Niki was diagnosed with an extremely rare and very aggressive form of Malignant Melanoma in July 2019 after finding a small tumor. She had surgery to remove it the very same week. After a routine PET scan the next week, we discovered the cancer had also spread to the lymph nodes in her left groin, which meant that the cancer had progressed to Stage 3 very quickly. She immediately had a second surgery to do a full dissection of the lymphnodes. In September she began her first immunotherapy treatment injections.
In early October while getting some final scans before starting radiation, we found blood clots in the lungs and left leg, as well as some spots in the liver. Niki was immediately hospitalized. While in the hospital, a liver biopsy was done and we learned the cancer had metastasized to the liver, which now put us at Stage 4.
In November, she had to stop immunotherapy treatments due to ongoing high fevers, nausea, vomiting, aches, chills, etc, along with high liver enzyme levels. Another scan was done, and more tumors were found in the pelvis and upper abdomen. She has been on very high doses of Prednisone steroids since then to control the sickness and that, along with elevated liver enzyme readings, means that all of her treatments have been on hold while they try to get everything else under control.
Then in early December we found out that it had also spread to her brain. She had Cyberknife radiation treatment on her brain just before Christmas.
We have been going to both Minnesota Oncology in the Twin Cities and the Mayo Clinic in Rochester who coordinate her treatment plan. However, this is such an extremely rare and extremely aggressive form of cancer there is not much known on how to treat this.
We received the results of some recent scans and the cancer has now spread to her lungs and the tumors in her pelvis and liver have grown as well. She will be starting chemotherapy 1/9/20 and will continue to taper down her dosage of prednisone (steroids), as she can tolerate it, and will restart immunotherapy when she is able to get down to a safe level.