Friday, April 12, 2013

D(ONE) Once Again!

After 6 months of treatment I finished my Clinical Trial on Tuesday.  All of my numbers continue to look good and now we get to wait.  I will have monthly blood tests and another CT Scan at 9 months to check for disease progression.  End of short Report.

 I have now officially finished my 5th treatment since 2007.  I have to say that this last treatment was the mildest of all the treatments that I have received.  I basically have had no side effects, and the only issue is to go down to La Jolla and spend 5 hours in the infusion chair.  All of my numbers looks good and my physical exam is very positive.  The one thing that we do know is that the treatment that I received (Ofatumumab), knocks the disease down, but does not knock it out.  So the big question is how long will this remission last?  No one really knows as everyone responds differently, but the hope is that it will be a while before I need treatment again.

 What I am really waiting for is the availability of the Clinical Trial drug Ibrutinib.  This is the drug that was on the other side of the trial that I was on.  As I have mentioned before, the hope is that if I do need treatment again, that Ibrutinib will be available to me because I was on the trial.  No one knows when this drug will be officially approved by the FDA, but they are thinking sometime in 2014.  The results from Ibrutinib have been nothing short of amazing.  About 97% of the people who received the drug have responded.  This is unheard of in the cancer treatment drug world.  Besides the response, this drug is a pill, not an infusion.  It also is not chemotherapy, but it is called a Bruton Kinase Inhibitor.  If you would like a technical description, here it is:
 
Ibrutinib was designed to specifically target and selectively inhibit an enzyme called Bruton's tyrosine kinase (BTK). BTK is a key mediator of at least three critical B-cell pro-survival mechanisms occurring in parallel — regulating apoptosis, adhesion, and cell migration and homing. Through these multiple actions, BTK helps to direct malignant B-cells to lymphoid tissues, thus allowing access to a microenvironment necessary for survival.

 I thought that was pretty humorous.  If anyone would like a more detailed description, you can email me.  Even if I don’t get Ibrutinib, there are a number of trials of non-chemo based drugs that are really promising.  The talk among all the CLL experts is that they expect that in 3-4 years there will be no chemotherapy used in the treatment of CLL.  This is really exciting news.

 There is always excitement in the Evans family.  We are now anxiously waiting for the birth of our Second grandchild (a baby girl).  The official due date for Matt & Randi’s baby is April 18th, and we are just waiting for the call so we can fly up there.

 Some people may be wondering what the title of my blog posts actually means.  You have to have read this far to find out.  You will notice that the ONE is in parenthesis.  This is because the word DONE has a double meaning.  I received my last treatment on Tuesday, and on Wednesday I went out and played golf.  On the 3rd hole at El Dorado I got a hole in ONE.  Hence the double meaning.  So you can tell that this treatment affected my golf game in a positive way.


 All for now.  I hope to be boring for a long time.

Terry