Marine Tullet: my brother’s story

After her brother received a terminal diagnosis, Marine and her family decided to investigate the world of clinical trials, compassionate use and what they can offer. She posted on LinkedIn, tagging pharmaceutical companies with a post that gained over four million views. She tells more here…

In February 2022, my brother was diagnosed with acute myeloid leukemia (AML) with a TP53 mutation and extramedullary disease.

A few days before his diagnosis, he experienced severe back pain, fatigue, petechiae and brown spots on his chest – something we later found out to be leukaemia cells. After consulting an osteopath and a GP, a blood test was ordered. A few hours later, the doctor called him telling him to go to the emergency room at the hospital. The next day he was diagnosed with AML.

Just five days after the diagnosis, the first round of chemotherapy commenced. We knew that multiple rounds of chemotherapy and a potential bone marrow transplant were in store. One of the peculiarities of leukaemia is the isolation of both patients and their families. In the corridors, we didn’t see anyone apart from a few nurses and doctors. During each round of chemotherapy, my brother had to stay sterile in a room for at least five weeks. 

A month and a half passed, and the results after the first round of chemotherapy indicated that my brother’s marrow was clean and that they had managed to reduce the rate of leukaemia below five per cent. However, the spots on his chest began to return, meaning the leukaemia was still active and progressing. As a result, the second round of chemotherapy was not a consolidation chemotherapy as planned, but in fact a salvation one. 

My brother went through four intensive chemotherapy sessions like this. He unfortunately relapsed during the two weeks of rest imposed between each chemotherapy.

The most difficult relapse was after the third chemotherapy where he had severe facial paralysis and lymph nodes. Examinations were carried out to confirm or refute possible neuro-meningeal invasion, which was never explicitly proven by exams. It was also a difficult relapse because the doctors told us that he had no more possible treatments. 

For a week we were all at home thinking there were no more options. After insisting with the doctors (and because my brother was young), the doctors finally offered a fourth chemotherapy line.

Even after the fourth chemotherapy, there was a relapse, so it was decided my brother would have a bone marrow transplant. We knew there was little chance it would work, but we had to try. It was our last chance. 

The transplant took place on the 25th of September and went well. Two weeks later, he was able to go out and I put him up in my apartment. However, one-month post-transplant, the disease unfortunately returned. My brother didn’t tell me at first, but I saw his behaviour change; he became worried and sad. We then understood that the leukaemia had relapsed, and quickly. 

Doctors stopped immunosuppressants in a short time to cause graft versus host disease (GvHD). The objective was to allow the graft to take up more space and establish itself in the body. At the same time, my brother had outpatient chemotherapy; more palliative than curative.

I began reading research articles and looking for clinical trials, something I had heard about upon this journey. The darkest period began. In mid-November, I took sick leave so I could tirelessly research clinical trials.

I had a range of doctors on the phone or by email in France, but also in Germany, Spain, Italy, and the United States. We had a few leads, I sent my brother’s file but nothing was ever concrete. My brother’s case was not of interest, for reasons such as the mutation or that the transplant was less than three years old.

Just before Christmas, my brother’s condition continued to deteriorate, so we made a LinkedIn post. I posted it on my profile tagging the pharmaceutical companies where I had seen interesting clinical trials. The post did well; it got four million views and I received more than 1,000 emails. Our research was able to broaden. 

We had a strong lead for Magrolimab developed by Gilead Science. From the beginning of January to mid-February, there were discussions with Gilead to get the drug in compassionate use. A patient association helped me a lot in the negotiation. We had three refusals with unclear reasons before finally having a positive answer from Gilead which they wanted to remain secret. Unfortunately, they gave a response too late when my brother was already in sedation.

The problem with compassionate care is that the legislation is specific to each country and the access process is not clear. In addition, in France, there are commitments that the laboratory must make which risk impacting the planned development of its drugs.

At the same time as this fight, my brother was waging an even more intense one against his leukaemia. At the end of December, he had a severe stomach infection which forced him to be re-hospitalised. His condition was critical according to doctors. Unfortunately, the infection could never really be controlled. At the end of January, we were lucky enough to have him at home for a week; a very difficult week but one where the four of us were able to share moments. 

His condition became worse and my brother was placed in palliative care on the 10th of February, 2023. On the 16th of February, I lost my brother.

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