Due to holidays, treatments and travelling, we have not been so good at updating the blog lately. But here is the update from the past 6 weeks:
- To recap, in early June Dyanne got a new round of chemo (carboplatin and etoposide). She got 90% of the “normal” dose and, as described in the previous post, we saw tumor markers declining following the chemo.
- Given that we have been unsuccessful in our previous attempts at controlling the cancer between the chemo rounds with either repurposed or targeted drugs, we decided to this time go for immunotherapy. Given that we previously have tried various forms of immunotherapy, without it curing Dyanne, we this time wanted to do immunotherapy as much and as intensely as we dared. What we have done is described in the below bullet points.
- Over the past months, we have developed a new version of a personalized vaccine for Dyanne. The vaccine is is a so-called neoantigen vaccine, based on exome sequencing of tumor tissue extracted in a biopsy in October 2018. The vaccine was ready in the end of June and Dyanne then had it injected together with two adjuvants: XS15 and Montanide ISA 51. XS15 is a new, seemingly potent, adjuvant that is being developed in Tübingen, Germany. Montanide ISA 51 is a fairly established adjuvant that has been tested in many trials. The injections were, luckily, uneventful. Many has helped us with developing the vaccine, but I would like to send a special thank you to Prof Hans Bojar in Düsseldorf and EpiVax in the US. Both have been instrumental in the vaccine development.
- We then decided to travel to Vienna to get “fever treatment” at the clinic of Dr Ralf Kleef. Dr Kleef has developed a combination therapy that consists of applying low doses of nivolumab and ipilimumab, some hyperthermia sessions and, importantly, one week of fever treatment. Prior to travelling to Vienna, Dyanne got an infusion of pembrolizumab in Norway. Furthermore, to reduce the length of the stay in Vienna and also the costs, we decided to only do the fever treatment in Vienna. Fever is induced by using interleukin 2 (IL-2) and the treatment is done in what best can be described as a mix of a nice holiday resort and an intensive care unit. We stayed in Vienna and Dyanne got fevers 4 nights in a row (from Monday to Thursday night). Fevers reached 39.5-40 degrees Celsius at the peak and were gone in the morning. Having such high fever is, of course, uncomfortable. However, Dyanne tolerated the treatment surprisingly well and during the days she was mostly in good shape. A special thanks to the professional and good staff at the clinic who took care of Dyanne 24/7.
- Prior to travelling to Vienna Dyanne had a port-a-cath installed. A special thanks to LHL Hospital outside Oslo for helping out with this on short notice.
- Following the fever treatment in Vienna, we had one week of proper holiday in Båstad, Sweden.
- Dyanne has previously done various forms of local treatments. We believe local treatments can help control specific tumors, and we believe smart local treatments also has the potential to control the cancer systemically. Based on this we decided to have two tumors ablated: the main lesion in the lung and a lesion in the liver. These were treated with cryoablation at a hospital in Spain. Furthermore, immunotherapy was injected into the same two lesions and also into a metastasis on the neck. In connection with this, Dyanne also got low doses of nivolumab and ipilimumab systemically (intravenously).
- We are now back in Båstad and are spending some days here. Following the treatment in Spain, Dyanne has had some diarrhea (probably due to ipilimumab), cough, fatigue and, somewhat strangely, a low fever (around 38 degrees) that has recurred every night, but is then gone in the morning. What to make of this fever, we don’t know.
- While in Spain, prior to the treatments, Dyanne had a PET scan done. This was used to decide which tumors to treat. The scan showed no major surprises, but showed that the liver and lung lesions that were treated were lighting up (indicating active cancer).
Readers of this blog know that we regularly track two tumor markers that can be measured from blood. How have these developed during all of this treatment? At the bottom of this post the charts are pasted in. Some comments on the charts are necessary:
- The last red dot on each of the charts indicate when chemo was given in early June.
- Some of the CEA measurements are done at different laboratories than the one we usually use in Oslo. Different laboratories can sometimes have slightly different results depending on how the instruments are calibrated. We should thus be cautious with interpreting these measurements and they have been marked with grey in the chart.
- As can be seen from the CEA chart, there was a nice decline following chemo. Then there is a small jump again. What to make of this? We don’t know.
- For NSE we can also see that there is a nice decline following chemo. Then there is a jump that occurred after the fever treatment in Vienna, and then there is a small decline again.
- Tumor markers like CEA and NSE can sometimes show transient spikes shortly after some types of treatments. Whether the increases we are seeing are due to such transient spikes, or something else, we don’t know.
What next? We are not sure. We may want to do some more fever treatment, as we believe that can be synergistic with the cryoablation and the intratumoral injections, and also the vaccine. Furthermore, we are looking at a trial in the US (New York) that looks very interesting. Before we make any decisions, however, Dyanne first needs to recover a bit more from the latest treatments.
Finally, to end on a happy and summerly note: our daughter has learned to swim this summer 🙂 We hope everyone is having a splendid summer!