Thursday, May 17, 2012

Another bump in the road

Unfortunately, Cam has hit another bump in her road to recovery.  On her first post-radiation scan on May 2nd, the doctors found 2 new tumors on the left side of her brain as well as some additional areas of concern at the top of her brain. 

Since that time, we have been feverishly working to find out the right treatment plan for her to follow.  No one is too eager to radiate the rest of her head.  The risks associated with that are far to severe according to the neuro-oncologists.  Originally, we were told that she was not eligible for the two clinical trials that would have been good for her.  So, we proceeded to look for the right drug to stop the growth of these new tumors.

Shortly after coming to a decision on one drug (and I mean SHORTLY - like 20 minutes) we received new information from the doctors that she actually IS eligible for not one, but BOTH of the clinical trials that we were previously told she could not participate in. 

Trial 1 is being run at Memorial Sloan Kettering Cancer Center in NYC and is developed by CERN (Collaborative Ependymoma Research Network).  It involves 2 drugs - Avastin and Lopatnib).  Cam would need to get an IV infusion of the Avastin and be seen multiple times per week.

Trial 2 would be handled out of our local hospital by the oncology team that originally cared for Cam and would involve only 1 drug (Sutent). 

Yesterday, Robin spent the majority of the day with Campbell at the local hospital for blood work, EKG, ECG, more blood work in preparation to start Trial 2.  Just to further complicate things, the hospital has to run participation in any clinical trials through their legal team as well as their Internal Review Board.  This information was given to them a week ago so that we could make this happen.  In typical fashion, the IRB did NOT approve it yesterday (the doctor that needed to wasn't available...must have had a tee time).  Which means, Cam will have to have ANOTHER MRI (it needs to have occurred no more than 2 weeks before starting the trial which would have been yesterday).  UGH!!!!!

Today, we will meet with the doctors at Sloan to discuss trial 1 further. 

We have also learned participation in Trial 1 would exclude her from participating in Trial 2 later (because of the drugs being taken, apparently).  So, while it looks like they are both options, this may be the deciding factor.  The doctors at both Dana Farber (Boston) and at the Valerie Center (home) are equally happy with whichever one WE choose (isn't this why we pay THEM?).  All things being equal, trial 2 would be easier for us to manage and for Cam (it is oral as opposed to a two drug infusion).

For now, Cam has really not shown any symptoms from the 2 new tumors in her head.  The tumors in her spine that have already been treated are stable (which in her world is just as good as gone) - which is really good news.  We will keep you all posted as we travel down yet another new path for Cam. 

With Love,

Greg, Robin, Caitlin, Caroline & Campbell