Another Reason for Celebration and Equipoise

Two weeks ago had my one month follow-up blood test and I also received my monthly IVIG infusion.  All my numbers remain the same, as I would have expected.  Now I get to wait another month and have a bone marrow biopsy to really see what is going on.  For the last 6 months I have been receiving Ofatumumab, which is supposed to manage the CLL, at least in the short term.  Next month it will have been 2 months since I received an infusion, so we will see what happens then.

The most exciting news in the Evans Family is the birth of our second grandchild on April 15^th.  Naomi Jean Evans came into this world very quickly.  We received a call around 5am saying Matt and Randi were going to the hospital and at 8:15 she was born.  Donna flew up that day and I followed the next day.  We stayed in Seattle at Matt & Randi’s  for a week and it was a real treat to be able to spend time with them, and the new family member, Naomi.

There was an interesting post 2 weeks ago by a prominent CLL expert named Dr. Susan O’Brien.  In this post she argues that there is no sensible reason for not allowing the 180 of us who were on the Clinical Trial and received Ofatumumab to now receive the trial drug, Ibrutinib.  The interesting thing is that ALL of the major CLL experts in the U.S. agree with her.  The problem here is the FDA.  They follow guidelines that are completely out of touch with reality.  It is well documented that Ofatumumab will give CLL patients a partial short lived remission.  So when I start to relapse, wouldn’t it make sense to move me over to the Ibrutinib which has had a 95% success rate in controlling CLL.  Although the trial officially closed in April, the documented results may not be available for over a year.  So, I suppose that you hope and pray that you can wait that long and have the drug approved for general distribution.  Seems like a crazy system to me.

http://www.ascopost.com/issues/may-1,-2013/ibrutinib-cll-trial-where-is-the-equipoise.aspx

So which category did you fall into?  Already knew what equipoise meant, didn't know, but looked it up, or didn't care?  I'm not doing your work for you.  Figure it out.

 

 I had an ‘end of trial’ CT Scan in March and results show that my lymph nodes have basically stayed the same (after initially shrinking at the beginning of the trial).  I am scheduled for another bone marrow biopsy in June to see how the drug impacted the marrow.  Then, in July, I will see Dr. Kipps and figure out what my next steps might be.  I’m still feeling well and enjoying life.

 

Terry