, , , ,

Sorry I’ve been a neglectful blogger, I’ve been busy making pies.

The checkup I had yesterday went very well. Nothing new was found and the existing tumors are shrinking.  In fact I’m just about where I was in April of last year with my heart and brain tumors. One of the two brain tumors was described as “tiny” and the report didn’t even give a measurement for it.

I bet you non-Stage 4 melanoma peeps are thinking “how sad”. I am making dinner, doing laundry, and last night pulled someone’s first tooth.  My cardiac tumor had gotten so big in November it was interfering with my heart function but now things are almost normal. Nine months, nothing new, same tumors almost the same size.  Living.  Win, Win, Win!!!

Zelboraf and its side effects are difficult; particularly my soles have huge painful calluses which are keeping me off my feet even though now I have much more energy.  I am way past filing them down if you remember me joking around on previous posts but am now cutting them down with manicure scissors at night but they grow back every day.  Waiting to hear back from the dermatologist on that one.   Blech.

I started a schedule where I am taking the chemo pills, two weeks on, one week off and trying to get completely off these steroids.  It should help reduce the side effects and might even make it work longer.  We’ll just call it chemo from now on; I’m done trying to train you on targeted therapies.  I’m still catching grief for using the word “pillory”.

There was a study released last week showing how a set of mice dosed with Zelboraf using an intermittent schedule lived twice as long as the same mice given the drug every day.  At 100 days, all the mice dosed everyday were dead.  At 200 days, all the mice dosed 4 weeks on/2 weeks off were still alive.  ALL OF THEM.

I started wondering.  How much Zelboraf have I taken?  At what dosage?  How much time have I been on and off the drug and when?  I scavenged data out of my online medical records, put together a timeline, created pie charts, and downloaded everything onto my iPad.  If you’re in a clinical trial there are reams of information, tracking and charting every sneeze and tumor change, every pill taken or IV given, and TONS of pharmaceutical company money behind it, but what about me?  Is there something in my data that can help me?  Or someone else?

I wish someone could pull it all together and slice and dice it 80 different ways. Could we compare it across 1000 other Zelboraf and Ipi patients? What would we learn?  Who could be helped?

Incredible amounts of data on you and me is being mined, compiled, bought and sold every day.  The goal is for you to buy something specific or ensure I can pay my bills.  What about saving my life?

I went to my appointment, I asked about my scan reports and I asked about the mice.  By the look on his face and the phrase my oncologist uttered (I will not repeat it, but he meant it in a good way) I got the feeling that not many of his patients compile their own data and graph it out for appointments.

My request to drive early is being politely ignored, “There are rules…”  I still see the radiation oncologist 2/14.  It never hurts to ask. If you think you see me out, it was a mirage.

I’m open to Spring Break ideas for the photosensitive so please share if you have any.  I thought I had everything sorted out but I can’t find a Chinese Facekini anywhere, not even online.


Every day I am thankful.  I am especially blessed to be feeling great and on the upswing, however long it lasts.  GOD IS GREAT!!

Peace to you all.  Squeak, squeak.