donna conn

Haven’t posted for awhile, seems it’s never ending. I finally got relief from the symptoms I had taking tafinlar/mekinist when my Dr prescribed a daily dose of 10 mg of prednisone. So I could finally take the medication that is supposed to help cure me. I went back to MDANDERSON and now the PET scan is showing a reduction in the pelvic node, but has also picked up a suspicious spot on my spleen which was not picked up in December. I’m getting a CT in the morning and then possibly a biopsy, the Dr had wanted to go directly to the biopsy, but I hate to do that if it doesn’t look like cancer. Any thoughts or ideas? Its just strange that one area has shrunk while another that did not show up in December is now showing metabolic activity.

I had melanoma removed from my toe as well as a lymph node from my thigh in 2013 and was told that the surgery had removed it all. When I was diagnosed with melanoma again in July of 2019 it had spread to my retro peritoneal area and my groin. By the time of surgery, two week after my PET scan the surgeon said it was much more extensive than what the PET scan showed, he took multiple node from my groin and retroperitoneal area, as well as two veins in my thigh. The second surgeon once again said he had gotten all of the cancer. The surgery was so difficult as well as getting follow up that opdivo was late getting started. My first repeat PET scan in December showed a positive node in my retroperitoneal area again and because of the BRAF mutation, MDANDERSON suggested I go off the opdivo and get the tafinlar/mekinist therapy. I am single so, I was trying to manage my own care which I was obviously not doing very well considering how poorly I did following that August surgery.