It’s all about the trial, bout the trial, no trouble!

Mike had treatment 19 at Ohio State on Friday. He has gained another 2.5 pounds,  which put him at around 166-167 pounds. We were thrilled! It was a rare day that the trial coordinator had plenty of time, and we were able to chat with her a while about the trial, other patients in the trial, and I got to ask her all sorts of questions about other trial participants.  They have now had the opportunity to try this drug on 9000 volunteers, and updated the potential side effects on the trial documents that he has to sign in order to stay in the trial. Everytime they make a change to the trial, they let us know, and we have to sign documents that we understand the updates. It is a formality for us, because he is going to stay in the trial as long as his health allows, but we appreciate being informed.

One of the  new potential side effects discussed is pancreatitis. They do have someone who is having trouble with this, and they have to remove her from treatment temporarily, treat with steroids, and hopefully she will be able to restart treatment again. They told us at this visit that they initially suspected pancreatitis when Mike was having trouble in October-November, but his symptoms were slightly different from the classic symptoms, and they settled on the ulcer as a diagnosis.

We also found out that Mike can stay on this trial for 2 years. He has been on it a year in March, and he will get another year as long as everything stays positive. After the 2 years, he will be monitored each month for 2 years, and if he starts to have tumor progression again he will be treated again. We have been hoping that the FDA would approve this treatment for MSI tumors, but although they are fast tracking it for colon cancer, and it is approved for melanoma and lung cancer,  it doesn’t look like they have MSI tumors, or cholangiocarcenoma on their list for fast tracking. We will probably be going to Ohio State for another year if we are lucky enough to stay in the trial.

We did a short facebook video when we were at Ohio State, and if I can figure out how to upload it here I will. I spent an hour trying to figure it out, and finally gave up! As I am sure you all already know, this blog and everything involved with producing it is very new to me. While I have had a business blog for years, I have been very inconsistent with it. You all have inspired me to try to figure out why my pictures turn out side ways sometimes, correct my grammar errors,  and to try to communicate better.

We go back to Ohio State for scans in a few weeks, and for treatment 20. As always, thank you for your support.




  1. Thanks so much for the detailed information, it really helps to process it all. Did they tell you what cancer type the person who acquired the pancreatitis had? Just wondering if cholongiocarcinoma would be more suceptible or just one of those things. I’m soooo glad Mike has been doing well, our prayers continue for all of you!

    • You know I don’t think they did tell us what type of cancer the other patient has. I do know that they don’t have that many people with cholangiocarcinoma in the trial. Problems with thyroid are also a side effect of this drug, although remember the stats are still low. You will know whether this is working for your mom in about 12 wks, but she may start feeling better right away. Don’t be discouraged if she doesn’t, because there could be false progression. That is why they don’t scan until 12 wks.Hope this helps you!

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