business or pleasure?

The trip was a success!!  I am on the schedule for starting the drug on May 8th (assuming I can work out my insurance issues, which are still up in the air).  I will go back every other week for a quick appointment and the drug infusion (which should only take about 90 minutes).  In three months we will scan and see if it is working or not.  Of course it will be working, so we will do the same routine for another 12 week round.  If (when) I am still responding I would go every 12 weeks for 2 years for the medicine.  I originally thought it was every other week for a whole year, so 6 months was a nice surprise.  It's a small price to pay for possibly the best medicine melanoma has seen yet. 

From what I understand the response rates are around 25% or better.  It is drug very similar to Yervoy (IPI) that I responded to so well to in June.  It acts just the same way, but uses different pathways.  Pathways that aren't showing the same side-effects as IPI, and the side effects are generally less severe.  This is the first trial of this drug that would let me in because of my side-effects from IPI.  This trial is to see how patients who had dose-limiting toxicities with IPI (remember I could only take one dose of the four you are supposed to receive because of the colitis) would do with the anti-PD1.   It is a very exciting opportunity.  This is the same drug I tried to get in Portland. 

It will be very interesting to see what happens.  Will I respond quickly, as I did with IPI?  I hope so.  I have now lost some range of motion in my arm due to my growing tumor.  It hurts when I stretch, reach, and is very obvious when I swim.  The pain is above the tumor, and it feels like a tendon or something has just been pulled too tight, and has no more give.  So I kind of need it to work quickly. 

In the meantime we need to move!  We close on our house today, and have to be out of this one by Monday.  So ready or not...

Just found out I qualified.  Sitting on the softest beach, watching the sun go down and the moon rise.  It was a good night.

Nothing more romantic than the ocean.  Even if I was alone.

good to go

everything went well today in Florida.  Alisa will come home tomorrow but is likely in the trial and can start soon.

-Josh

I would elaborate, but I don't have the skills for the blog.

cleared for takeoff

Brain looks good.  I fly out to Tampa tomorrow for my appointment on Wednesday.  I will be alone so I must be brave.  I prayed to try everything, and here is my chance. 

check it out

My nephew was on almost all of our local stations yesterday.  How cool is that?

plan a

We have decided to try the Florida trial first.  I will keep my appointment there on Wednesday.  I will have a brain MRI this week to make sure all is good there.  All we need is that to remain clear, and the stars to align.  Not too much to ask, I hope.  In the case there is something in the brain, we will likely treat it like we did last time it showed up there.  If the brain is still clear, but I don't qualify for some reason (there always seems to be some reason), I can come back and be re-screened for the injection trial here.

So sorry for the unanswered calls and messages.  They have meant so much to me.  I haven't felt like talking much, or explaining a situation I barely understand.  I can understand the need for 'space' during certain crises.  Required partially because it is hard to add others' anxieties to my own.  These last couple of weeks it seemed quite impossible. 

But it's over.  We have a plan.  I am finally smiling inside again.  

as of today

We are still waiting on a few pieces of information.  It is a long and complicated.  It gets longer and more complicated the more I find out.

Bottom line is, I have an appointment to see the doctor in Tampa on the 24th (to get on the waiting list for the pd-1 drug).  I also have an appointment to get this large tumor injected with a modified cold virus on Thursday (the trial they are doing at the Huntsman).  It looks like I can't do both, and either one is going to require another brain MRI. 

We will be making a decision by Thursday likely, either way.  I thought this was a pretty big deal until I heard the news from Boston today.  Some things (most things) aren't really that bad. 

I will keep you posted.

follow up

Josh read my last post this afternoon and claims he 'lost it.'   Said that he doesn't like to see everything in one place.  "I can take one thing at a time."  Like he had never lined up our troubles, and certainly never added them up.  Surprising, the way he can compartmentalize.  To me everything is always all together, right in front of me.  I even include the weather in the mix of how the day is going.  Sometimes it seems like a beautifully orchestrated movie, and sometimes it just seems like a mess.

Communicated with the doctor today.  He is trying hard to get antiPd-1 one way or another, and if that doesn't work come up with a plan b.  My job now is to be patient with the process.  Okay.  I can do that.

Going ahead with the house.  Josh is excited about it.  I am trusting him on this one.  Not worried, honestly.  It's the other things we have going on that are going to give me an ulcer.  

Rainy Monday afternoon with a tumor in my armpit and a poodle on my lap.  I had been crying and Josh snapped a picture of the pathetic scene.  I felt immediately better when the boys got home.