I just had my 55th birthday

 

I know...it has been a long time since I posted. Sorry for any of you that have been waiting for updates. I had and MRI and CT on June 1, and it showed no change in my liver tumor, an additional small spot on my lung, but overall not a lot of change since my scans in March. I had genetic testing done on my tumor and it showed a rare gene fusion. There is a specific oral chemo medication that targets this gene mutation. 

I started taking it on June 14. Kevin and I took a quick trip to Florida to visit my best friend. While we were there, I had a bad reaction to the drug and took a trip to the ER to rule out blood clots and confirm it was a reaction to the medication. I stopped taking it for a month. When I went back to St. Louis to see my oncologist, my cancer antigen blood test had shown a significant drop. He wanted me to try the drug again at a lower dose to see if I could tolerate it. I started taking the lower dose on July 14. I seemed to tolerate it better. One side effect of this drug is that is raises phosphorous levels to an unhealthy level. This of course happened to me. To lower them, there is another drug to take. I am unsure which drug it was or if it was just the combination, but my joints began to hurt severely, and once again I had to stop taking the medication.

I saw my oncologist in Springfield today, and I will stop trying the oral chemo pill. It is hard for me to accept, because I know that it has a higher possibility of lengthening my life. It would not cure me, because there is no cure for the type of cancer I have. I will go back to the original chemo I had in St. Louis, but I will get it here in Springfield to lessen the trips back and forth. This drug kept my tumor from growing, which is a good thing. As long as my liver is working well, I feel pretty good even on chemo.

Here is my schedule for August:

August 14 - stent replacement in St. Louis

August 17 - chemo in Springfield

August 24 - oncologist visit and chemo in Springfield

August 30 - MRI and CT scans in St. Louis

August 31 - oncologist visit in St. Louis

Then I will continue with the 2 weeks in a row of chemo and one week off (one round) as long as I can tolerate it. I only had 3 rounds of it before, so I am unsure how I will do beyond that.

Thank you so much for praying for me and my family. We appreciate your love and care so much!

I love you, Sheryl