Week 214: 13 brain mets all shrunk or gone due to pulsed afatinib!

Written by Lars Haakon Soraas

Week 214 in the war on lung cancer has passed. After a lot of bad news, we finally got some really good news. Here goes:

  • We got the results of the MRI scan of the brain. On the last scan, in August, 13 new brain mets had appeared. The new scan showed that all of these had either shrunk or gone. When you are fearing being told the 13 brain mets had turned into 30, and then you are told all 13 had in fact shrunk or disappeared, well… we were pretty ecstatic.
  • Not all is rosy in the brain, however. The brain MRI showed there were two new metastasis. They are both small (largest is 3 mm) and the plan is to radiate them both using stereotactic radiation. 2 brain mets can be radiated. Radiating 13 is much more challenging.
  • We also got the results of the CT scan. This showed there is some, luckily slow, growth in the lungs. In the liver there is, unfortunately, a couple of new metastasis and a couple of existing ones have grown.
  • We also got the results of the latest tumor marker measurements. As we have not tested so frequently as before, the charts shown below are not so granular. However, it is clear CEA is rising again and NSE seems to already be skyrocketing, indicating the chemo infusion Dyanne got in August is not as effective as the previous chemo treatments.
  • To combat progression in the liver, lungs, and also to try to avoid more brain mets, Dyanne this week got treatment with a new combination of chemo drugs. Before she has gotten carboplatin and etoposide, this week she got carboplatin and gemcitabine. The hope is that this will be more effective. We are also planning to do the chemo treatments more often than before. In the past she got chemo once every 2-3 months. Now we are planning to test a weekly schedule. The doses will then, of course, be much reduced.
  • The chemo, despite the reduced dose, gave a lot of fatigue. Hopefully this is a sign that it is working.
  • A couple of weeks ago Dyanne started having some pain in the left hip. The pain then got better, but today it is again very painful. We suspect it is a metastasis causing this and hope to get the area radiated quickly.

Why did the brain mets shrink? The only logical explanation we can see is that the pulsed afatinib (150-200 mg taken once per week), which we described in the previous post, has worked. And it seems to have worked much better than we dared hope. I would like to mention here that there is another caregiver/patient advocate who deserves a special thanks for having suggested we try the pulsed afatinib. His name is Jo Monsen and a couple of years ago he sadly lost his brother-in-law, Vlad, to the same type of lung cancer Dyanne has. Vlad, just like Dyanne, had brain metastasis that were growing while he was being treated with osimertinib. However, when he started pulsed afatinib they stopped growing. Jo has, convincingly, suggested to us that this was worth trying in Dyanne’s case as well. And, as the story goes, Dyanne ended up trying it – and it worked. So, Jo Monsen: THANK YOU! You mean a lot more to many more people than you think!


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