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Novartis Know Now: Knowing Rose’s BRAF Status Helped Her Find the Best Course of Treatment
Meet Rose Manbachi – a melanoma survivor who benefited from knowing her BRAF status early on, changing the course of treatment. Learn more about Rose’s story and why it was important for her to Know Now and get tested for the BRAF gene mutation in her guest blog.
I am especially grateful to my melanoma team and all the scientists that work so diligently to discover tests to identify BRAF mutations and target medications to treat melanoma.
It’s hard for me to believe that I am sitting here eight years after my diagnosis of metastatic melanoma, not only surviving but thriving and living each day to its fullest. My name is Rose Manbachi and I was diagnosed with stage IIIC melanoma, which quickly progressed to stage IV in March 2012. At the time of my diagnosis, there were many clinical trials for melanoma but not many treatment options that were successful for stage IV melanoma patients.
I did not have the typical presentation that most people experience as I never had any noticeable abnormal skin lesions. I noticed swelling in my left foot and sought medical care from my family doctor thinking it was arthritis or some other medical condition. I had blood work done initially and an ultrasound of my left leg and foot. While having the ultrasound done, the doctor came in and said my lymph nodes in my left groin are really enlarged and he was going to send me directly for a needle biopsy. My head was spinning; being a nurse myself, I knew clearly that enlarged lymph nodes could possibly mean a cancer diagnosis. I thought this could not be happening to me since I had always done all my preventive care and was a healthy 53-year-old. My initial biopsy came back inconclusive. After a second biopsy, I received the news that I had advanced melanoma in my lymph nodes and must be seen as soon as possible by an oncologist.
This all came as a surprise to me! I am fair skinned and of Irish descent with many freckles all over my body, but I was well educated about the dangers of the sun. I regularly applied sunscreen and never used a tanning bed. I performed regular self-skin checks and was examined several times by a dermatologist due to a family history of skin cancer and two sisters with early stage melanoma.
I lived in a small community with my husband and daughter and was not close to any major academic centers, so following my diagnosis I went to Penn State Hershey Cancer Institute where I met an amazing melanoma team. After much testing, including a PET scan and MRI of my brain, it was determined my primary site would remain unknown. I had surgery in April 2012 to remove the lymph nodes in my groin that were involved along with other surrounding nodes; a total of 17 lymph nodes were removed.
My oncologist was amazing and kept me informed every step of the way during my cancer journey. Prior to my cancer diagnosis, I worked as a pediatric nurse practitioner caring for children with heart problems. Although I was in the medical field, I knew very little about cancer. I went from being a caregiver to needing care myself. My oncologist explained to me that my melanoma appeared very aggressive and although surgery removed the nodes it was very likely to return. He immediately explained all the treatment options to my husband, myself and my daughter.
At my initial visit, my oncologist explained the importance of obtaining a test to see if I had a BRAF mutation so that we could outline my treatment more specifically. The results of my test showed I had a BRAF mutation which was great news since there are medications specifically targeted for patients with a BRAF mutation. Being aware of my BRAF status gave me and my family hope and more treatment options. My biggest fear during my cancer journey was that we would run out of treatment options. Now knowing that I was BRAF positive, I knew there were medications that could be very beneficial in treating my type of melanoma.
After surgery, I was involved in a clinical trial, but my melanoma continued to spread. I was taken out of the trial and started on immunotherapy in addition to a BRAF inhibitor and radiation all at the same time. Finally, in February 2013, I responded to treatment and my PET scan showed no evidence of disease (NED). What an amazing day for me, my family and my entire melanoma team. I will be forever grateful to all my family members and friends who supported me through a very challenging time. I am especially grateful to my melanoma team and all the scientists that work so diligently to discover tests to identify BRAF mutations and target medications to treat melanoma.
I share my story openly so that it may help other cancer patients and families and increase the awareness of melanoma. I firmly believe that knowledge is power and by sharing my story, I hope to empower other cancer patients and give them hope. Advocacy is such an important issue for all cancer patients, and I encourage patients to write their own story, be their own advocate, never give up and always have hope. I have been so inspired by other patients/families I met in the community and through the Melanoma Research Foundation. I hope my story has inspired you as well.