around to treat it. Of course, if you assume the patient is dying and only consider the treatment “palliative”, there is no reason to rush. We look into going to Lisbon for radiation treatment, but discard it in the end.
Friday: Two new nivolumab supply options have been established: Stavanger and Vienna. Some confusion as we need to decide where to go. Anyway, looks like we will be medical tourists next week as well. Friday beer: Sierra Nevada Pale Ale.
Thanks to Håvard (in-house pharmacist), Jon Espen (in-house radiologist), brother Arne (in-house doctor) and my partner in medical tourism, Dyanne.

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