OK, so the good news is I don’t have any tumors in my feet or critical organs!!
I’ve had some pain in my abdomen for a week that hasn’t gone away so Monday we emailed Dr. Urba. He scheduled a special, not normal time to meet with us on Tuesday. We got a PET scan on Wednesday in spite of the insurance company refusing to pay for it at the last minute. (Dr. Urba thinks he can get that fixed). Dr. Urba called us before we got home from the scan and said there are lots of little tumors all over. In our second special appointment this week, today, we saw the scans with tumors from my face to my shins, some in soft tissue and others in bone. None in critical organs. It looked like around 20 or so.
An MRI of my brain is scheduled for next Tuesday to be sure nothing is growing there. A biopsy of one of the close to the surface tumors will be done soon to determine if we do anti PD-1 alone or combined therapy with Yervoy. I will likely start with immunotherapy intravenous infusions every two to three weeks for a year or two the week after Christmas. It will likely make me weak and can cause diarrhea and rashes but might not. Everyone is different. The combined therapy is more toxic but can be better depending on what the makeup of the tumors are – that is what the biopsy will tell us. The success rates sound really good with 50% - 60% of patient's tumors shrinking and 40% of patients experiencing durable cures. Those are much better numbers than it was with the options available when we first started this journey. We will likely still be able to travel and do most of what we get to do now – maybe… a little slower:-)
We are so grateful for each of you and so appreciate your love and support!! Dr. Urba has been amazing to work with! Ane has also been so wonderful to be with through all of this.