I hope your appointment(s) went well today. When I started treatment (ipi-nivo), i had metastases in various lymph nodes, both lungs, both breasts, liver, pancreas, outside my spleen, and outside my kidneys. I could feel three of them under my skin. Two weeks before that horrible scan, they were “only” in a lymph node and my lungs. I was initially going to go on a clinical trial, but wasn’t able to join (no reason given). That was frustrating because it delayed the start of my actual treatment. I only received 2 treatments of combo ipi-nivo, due to the effects it had on my liver. It terrified me to not be given all four treatments. The nivo was discontinued a few months later due to unacceptable side effects (the liver again, though I had other side effects, some reversible and some not, and one other “serious” side effect). I had already gotten my first scan showing I was NED. It was scary for all treatment to be discontinued, but I had already had my first NED scan, so it helped me deal with the fear of doing nothing. I feel incredibly lucky to have had the best response so quickly (minus the side effects). I really hope that you feel better after today and I especially hope that your treatment plan is effective for you! Also, I worked throughout my treatment (short as it was overall), but often had to leave work early the day or two after a treatment. I would recommend requesting to get your treatments on Fridays (or Thursdays) so that you can rest over the weekend (assuming you work M-F), if you are concerned about missing work. Hang in there. It’s tough. Stay strong.
