Friday, November 29, 2013

Have Cancer...Giving Thanks and Feelin' Lucky

     Thanksgiving is a time for most of us, including me, to reflect on our lives and take note of the things that we are so appreciative of...supportive family, wonderful friends, great work colleagues.  This year is no different for me, except I've made note of a new category of items to acknowledge and give thanks for. 

     I am a true benefactor of medical research, clinical trials, and previous lung cancer patients who bravely participated in research protocols to find new treatments for those coming after them. When one agrees to be part of a Phase I clinical trial, you become one of a small group to receive a new treatment so researchers can determine proper dosing, coupled with documentation of all side effects.  In my language, this means they don't know how much to give you, how often, nor what bad things may happen.  Some Phase I trials are terminated prematurely because early on the side effects are recognized to far out-weigh any benefits.  As I see it, Phase I clinical trial participants are courageous heroes and I am so thankful for them. 

     My particular medication, Xalkori, is still in clinical trials and I am not a participant.  Nine months ago, when I learned I have a ROS1 tumor mutation, my oncologist wrote a prescription and, after a few days of wrangling with our insurance company, I received it. I wondered how I was able to get it because the FDA doesn't usually approve medications until a clinical trial is completed.  I'm told that the participants in this trial were doing so well on Xalkori that the FDA 'fast-tracked' the medication, making it available sooner to everyone who can afford it, or who has good medical insurance coverage. (I fall into the latter group.)  The FDA 'fast-tracked' approval for the use of Xalkori in November, 2012 for a mutation similar to ROS1, and in early 2013, approved it for use in ROS1 patients.  The timing couldn't have been better for me...I started taking it in March of 2013.  

     There are two new 'second generation' treatments that are in clinical trials now which hope to be used in patients when the targeted oral therapies, like Xalkori, stop working.  I recently read that one of these new treatments may also be fast-tracked by the FDA and may be available in, as soon as, 3-6 months, (or maybe, as long as, 10-12 months.)

     So far in my journey, I have been able to benefit by being just behind the research curve.  That is luck.  Pure and simple luck.  There are so many advanced stage lung cancers patients who proceeded me by less than a year who were not given medications like Xalkori because the information from the clinical trials wasn't known yet. I'm really hoping information from the 'second generation' medications becomes available soon.  And if not, I hope to be brave enough to participate in a clinical trial to "pay it forward", as it is said.   

     The other day, Wynn and I were talking about the timing of the FDA approval of Xalkori and how it couldn't have been more timely for me.  

Me:  "I am a very, very lucky person."
Wynn:  "So am I."

...and that is another reason I am feeling so lucky.  I love my husband. 


1 comment:

Beth said...

I just wanted to say hello! I, too, am ROS1 positive Stage IV, and am doing well on Xalkori/crizotinib. I also just celebrated a birthday (in January), which was huge after thinking I would not make it a year. I'm enjoying your blog! I also blog (kind of maniacally, perhaps, but I'm going to try to slow down) at