35 Year Old with Stage IV Melanoma

I am a 35 year-old from San Diego and I was diagnosed with stage IV melanoma with tumors in my lungs, liver, adrenal gland, pancreas, kidney, bone and brain in July of 2021. By the time of my diagnosis I was already quite symptomatic (not only do I have tumors in so many locations, but I also have a high tumor burden in my lungs and liver) with nightly fevers and soaking night sweats, pain in my back and ribcage, and fluid retention in my abdomen. I received my first dose of Ipi/Nivo 2 days after my diagnosis and my second dose in early August. By mid August I had no improvements and my pain and fluid retention was only increasing. I had zero strength or energy and needed help with everyday tasks. I also had a follow up brain MRI (5 weeks after my first) which showed the lesions in my brain had grown and that I had many new lesions. At this time my oncologist had sequencing done for a BRAF mutation, which I am positive for. The day the results came back I switched treatment to BRAF/MEK inhibitors and within 2 days started having noticeable improvements in my level of pain and started losing fluid. The day before I started the BRAF/MEK inhibitors I developed a rash on on my lower legs and stomach, which my oncologist thinks may have been the beginning of a response to the immunotherapy, but as my condition was declining rapidly, we all agreed that switching to BRAF/MEK inhibitors would give me some relief and hopefully returning to immunotherapy once I was in better health would give me a chance for a good response. I was on BRAF/MEK inhibitors for 8 weeks and I regained strength, lost all of the fluid and really felt almost “normal” by the end. I had imaging the last week of October which showed that the larger mets in my brain had all shrunk by roughly 75% and that the new mets that were discovered in August had disappeared. The CT scans showed that larger tumors in my lungs, liver and other organs had shrunk by 50% and smaller mets were gone. The bone disease is harder to monitor, but based on the fact that my pain level is zero, my oncologist thinks that my bones are healing as well. I had a third infusion of Ipi/Nivo the last week of October and now I wait to see if I will respond or start having symptoms again. The night of my infusion and the day after I had flu-like symptoms and a fever which gives me some hope that I may respond. Since then I have had itchy skin and small muscle twitches, which are both symptoms I experienced at the beginning of the BRAF/MEK inhibitors as well. I have also continued to have hair loss, which started a week or two into the BRAF/MEK treatment. 

Sorry for the long post, but I wanted to share my story in hopes of connecting with others surviving and fighting this terrible disease. I am so grateful to be feeling so well right now despite still having so much disease in my body. This entire experience has been such a roller coaster that of course has been both physically and mentally draining. I went from running 4 miles on June first and feeling quite normal to being almost completely bed ridden and in indescribable pain by the end of August. The daily anxiety of wondering if I will respond to the new rounds of immunotherapy is so tough to handle. I have a wonderful support system with my husband and family nearby, but would love to connect with others that can relate to my experience.

-Grace