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. 


Friday, November 22, 2013

CT Scans #5, Update


     Just got a call from my oncologist's office.  Yesterday's scans show that my bone lesions are about the same, (a good thing), and the lesions in my liver are better...meaning fewer and smaller.  The most relieving news I received today is that there is no evidence of metastatic disease in my brain.  WAAHOO!!  There are lesions in the bones of my neck, but they were there from the beginning.  
   Today is a good day for me.  Maybe I'll sleep better tonight. 


Thursday, November 21, 2013


     It's 4:00 AM and I'm lying awake thinking about my upcoming day.  In several hours I'll be having follow-up CT scans of my chest, abdomen, and pelvis to see what's happening inside me.  Ideally, there will be fewer tumors and the remaining ones will be smaller.  (Ideally, ideally...they'd all be gone, but I know better so I just hope for fewer and smaller.). 

     Along with CT scans today, I'm having a brain MRI to make sure that the cancer hasn't spread  there.  Although I feel like Xalkori has been working well for me below my neck, it's known that it does not cross the blood brain barrier. I'm told that researchers think that while Xalkori is working, the risk of brain mets is probably reduced, but certainly not zero.  

     If I haven't mentioned it yet, I'm really, really afraid of getting brain mets. Aside from associated (major) headaches and seizures, I'm so afraid of anything that will mess with my ability to think and communicate.  The good news is that brain mets can now be treated with a non-surgical procedure called gamma knife, with good success.  I don't know much else about it, but am relieved that if I am found to have brain mets, there is something to do about them.  

     "Scanxiety" is a term well known to cancer patients.  These periodic imaging tests are scary and nerve-wracking.  Despite Xalkori's ability to help keep my cancer at bay, it won't work forever.  I just hope today's scans show me that it's still working...for now. I should get results tomorrow, or at the latest on Monday.  

     Stay tuned.

Friday, November 15, 2013


     I am a board certified, licensed genetic counselor.  In Illinois, to have a license, you must be nationally board certified. To maintain certification, one must demonstrate, periodically, that one's knowledge is current.  One way this can be done is by obtaining continuing education units, (CEUs), which one gets by attending approved educational conferences in genetics and genetic counseling.  Re-certification takes place every ten years and one must accrue 25 CEUs in the intervening ten years.  I'm up in 2015. The other way to get re-certified is to take the board exam again. [I'd almost rather have cancer.]  Since I promised myself that I would never take the  exam againI have diligently attended annual educational conferences to accrue, at a steady pace, the needed CEUs so that I'd have 25 by 2015.  Going to these meetings is, hotels, conference costs, CEU fees, etc. However, going every year meant that I got to learn cool new stuff and, more importantly, I got to share a hotel room with my grad school buddy, Stef, for 4 or 5 days and spend time with dear friends and classmates, usually in a nice city.  Mostly, I thought of these trips as the cost of doing business.  Makes sense, right? the end of 2012, when I was diagnosed with really bad cancer, I thought I'd never have to worry about CEUs again.  I considered it a cancer "perk."  I did not attend any educational conferences in 2013 and have not earned one CEU this year. that I'm doing well on Xalkori and I've exceeded the median life-expectancy of someone with stage 4 lung adenocarcinoma, it occurred to me that I should probably start worrying about CEUs again.  If I'm doing well, I'll want to be working, so...I'll still need my license. Additionally, I recently had my annual gyne exam and my oncologist ordered a mammogram.  I should probably ask him about starting to measure my cholesterol level again.  Eleven months ago I was certain that I was going to die of lung cancer.  It was a hell-ish beginning to 2013.  I don't think anyone, (my doctors, me) ever thought that I'd have to start screening for things that could kill me other than lung cancer...let alone worry about CEUs.   Who'd-a-Thunk! 

Tuesday, November 5, 2013

Eye Exam Follow-up


          I had a six-month follow-up eye exam today.  The retinal lesions that were present in both my eyes 10-11 months ago are all gone.  Whew!  Good thing...if they'd gotten worse, I would have slowly lost my vision.  I don't know if it's the Xalkori that's keeping the retinal lesions away, or what.  In any case, I'm very relieved.