Clinical Trial so far

So, an update on how the clinical trial is going so far. After a long delay, I finally got the pre-trial screening on April 5th. Rich went and kept me company through a CT scan, a meeting with doc, the clinical trial planner and the nurses, an EKG, and LOTS of blood tests.  We counted - they drew 24 tubes of blood!

After that, I waited, impatiently, for notice that the trial was ready for me to start.  It finally started on the 19th.  And the delay was merely preparation for the long day that was in store for me. Jen picked me up about 6:15 AM, and with a quick stop for breakfast, and traffic, we were fifteen minute late for the 7:30 appointment. We started the day with taking my vitals.  My blood pressure was high.  Gee, I wonder why!  Then, they had trouble getting my IVs put in, then we waited an hour for lab results, talked to the doctor and clinical trial planner, waited for the pharmacy to mix the IV, order the free lunches (bonus!), took two hours to for the drug to infuse, take my vitals and blood samples LOTS of times.  Through all of this, Jen and I entertained ourselves watching cartoons on TV, playing online games, solving some brainteasers, and general time wasters.  At about 2:00, they said I'd be there until 6:30 (!) so we knew to settle in for the long hall.  When they said at about 3:45 that the next test was not until 6:30, we decided to go on a nice long walk to stretch our legs.  After the walk, we went back for more time-wasting, and the last blood draw and vitals check.  Dinner on the way home, and we finally pulled up to my house at about 8:20 PM.  

The good news is the only weird side-effect I noticed was a strange taste during the IV infusion that went away shortly after the IV stopped.  Rich and I went back for another blood draw this morning, and aside from a lack of sleep (I think due to nervousness about the trial) I feel great. 

Now, I just have to keep showing up for blood tests on various days, and the drug infusion every other Tuesday, and wait for my next CT scan June 13th, and the results on June 14th, while I try not to get my hopes up for a miracle. Thanks for reading! 

A lot of changes - and it's a good thing!

Wow, it has been a while since I updated this blog.  Since I only update it when I have cancer news, it won't surprise you to know that I have news on that front.

But first, the really good news. Since my last blog update, I have met a truly wonderful man who seems to take most of the cancer stuff (and my over thinking it) in stride. He keeps me calm when I am worried, and can help me laugh about anything.  I can't wait until we are married! (July 9th!)  I could go on and on about his wonderful qualities, but you'd probably be bored.  :)

Ok, now onto the cancer stuff - I was offered, and accepted, a spot in a clinical trial.  Before I get the drug, I have to get (and pass) a series of blood tests and scans to make sure that I am not bringing any unnecessary risks or variables into their experiment.  If I pass, I will get the drug by infusion (IV) every other week for eight weeks.  After the first eight weeks, I'll have another set of scans to see if the drug is having any effect.  In the meantime, I'll have lots of blood tests to check things like how much drug is in my system, and how my immune system is reacting to the drug.

The drug is an immune booster, that will, in theory, make my T-cells more active and more able to recognize the cancer as foreign and (hopefully) attack it. (For any of my immunology-versed friends, it is an OX40 - (CD134) agonist.)  The side-effects for this class of drug are generally mild, with fatigue being the biggest one.

Any clinical trial comes with risk, and absolutely no guarantee that it will help me, or anyone who tries the drug.  I accepted the spot, not because I am feeling worse, or because I think it will be a miracle cure, but because I hope that this trial will be a small step in the search for a good treatment for ACC.

I will try to keep the blog updated with dates, how the trial is going, and how I am feeling. Thanks in advance for your prayers, happy thoughts, and support as I try this path.

Rich and I enjoying the Christmas Lights