Sunday, March 17, 2013

Results are in......

I apologize to those who keep up with results and information through the blog only that I am just getting around to updating.  It has been a busy last week with appointments and Spring Break.  Wednesday 3/13/13 Steve had to be at MD Anderson at 7:30 am for a CT scan of his neck.  The CT of his abdominal area does not go that high, so they specifically scan his neck separately in order to get a clear view of his lymph node in his neck.  After the CT scan we had a little time to kill before his MRI appointment.  We went and had breakfast at House of Pies. (Pies yummy, breakfast....meh) After breakfast we headed over to Starbucks or some coffee and so Steve could try and work a little before his next appointment.  After about an hour at Starbucks we made our way back to the hospital.  Steve had his MRI and we were on our way.

Thursday, 3/14/13, we headed back to MD Anderson at 7:30 am.  Steve had an abdominal CT scan this day.  This one takes longer than the neck because he has to drink the barium drink and wait an hour to start the scan.  He doesnt have to drink the barium drink with the neck CT, they just inject him only.  While Steve was getting his abdominal CT scan, I headed downstairs to meet up with a friend, Kara (and her mom, Beverly) who I had recently met online through this blog.  She was recently diagnosed with Stage IV melanoma and is set to start treatment in the next week or so.  Kara is super sweet and I can tell we would be great friends!!  Did I mention she is from New Orleans?  Did I mention she is a Saints fan?  I see a friendship in the works here! 

After Kara got called back for her appointment, I headed back upstairs to wait for Steve.  He finished around 10:30.  We went upstairs to check to see if Dr. Kim was on time or not because Steve (and me for support) were fasting and needed to get some breakfast.  Our appointment was scheduled for 11:00 and it showed Dr. Kim was running 30 minutes behind.  We walked over to The Rotary House and had a nice breakfast at The Oaks restaurant.  While we were waiting on breakfast we got a call from our realtor.  We had recently put our land up for sale and she was calling us with an offer.  After a quick negotiation, we accepted an offer and are set to close on the 25th of this month.  Yay! 

After breakfast, we headed back over to wait for our appointment with Dr. Kim.  By this time he was running an hour and a half behind.  We were able to sit in the waiting room and visit with another couple that I also was connected with through my blog.  "E" and his wife "K" were also waiting to see Dr. Kim.  "K" is recently stage IV diagnosed also.  She is getting opinions from several hospitals/doctors and trying to decide which treatment route she wants to take.  Great couple and very fun.  Oh yeah, they are from Vegas.  Hmmm, another good match for friends for us :)

We finally got in to see Dr. Kim (I never, ever, complain about the wait.  Dr. Kim and his staff do NOT rush and answer all of my 50 million questions that I manage to come up with, so I am sure it is people like me making him behind :) )  We were hoping to hear that Steve was "NED" (no evidence of disease).  However we did not.  BUT, it is still great news.  Steve still had no new disease and his current diseased areas had shrank by another 40%-50%.  Also, another thing we have to keep in mind is that Yervoy continues to work even after you stop it.  Most people are scanned 4-5 weeks after the last infusion for that reason.  Steve was scanned only 3 weeks after the last infusion.  So, it is possible that had we of waited 4 or 5 we would have seen even more shrinkage. 

The "plan" from Dr. Kim is for Steve to come back in 3 months for scans.  While this may be the route we take, we are also looking to try and get into an anti PD1 trial.  This is a new drug that has had some really great results.  The results are usually long term and sometimes complete responses.  It is very hard to get into these trials for many reasons.  But the main reason is that they require you to have failed a treatment.  Steve has not really failed any of his prior treatments.  So, it will be difficult, but I will be focusing a lot of attention next week on calling doctors/hospitals to try and find a spot for him.  The Anti-PD1 has shown even greater response when paired with Yervoy.  If we could get into one of these trials ASAP it has the potential to work some real magic! 

If we are unable to get into the trial, we will have to sit and watch scans every 3 months and decide if that is the route we want to take and/or if we want to look into another trial/treatment.  Lots of big decisions coming our way.  BUT, Steve is doing great and tumors are looking good.  We just don't want ANY tumors!