Super ASK Patient: Dyanne and Lars Push Far Beyond Standard Lung Cancer Treatment

In March of 2015, Dyanne Søraas was diagnosed with stage IV non-small cell lung cancer (NSCLC). She was 30 years old and otherwise healthy. Dyanne and her husband, Lars, began to research potential treatment options. Standard treatment seemed to provide little hope, and they gradually decided they would need to think outside the box in order to maximize the time their family would have together.

Now, Dyanne is receiving the experimental drug Tagrisso on a compassionate use basis. She is also receiving a personalized vaccine to help her immune system fight her cancer.

To learn more about Dyanne and Lars’ lung cancer experience, I interviewed Lars via email.

Can you tell me a bit about Dyanne and your family?

Lars: Dyanne and I married in 2012. She was working as a high-flying consultant at the time, and I worked in business development in an industrial company. Dyanne was eventually tired of the business world and has since studied to become a teacher. She passed her last exam this spring. We have a daughter who is now 2 and a half years old.

Dyanne was diagnosed with stage IV EGFR-positive NSCLC in March of 2015. What was your initial treatment plan?

Lars: The initial treatment plan was Tarceva (erlotinib), which is a standard first-line therapy for EGFR-positive NSCLC patients. At the time of diagnosis, we knew virtually nothing about lung cancer, and even less about how it was treated. So in the beginning, we just “went with the flow.”

Dyanne and her daughter, Naomi Dyanne and her daughter, Naomi

You eventually decided to abandon the standard treatment path. What led to this decision?

Lars: After we got the diagnosis, we slowly, but steadily, started reading about lung cancer and possible treatment options. At the beginning, we thought there was no hope: even my brother, who is a doctor, seemed to be of the opinion that “we should just enjoy the last days together.” However, the more we researched, the more we started realizing that there are treatment possibilities out there that are worth trying and that, even if they were not yet approved or proven in phase 3 clinical trials, still had good scientific evidence to support them.

We also realized, gradually, that the university hospital here in Oslo that is treating Dyanne, did not really have any plan for Dyanne other than the “standard protocol” – which ultimately leads to the death of virtually all patients. They would, we realized, be of very little help in terms of finding and implementing promising, but not yet fully proven, treatments.

So by the time we experienced progression in August 2015, we had more knowledge about lung cancer and treatment options. We realized that if we wanted to try to survive this disease we needed to take “the spoon in our own hands,” (i.e., do things ourselves as opposed to leaving it to others), as we say here in Norway. The hospital here offered us stereotactic radiation of the growing spot or a trial where Dyanne would be randomized to either chemo or Tagrisso (osimertinib), as she had tested positive for the T790M resistance mutation. Although Tagrisso sounded like a good option, we did not like the idea of being randomized to chemo. Furthermore, Tagrisso alone gives patients only a temporary respite, the long term outlook is still bleak. Hence, we went for the option to radiate the growing lesion.

However, our plan was not to “only” go for radiation. We had read about the “abscopal” effect when radiation is combined with immunotherapy. We then discussed the idea of combining radiation with immunotherapy with a leading immunologist in London and also a leading radiologist in the U.S. Under their guidance, a plan was made for how to combine radiation and immunotherapy. The challenge was then to implement this. We managed to get the radiation done here in Oslo, but had to travel to Barcelona, Stavanger, and Vienna to get the immunotherapy part implemented.

Along with the combination of immunotherapy and radiation, Dyanne also continued erlotinib. Scans in September and October were fine, with no new lesions and existing lesions classified as stable. However, only the radiated lesion actually shrank in size.

In November, Dyanne developed a cough and pneumonitis was suspected. A CT scan confirmed something fishy was going on, and we had to stop immunotherapy. Dyanne also had to take two courses of methylprednisolone before she continued with “just” erlotinib. In January 2016, the scans unfortunately showed progression in both the lungs and the brain.

Discussing with our various doctors, a consensus emerged that osimertinib (Tagrisso) was the best option. A biopsy from August 2015 found that Dyanne had the T790M mutation and we hence had reason to be optimistic Tagrisso should help.

As it took some time to get started on Tagrisso, we also had the growing brain lesion radiated with stereotactic radiation.

Dyanne started Tagrisso in February 2016. Today, she is still on Tagrisso and we hope she will be able to remain on this drug for a long time. We are aware, however, that for patients with brain metastasis, the median PFS is only 8 months, and there is little reason to believe the will be any large group of long term survivors on this medicine alone. Hence, we have continued to explore other treatment options as well.

Dyanne Søraas Dyanne Søraas

Dyanne was able to receive Tagrisso on a compassionate use basis. How were you able to secure compassionate use?

Lars: Our oncologist here in Oslo offered us to participate in a trial they were running where this drug was offered. However, given the brief respite such targeted therapies are expected to provide, we were keen to avoid the limitations a trial would put on which other treatments we could pursue in parallel Having learned about compassionate use programs (Dyanne got nivolumab on compassionate use in the fall of 2015), we insisted on trying to get Tagrisso on compassionate use rather than in the trial. Our oncologist in the end agreed to this and the application to Astra Zeneca was successful in the end.

Dyanne is now participating in a personalized peptide vaccine project in Germany. What is this treatment and how did you find out about it?

Lars: The personalized peptide vaccine project Dyanne is part of in Germany is very interesting, and we are very grateful for being allowed to be a part of it. In short, a personalized cancer vaccine is prepared in the following way: (1) Whole exome sequencing of both tumor and normal tissue is performed to identify tumor-specific mutations; (2) Based on the identified mutations, a selection is then done to identify the associated neoantigens that are most likely to be immunogenic; (3) Finally, synthetic peptides are made to match these neoantigens. These peptides are then used in a vaccine. The idea is to trigger the immune system to attack cancer cells with any of the identified mutations. It is a bit science fiction, but many researchers seem to believe that vaccines targeting neoantigens can be a great way to treat cancer. Of course, it is definitely not proven in any phase 3 trials yet, but we are very hopeful that this treatment will help us beat the cancer.

The way we got into this project was a bit by luck. We visited a doctor in Vienna and he mentioned a lab in Germany that offered some testing that could be interesting. We contacted the lab and did the testing suggested. Following this, the CEO of the German lab asked us if we were interested in joining a personalized peptide vaccine project he was involved in. We had never heard about the concept before, and did quite a bit of due diligence on it. Eventually we decided it was worth a try. Since we decided to join the project in January, it seems like the research in this field of personalized cancer vaccines based on neoantigens has exploded. We hope the field continues to develop quickly so that researchers and doctors soon figure out how best to use such vaccines to treat cancer patients.

Why did you feel the personalized vaccine is Dyanne’s best current option, and how is it going so far?

Lars: We knew very little about personalized cancer vaccines when we first heard about the project. So we started reading, trying to understand how promising it was, potential side effects, interactions with other treatment and, of course, costs. Side effects seemed low, risk of interactions also seemed limited. The vaccine is not for free (around €20,000), but it is not an outrageous price. And then, most important, it seemed like such vaccines could, if you are lucky, induce a long term response, maybe even a cure. To help us investigate the vaccine, we actually also flew in my brother (who is a doctor) and a couple of our other doctors to meet the lab in Germany offering it. They were positive and we then decided to go for it.

Dyanne started the vaccine in June this year and get new injections every second week. A planned Elispot test in September will give us some initial indications of whether the vaccine is working or not. So far the treatment is tolerable with limited side effects.

How did you hear about Cancer Commons, and why did you reach out to our Chief Scientist Emma Shtivelman?

Lars: It was another caregiver for a patient who mentioned Cancer Commons and Emma to me. The initial reason for contacting Emma was actually to ask if she had any thoughts on whether it would be possible to use the novel CRISPR technology to develop any personalized cancer treatments for my wife. That was the start, anyway, but later we discussed a lot of other, and more realistic, topics.

Dyanne and her daughter, Naomi Dyanne and her daughter, Naomi

How has Emma helped you?

Lars: Emma has been of great help. She has a great overview of promising trials and treatment possibilities that are under development. She is great to discuss novel ideas with to try to understand how promising, or not, they are. This is one of the greatest challenges of patients who want to venture off the beaten track (i.e., do something else than just the “standard protocol”): which therapies to try out? There are literally hundreds, if not thousands, of different treatment options offered by a large range of clinics and doctors. Some are quacks and others are leading scientists and doctors. How to know what is quackery and what is backed by promising science? Emma is a great guide in this very challenging field for patients to navigate.

You seem to be incredibly involved in the treatment selection process for your wife. How are you able to navigate the complex cancer world?

Lars: I have studied engineering and finance and economics, and I have worked as a consultant, in a venture capital fund and with business development. And I have founded a website together with a couple of other guys. Even if I am not a doctor or a hardcore scientist, I do think my background has been helpful in navigating the complex world of cancer. To help us in this battle, I am also lucky to have a brother and a sister who are both doctors, as well as several friends who are doctors. And then there are people like Emma who are experts and great discussion partners.

At least as important as my background perhaps, I think is the fact that I have a very, very, very strong incentive to succeed in this battle. I have the most wonderful wife on the planet, and I fought very hard to win her over (she was a bit reluctant in the beginning…). When you are fighting for the life of your beloved wife, you don’t easily give up even if the medical world can sometimes seem both complex and vast. Furthermore, financially we are very privileged and this means I have been able to take unpaid leave from my job and now work on researching cancer treatments more or less full-time.

What advice would you give to patients (and their caregivers) who have received a diagnosis with a very poor prognosis?

Lars: First you have to make up your mind whether you want to fight for life, or throw in the towel. If you are happy to go six feet under, then go with the flow and enjoy your last days.

If you, however, would like to hang out with your spouse, kids, friends, grandkids, a few more years, then you must realize the following: most doctors and most regular hospitals neither have the incentive or the ability to help you in your battle. Most doctors/hospitals struggle to keep up to date with the “standard of care.” But following the standard of care is of no use when the standard of care ends six feet under.

So, once you realize that your assigned doctor/oncologist probably will be of limited help in your battle for life, then it is time to start looking for one, or several, doctors that can help you in your battle. The ideal doctor should be someone who is among the top researchers for your cancer type AND someone who has the willingness and ability to offer non-standard treatments. To illustrate this: even if your doctor is the “best” lung oncologist in the world, he or she will be of little help if they are only willing (or able) to prescribe the “standard of care” treatment. On the flip side, you don’t want to end up with a quack who willingly prescribes treatments regardless of the science. Finding doctors who fulfill both these criteria is, needless to say, quite difficult. But they do exist, so don’t give up until you find one.

Finally, it is important to keep in mind that to beat a disease like lung cancer or glioblastoma, you need to take some risks. As one of the doctors we consult usually tells us: dragons are not defeated by small weapons. If you really want to beat such a nasty disease, you need to consider doing multiple treatments/drugs at the same time or sequentially. Adding one or three supplements, and eating a bit more healthily, well, it may help, but it is very unlikely to be a sufficient intervention to get rid of the cancer.

Dyanne, Lars, and Naomi Dyanne, Lars, and Naomi

Is there anything else you’d like to tell me that I didn’t ask about?

Lars: Well, where to begin… I sometimes think of this poem by Dylan Thomas:

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

I think the algorithm that we, i.e., humankind, follow in our attempt to solve the puzzle of cancer is unbelievably stupid. Most advanced lung cancer patients, to take an example we know well, die without trying any innovative treatment. They are given the standard treatment and one of the things we know with great certainty is that this treatment takes virtually all patients six feet under – in a very short time. Most patients are buried within a year of the initial diagnosis. These patients are basically denied any hope of survival. Furthermore, their deaths do not bring humankind a millimeter closer to solving the cancer puzzle. I find this outrageous. It is so inefficient, so irrational, so cowardly and, importantly, deeply immoral. Denying people any hope of survival goes against the one of the most basic of human instincts: the survival instinct. It is, frankly, inhuman and that is why it is also immoral. I think future generations will look back at us and wonder, “What on earth were they thinking? How could they be so incredibly dumb?”

I hope we will be there the day the cancer puzzle is solved. I am really curious about what the solution will look like. Is it simple and similar for most cancer types? Or is it extremely complex and differs from cancer type to cancer type? Time will show, and I hope we will be there when it happens. It is so much more fun to be among the living than the dead. Especially when you are married to the most amazing wife there can be.

If you would like to follow our war on cancer, please visit our blog: alunglife.com.

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Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.