Well here it is. I get my 18th MDX infusion tomorrow. It is now a year of treatment. Can't believe it. I would have never thought I would still be here if you asked me in Dec. 2011. Response has been incredible. Soft tissue tumors are essentially GONE! And there were plenty of them. A couple of painful spine and hip mets also gone. Unfortunately, this summer I developed new mets in my spine and rib which didn't go away with the medication. I had radiation to them and pain is minimal. We will find out their status in 3 weeks when my next scan comes up.
I also had evidence of another new rib met at that last scan. This one has been extremely painful. The pain began right after my infusion of MDX and zometa. Pain was worse than pain that first sent me to the hospital and even after nephrectomy. It began to resolve after about a week. At this point it is constant but low grade. My infusions must have attacked the tumor viciously. Perhaps it will be gone by next infusion. Or, more radiation may be given. Which ever the case, bring it on.
It seems to me that the bone mets are more resistant to the MDX. Also seems strange that while all other tumors have gone away, the cancer has managed to find the bones as a good residence. I worry that it will be determined that I no longer respond to the MDX and it will be stopped. I don't want that to happen. I still have great faith in it. So tomorrow will be an uneventful treatment with only blood work as an indicator of my progress. I do wonder if I will develope the intense pain again. This will be interesting. I've recieved the zometa at 6 week intervals and will ask about getting it at 3-4 week intervals. Also, my thyroid tests are never ready for review when the other blood work is ready. I will follow up on that as I demonstrate fatigue, dry skin and feeling cold. Unlike me. Also,
I have not been able to exercise since this June ( due to pain), and I don't want to break any bones. Especially in my spine. That could screw me up for the long term. Can't wait to lift and run again. This "Chronic" disease is still challenging. Fortunately, I should have many years to master all the changes.