My clinical trial with MLNo128 finally ended on December 23 with the scans showing disease progression. It was one of those drugs that was too toxic for me at the full dose but not effective enough at a reduced dose. I still have residual side effects even though I have been off the drug for over two months. My nails are still dry and brittle, my tummy trouble is not fully resolved and I itch all over, all night. My back looks like I have a serious case of the kinkies the way I have scratched myself. However, I had a good run in the world of clinical trials and metastases. I was on the drug for 32 weeks before progression and I still exercised for two hours a day, ate my vegan diet, slept as poorly as usual, did chores, watched movies, worked full time, learned something new every day (I am addicted to MOOCs) and was a mother and wife and friend.
I spent a few days in Florida at Islands of Adventure and Universal in Orlando and staying with dear friends on the beach. I went for long walks and ate great food and put my illness in a little box in the back of my mind for a little while.
The problem with clinical trials is there is no wiggle room. A scan scheduled just before holidays means exactly that. There is no postponing to a less-stressful week later and this scan day was a day that one wishes did not exist. Although I hadn’t had any pain, I had some feeling of things weren’t quite normal. Normal of course is a moving target when you have cancer and half of you hopes that this is just a different normal, but the sensible half of you knows that the results of the scan are not going to go your way.
I had a complete melt-down at the doctor but had pulled up my big girl pants by the time I got home and cheerfully celebrated the holidays with my family, reserving tears and fears for the loneliest small hours of the night. We ate good food and played games and I took my usual thousands of photos while the washout period of four weeks began. It’s very scary to be told that all treatment will stop for four weeks before you can join the next clinical trial.
First stop was a liver biopsy. That was relatively painless and I arranged to donate tissue for research at the same time. Then came the blood work. They had to take so much blood that it had to be done on two different days. The first visit was 12 tubes of blood and a few days later I went back for another 16 tubes, an EKG and urinalysis. I was finally ready to have the infusion.
I got to the infusion center on the appointed day, exactly four weeks after my scan and the research coordinator caught me before I went in. I could not start the trial because my white blood cell count was too low. This has been an endless problem since I had my first round of chemo a decade ago. I was devastated. Not only did it mean I missed the start of the trial but now I had to have the scans repeated because I had missed the four week cut-off since my last scans. So I duly went and had more scans and breathed through the associated anxiety. As you can imagine, four weeks without treatment meant that my scans were not pretty. However, I swallowed hard and prepared myself for the new trial.
First step was I had to get my WBC count up. I did the right things and did what I was told. As insurance, I ran up 48 flights of stairs before my blood was drawn for a WBC count. Ha. The count was higher than it has been in a decade. Now it was way up and I could begin.