Friday, November 3, 2017

What Is Going On!!

Although it is November 2, I am going to go back when everything started changing. I had a scan the first week of August, and it showed more growth than stability on the INCB054828 trial. At this point, Dr. Meric-Berstam and I decided it was time to exit that trial. The side effects had gotten worse, and the negatives were definitely starting to outweigh the positives. I was also running a low grade fever for about a week when all of the above happened, and after consulting with Dr. Javle, we agreed it was best to wait until the fever stopped before starting a new trial.

Life seemed to drag by each day, and as each day passed, my worry and anxiety was growing like a snowball being rolled downhill. I was off of any therapy to stop my cancer from growing, and I was beginning to feel alone and depressed. There were days I didn't shower for three days as I really thought I was dying, so why care about my appearances. I barely left the house. This is the first time I let depression get the best of me. Throughout the past (almost 7 years), I have never felt so alone and I just felt like it was "my time." I wasn't eating a lot, and I was starting to lose weight.

Throughout August and into September, the daily fevers never went away. I saw my local doctor, and after removing my port to eliminate it as a source of infection, I had an appointment with an infection disease doctor. He quickly determined there was nothing else to blame. The fevers were tumor fevers.

About the second week of September, Dr. Javle and I agreed it was time to get me on a new targeted therapy clinical trial for the FGFR mutation. This is my third FGFR trial.....and I needed a miracle to stop the cancer growing inside my body. On September 19, my daughter, Jennifer, and I traveled to Houston to start the TAS 120 trial at MD Anderson Cancer Center. Scans confirmed my cancer was doing a happy dance inside of me. I was not surprised it was growing. Testing to make sure I was eligible for the trial moved fast and swift....we didn't waste any time and I was approved within days. We were even able to visit the cholangiocarcinoma lab (along with several board members from The Cholangiocarcinoma Foundation) at MD Anderson and were honored to meet the lead researcher, Dr. Larry Kwong.

I started taking the drug for the TAS 120 trial on September 21, 2017. On September 24, my fevers were gone. Pat returned home from his hunting trip a few days later, and he was adamant that the trial was working, as I was a totally new person. Soon after, I was going for walks. I was having lunch with friends. I started watching grandchildren again. I went to the Covered Bridge Festival for the day.

After six weeks on the trial, I am back to painting and considering a fourth children's book. I am feeling like the old me and not worrying about when I am going to die. I am LIVING AGAIN!!

This trial has a lot fewer side effects and I am doing so well!! Drum roll please!!  After just six weeks on the TAS 120, my scan on October 30 shows that overall I had 40% reduction in the overall size of the cancer!  This news was the best news in about a year for me. My doctor stated I have had the best response of all of his patients on this trial. There were two other patients on this trial that had a scan the same day as me. We all had great responses! Dr. Javle had mentioned the TAS 120 a few times over the past several months while I was on the INCB trial. He stated we had a backup plan, and he really thought it would be a good fit for me when the time came. I am so glad he has always had a plan at just the right time. You see....this is the type of doctor I want in my corner. One who is always three steps ahead of me when it comes to my health and what will keep me alive with the best quality of life.


Over the past 7 years, I have thanked God so very many times for the life I have had since being diagnosed with this dreaded cancer. When I lay my head down each night, as I pray and thank God for all the memories that I have made with family and friends. I am so truly blessed with my family here in Illinois and the family I hold dear to my heart in Houston. When I was diagnosed, my outlook was not good. Not good at all, BUT I have never lost my faith. I know God is still right beside me every single day.

I am living every single day! My health and my mind are as good as it can be right now! I have lost about 15 pounds and am keeping my weight stable. I am eating normal again because I feel normal again! I am thinking about joining a gym again to get daily exercise. I went outside with Pat this morning and we walked 1 1/4's a start!!
I appreciate all the people who have called or emailed me because I went so long in between this post and my last post back in July. People who called just to check on me are so appreciated in a cancer patient's life!!.

Be patient with me to post again, as I am too busy trying to stay alive and living each day to its fullest!! I promise it won't be another 3 months!!