Ragnfrid

Hi, my name is Ragnfrid. I am a small cell ovarian cancer, hyper hypercalcemic type with a gene defect in SMARCA4. I was diagnosed in 2018 in Norway. The doctors had no experience with this cancer. 

I had an operation and chemotherapy, I got relapsed very fast after treatment, the prognosis was bad. No chemotherapy had effect. I got more operations, but the cancer still grew. I got radiation, it took the tumor, but it grew new tumors at the same time around my body. I was given up by the public health care in 2021. Then in 2021 I was in a clinical trial where a gene tested my tumor. I got the message that there was no able treatment for me. But the genetic team in Norway said I could contact the biobank in Canada, so I did. I sent blood samples to Canada and information about my tumor with a very good guidance from the team there. I got in contact with the Small Cell Ovarian Cancer Foundation and a specialist doctor in United States. My family friends and the city I live in, started a fund raising so I could try immune immunotherapy. Information about immunotherapy and my rare cancer I found when I got in contact with the team in Canada and doctors in USA. 

I had to do this private. I have been on immunotherapy for almost three years now and the cancer has been stable. I hope this small gesture will be for help for other patients in the future and that it will be more research on this rare aggressive cancer who mostly attack young patients. Thank you.