Week 225: Can you do us a small favour?

Written by Lars Haakon Soraas
15
Dec

We are going to ask for some help. It will only take you a minute or two. Please see the heading ***HELP REQUESTED*** below for details on how you can help. But first, here is an update from week 225 in the war on lung cancer:

  • On Sunday a week ago Dyanne had a fever of around 39.5 degrees Celsius. It was the third night in a row she had a fever, but the two preceding days the fever had not been so high. We went to the local hospital here and she was admitted there. She got some iv fluid, antibiotics and ended up staying for 2 nights. We never got to the bottom of what caused the fever. Was it some infection? The cancer? Something else? We don’t know. But antibiotics seemed to help a bit at least.
  • On Wednesday and Thursday this week Dyanne got radiation to the liver and the lungs. The whole liver was radiated both days with 4 Gy, and one spot in the lungs was radiated on Thursday with 3 Gy. The main purpose of the lung treatment was to try to reduce the annoying cough that Dyanne has had. The purpose of the liver radiation is to stop, or at least break, the rapidly growing cancer there.
  • The radiation caused quite severe fatigue and also some nausea. On top of this she has had constipation that likely is due to the oxycodone (morphine variant) that she has taken for the cough. This week Dyanne has hence not been in very good shape (first the hospital, then radiation…). On Friday she was scheduled to have one more round of radiation of the liver, but we have delayed this to tomorrow instead (when she is also scheduled to have radiation in the lung).
  • We have established contact with a palliative care doctor at the local hospital here. He has helped adjust some of Dyanne’s “supportive medications” (i.e. the medicines not aimed at treating the cancer but aimed at alleviating symptoms and side effects). This seems to have helped. In particular, doing codein instead of oxycodone seems to have helped against the cough.
  • Today it seems the cough is more or less under control, side effects from radiation seem to have largely gone away and constipation seems ok. So today has, thankfully, been a quite good day.

***HELP REQUESTED***

Then to the help we would like to ask from anyone who reads this update. As some will know, we were on the verge of travelling to New York to participate in a trial testing a drug called NC318. Unfortunately the trip had to be cancelled last minute. We still do believe, however, that this NC318 drug can be a good treatment for Dyanne. The company behind it, NextCure, has reported quite promising results from a study they have done. And we believe Dyanne has a high level of expression of the protein targeted by the drug (Siglec-15). Finally, the drug seems to have very tolerable side effects and, importantly, it is an immunotherapy. Thus, if it works, there is reason to believe the effect may be long-lasting.

Even though going to New York is not possible, we are thus still very keen on getting hold of the drug to see if it can help Dyanne. We have investigated if it can be possible to get the drug sent to Norway. We have applied to the Norwegian equivalent of FDA to ask if they would allow the importation of it and the use of the drug in Dyanne’s case. And they have agreed. What we now need is for NextCure to agree to send the drug. We have asked them if they are willing to do this, but have not gotten a clear yes or no yet.

So, what can you do? We ask everyone who reads this and who want to help to help petition the company to try to convince them send NC318 to Norway for Dyanne to try it. There may not be much upside for them to ship the drug to Norway, and it may be a hassle to do it. For us, however, the upside is, if the drug works, huge. To petition the company please send a direct email to the Chief Medical Officer of NextCure. His name is Dr Kevin Heller and his email is hellerk@nextcure.com. The email need not be long. Just mention Dyanne’s name and the request that they have received to send NC318 to her in Norway. Encourage them to approve the request and send the drug as soon as possible. If they agree, it could be a once-in-a-lifetime Christmas present for us.

Hope everyone has had a good week. At least a better week than what we have had 🙂

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