Brain cancer research, developing a new medicine

My life and that of my family has taken another unexpected turn in April 2020!

We are a Dutch family of four: Peter and Mirna (45+ years), and our teen twin boys Nicholas and Alexander. In 2008, Mirna was diagnosed with colon cancer. Luckily, she cured, and I honestly thought that this had been our share of bad luck in our lives.

But nothing less was true. On 2 April 2020, after having a seizure, I was diagnosed with a big brain tumour on my left frontal lobe. At the time, we were living in Montenegro for my job, but we decided that a temporary return to the Netherlands was needed, so I could get medical treatment. 

I would first like to explain why we want to raise funds for our research on oligodendrogliomas.

What is the fundraising goal? A cure!

The research laboratory of the Erasmus MC, Rotterdam, the Netherlands, is one of the leading organizations when it comes to brain cancer research. Prof. Dr. M.J. van den Bent and Dr. P.J. French have written a research proposal which could result in a potential ground breaking cure for oligodendrogliomas and perhaps also other types of cancer. 

The aim of the research is to show the correlation between types of molecular mutations and survival in oligodendrogliomas. Also, they want to investigate which biological processes are affected by differences in certain molecular concentrations. Finally, they plan to identify certain inhibitors of these molecules. To this end, a simple assay has to be developed that can be used in a large-scale screen. A large-scale screen can then take place in a special drug screening centre in order to identify a potentially curing compound, which is the functional molecule of a potential treatment.  All quite technical, but in the end the goal is to find a cure against oligodendrogliomas, and potentially also other types of cancer. More information can be found on our dedicated website:
Funding for oligodendroglioma research.

My treatment?

My treatment was done with a craniotomy (awake surgery) which resulted in the removal of 60% of the tumour. The tissue confirmed a diagnosis being anaplastic oligodendroglioma grade III. I am currently taking PCV-chemotherapy.  My prognosis is unclear, but not good. Although the chemo is hopefully stopping further growth of the tumour or even reducing it's size a bit, in the end there is simply no cure for this cancer.

Rare cancer types

Oligodendrogliomas, compared to other types of cancer, are quite rare. Sadly so, the result is that national and international research budgets are mainly focused on common cancers, such as breast and lung cancer. For these, some great achievements have been made with much better survival, which is great! It makes us hopeful that we can reach that too. 

The survival of people with a primary brain cancer (it originates in the brain) is only 1%. Not that long ago brain cancer was also identified as the most deadly disease under children. We as a family are not able to manage this without your financial support.

The book!

We wrote a book about our experiences: First you, then me. Colon cancer + IVF + brain tumour =  live². We openly tell our story and how we coped with our illness. The title explains a lot: colon cancer (of my wife, with an incidence of 1:1,000,000) + desire to have children (IVF) + brain tumour. 

What helped us and what didn't? Also our boys will share their views and emotions. The handy practical tips may offer some guidance in finding the most suitable medical care, explain the ins and outs around hospitalization, and share experiences about dealing with work and those around you. The book is written in Dutch ("Eerst jij, toen ik"), and in the process of being translated into English; "First you, then me" will be available in paperback and possibly also as an e-book. All the proceeds of our book will go to oligodendroglioma research. Both of the books can be ordered at the end of January 2021. Check our website for updates.

So, what can we do about that? Fundraising!

There are two ways in which we are planning to raise funds:

1.       Fundraising via this GoFundMe page. Please make your donations! It doesn't matter how small; every penny counts... These funds go from the GoFundMe organization straight into an account at Erasmus MC, specifically dedicated for this research project.

2.       The profits from our book “First you, then me”. By the end of January 2021, the book can be ordered via our website. We are currently in the set-up process of the dedicated foundation for this research project: Oligodendroglioma Foundation, with a dedicated bank account. All funds will then be processed to the above account at Erasmus MC. Financial overviews will be posted on our website.

Final

We are going to need your help! Both for fundraising and to create awareness among your network. We will ask for media attention, connect with patient groups, reach out to the health councils, and many more organizations.

Please share with your network if you support what we aiming to do! Also, share with us relevant contacts in media, health councils, etc.

So, please help us to raise funding so the lab can find a cure for Peter, and many other brain cancer patients. Thank you!