Weeks 177 & 178: falling tumor markers, neutropenia and dog medicine

Written by Lars Haakon Soraas

Weeks 177 and 178 in the war on lung cancer have passed. Here are the highlights:

  • Dyanne has recovered well from the delirium episode described in our last post.
  • Dyanne has been quite fatigued and has not felt great the past couple of weeks. She has also lost some weight. The reasons can be several, but it seems now things are, slowly, going in the right direction again.
  • She has had a low level of white blood cells, so called neutropenia. This is a common side effect of chemotherapy, and, from what we have read, seems to be happening more often in East Asians than Caucasians (see section on East Asians in this article).  The lowest level of neutrophils we have measured (on 10th January) was 0.5. The normal range is 1.5-7.3.  The risk of having low neutrophils is that the body is less able to fight off infections. Infections that the body normally will be able to rid itself of can suddenly become very serious, even fatal.
  • We continue to track the tumor markers CEA and NSE closely. CEA has continued to fall nicely and the latest reading was 14 (normal level is less than 3 or so). NSE is down to the  normal range already. At the bottom of this post are charts showing how these two tumor markers have developed.
  • A couple of weeks ago Dyanne started a drug called fenbendazole. She also started curcumin and vitamin E at the same time. Fenbendazole is a dewormer used for animals (!). Why are we trying it? Well, the explanation is basically given in this blog post by a cancer patient named Joe Tippens in the US: https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective. Dyanne has previously been on a drug called mebendazole, which is kind of a human “cousin” of fenbendazole. Mebendazole is part of the treatment protocol of Care Oncology Clinic in London protocol and is being tested in trials in e.g. glioblastoma. Mebendazole obviously didn’t cure Dyanne, but maybe fenbendazole is a bit different. Here is a nice blog post about the drug: https://www.cancertreatmentsresearch.com/fenbendazole/. We have tried to do as good due diligence as we can on fenbendazole and ended up concluding it probably is a low risk bet to place. I.e. the risks of side effects and interactions with other treatment seems low. The upside is, of course, very hard to say anything meaningful about. So far all we can say is that the side effects appear minimal.
  • Dyanne did a CT scan this past week and we should get the results on Friday this coming week. She is also doing an MR scan tomorrow and we hope we can also get organized a PET scan.

In other news, I should mention that we are trying to exploit to the fullest all the sequencing data that has been generated from Dyanne’s tumor tissue. We have had two independent groups analyze her data to try to predict which drugs may be effective. I guess it is fair to say that such approaches are still immature and not proven to improve outcomes among patients. Still, in my mind there is little doubt that with improving tools and algorithms, it is now increasingly becoming possible to analyze in exceptional detail what is going on in a tumor and answer very fundamental questions, such as: What makes this particular tumor tick? And, with a good understanding of that, one can imagine that personalized recommendations for how to make the tumor “untick” could emerge. A good case study that illustrates this approach in a good way can be found here. As I keep thinking to myself these days: the truth is in there.

We are currently very much in a thinking and analyzing mode. The main question to answer is this: what should be our next step when it comes to treatment? The “standard” treatment would be to do more rounds of chemotherapy. Dyanne was actually scheduled to get another chemo infusion on 9th January. We have delayed this for various reason (the neutropenia actually probably would have prohibited her from getting it anyway), and are now considering a number of different treatments. Time will show what we land on.

Hope everyone has had a good weekend!

CEA from time of diagnosis until today

NSE: tumor markers that go up really ought to come down too

I am skiing, therefore I am. @Voldsløkka, Oslo

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