Chapter 10 Breaking News

Well, it was an adventurous July of 2017.  I know I'm not to that point in my story, but as I decided earlier if something happened that I couldn't wait to tell you all, then I'd use a "breaking news" format to leap ahead to today, then the next posts I'll revert to the timeline I was following, which I believe is the last quarter or so of 2016.

One of the hardest parts of writing a blog is keeping track of what I've already told you and trying not to repeat content.  Sometimes it is necessary to give context to these breaking news formatted posts.  Ideally, if I had been up to writing the blog from the beginning of the story last August 2016, then it would have been much easier if I had told it as I went along.  But I was not in the frame of mind and didn't think I could really talk about it at the time; nor did I think I would ever want to publicly discuss my disease.  I realized after meeting many, many other cancer patients that I could have an impact on them and their friends and families; in a very positive way by bucking up and pretending to be brave.  That's right; this is all an act.  I'll tell you the truth now; I've been scared a lot; I've been depressed a lot; I worry frequently, and I cry quite a bit.  The only thing I actually like about this phase of my life is I finally have curly hair!

So, here's the "news scoop"; I had a full body PET scan toward the end of June.  It showed a lot of what I'd like to refer to as remission; most of the lungs were cleared up, as well as the lymph nodes, a lesion in my liver, and bones in my back as well.  These were taken care of by the immunotherapy drug called Xalkori which I had been on for I think 6 months.  I think I was ecstatic at the time, and I may have referred to this result somewhere in this blog.  On June 28, 2017 we did an MRI on my brain and read the results on the 29th.  My radiology oncologist, Dr. W, came into the room with a not very happy face.  I said "is it bad?" and she said "it's not good".  The first full-brain radiation in Oct./Nov of '16 had done a  good job erasing lots of the original growths.  Unfortunately, it didn't stop the creation of new growths; they were popping up in exponential fashion; very tiny, some less than a millimeter but still dangerous.  So the two docs came up with a new plan.  They needed to find a new med that had more  promising results penetrating to my brain.  They found the perfect drug, which should have garnered an easy approval from my insurance company.  But as usual, they balked.  They said I needed to try a similar drug first, even though Dr. P assured them he thought I was a perfect candidate for this study.  The situation is they need candidates for the study who have the exact type of cancer and mutations, etc. that I have.  No other candidates except those who are like me will do.  They're trying to get a fast FDA approval but they need to expedite the the study.  The copay on the Alecensa is really high, like $23,500 per month.  But the drug companies in cases like this are sometimes willing to offer assistance with the bill since they're trying to expedite approval.

Long story short;  I took the other, cheaper drug Zykadia at the insistence of my insurance plan.  I took it for only 3 days,  5  caps in the morning every day. I only took it for 3 days since that's how long I could tolerate it .  Friday afternoon I started talking and not making any sense.  I was afraid I was having a stroke.  Connie called the Doctor's office and asked what we should do and they said "discontinue immediately.  We'll submit it as a fail and try to get approval for the Alecansa again."  It was Friday, so I had 2 days without treatment; they called on Monday and said "the insurance wants you to try a reduced dosage first."  Five days later, same result.  Yesterday the Doctor's office called and said "We have great news for you!  You've been approved for the study that we were trying for all month!"

The meds arrived this morning by UPS from a Specialty pharmacy.  I take 4 tablets 2 times daily and I really hope they live up to our expectations.  I have a pretty good feeling about it.

If anything else changes that I need to report outside of the timeline, I'll do another breaking news post.

Look for some humor in my next post; just because it's been a while!