I am the caregiver of my husband, Guillaume, who was diagnosed with metastatic colon cancer in January 2021 at 43. We have two children who are now 2 and 4 years old.

My husband was diagnosed in an emergency room, even though he had only had a few stomach aches two months prior to that day. On January 1, 2021, in 24 hours, our lives changed.

The surgeon who operated on Guillaume for an obstruction told me that my husband had stage IV colon cancer with peritoneal metastases.

On January 2, I began my search to understand the disease and find the best doctors for him. I have been searching ever since.

The prognosis, already quite worrying at the time of the diagnosis, turned out to be catastrophic two months later when we received the results of the anatomopathological analysis of the primary tumour: Guillaume’s tumour was carrying the BRAFV600E mutation with an MSS (microsatellite stability) status.

The BRAFV600E mutation is present in 8-10% of patients with metastatic colorectal cancer and is recognised as a poor prognostic factor with a median overall survival of less than 20 months¹.

Treatments and the importance of clinical trials for patients with the BRAFV600E mutation

Guillaume received standard care for his first two lines of treatment, with an average duration of response of 4 months.

Thanks to the knowledge gained individually, for the 3rd line of treatment, and in the COLONTOWN community, we knew that Guillaume needed to enter a clinical trial. We found a relevant phase I trial (combination of MAPK pathway inhibitors) in Belgium. Thanks to partnerships between European countries, there was no cost to us. This trial allowed my husband to be stable for 5.5 months.

For the 4th line, we took advice from France and internationally. The choice of a FOLFIRI + aflibercept was made. My husband is still stable on this line of treatment for the moment. We are looking for the next one, which will undoubtedly be a clinical trial or a compassionate use application.

What we have learned so far

– Being a true stakeholder in your disease or your loved one’s illness by developing in-depth knowledge really does lead to better care options, of which early phase clinical trials are one.

– If you don’t get what you think is best, go elsewhere, get other opinions, and insist.

– Patient organisations like COLONTOWN are beneficial in this regard.

– Ask for all possible help: medical (in all fields), administrative, family, friends, and professional. Cancer changes our life. Only an adaptation at all levels allows us not to sink.

– Hope for the best but always prepare for the worst so that you are not as helpless when the worst happens.

I am now trying to help other patients navigate this challenging battle through my involvement in several international, European, and French associations.

¹ Mauri & al. (2021). The Evolutionary Landscape of Treatment for BRAF^V600E Mutant Metastatic Colorectal Cancer. Cancers. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7795863/