I Know the Feeling

This past New York Times-Sunday Review had an article, written by Paul Kalanithi, a 36-year-young, non-smoking neurosurgeon diagnosed with lung cancer.  It's entitled, "How Long Have I Got Left?"  Although Dr. Kalanithi doesn't specifically say what type of lung cancer he has, he is being treated with an oral medication that has allowed him to return to work.  It's a poignant and well written article and I relate to so much of what he writes about.  

Here's the link:

http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?exprod=myyahoo&_r=0

Thanks to Andrea and Annie for calling my attention to this article.

Information on Biomaker Testing for Targeted Therapies in Non-small Cell Lung Cancer

    
     I suspect this blog entry is for a narrow group of readers...probably my fellow non-small cell lung cancer (NSCLC) Ninjas, cancer genetic counselor friends, friends and family that are medical doctors, and cancer nerds.  

     Today, a dear friend and fellow genetic counselor sent me a link to a newsletter-type article from Mayo Clinic Laboratories.  This newsletter, called "Communique", has an article about testing for biomakers (DNA mutations and immuno-histo chemistry) in some types of lung cancers and the new medications being used to treat them.  It's a little technical, but I'm posting the link because over the past year, or so, through this blog, I've been contacted by other Cancer Ninjas that have a lung tumor mutation, [EGFR, ALK or ROS1], who are on a targeted oral chemotherapy. (Some even have the same ROS1 mutation I have and are taking Xalkori.)

     I believe this article was written to share new information, but also to profile the testing that is available at Mayo Clinic Laboratory, (ie soft advertising).  It's a nice review article for those of us who are interested in knowing what medications are on the horizon, and how well they are working for those taking them.  So, it's probably not so interesting for most...

Here's the link:
 

http://www.mayomedicallaboratories.com/articles/communique/2014/01-lung-carcinoma/index.html

     
Thanks, Suzie, for thinking of me when you saw this article and sending it my way.  

 

Cycle for Survival: This Year I Ride

       It's been a little over a year since I was diagnosed with stage IV adenocarcinoma of the lung, a diagnosis I will now deal with for the rest of my life.  In the past 13 months, I have been an enormous benefactor of new research gains in treating my cancer.  Although lung cancer is not rare, there is much to learn and research in all areas of cancer will benefit folks like me.  Last year, I was not well enough to ride, so my husband, Wynn, and our children, Nathan and Nina, rode for me.  I am stronger now and will ride this year because I want to help cancer research to continue.  

     Last year my family and friends were over-the-top in their generosity and it's difficult for me to ask you to donate again.  I am only able to so this because the treatment I'm on, the one that has kept my cancer from getting worse while allowing me a relatively good quality of life, is only available because of the type of research this fund raiser supports.  I realize that you are probably hit with donation requests as often as Wynn and I are, and it's not possible to donate to all of them.  If you can add Cycle for Survival to your charitable contributions, I would appreciate it.  If not, I understand and know that you will be with me in spirit as I ride.

     Thanks for your time and consideration :)

Wish me luck!

Much love,  Luna

Here's the link:

http://mskcc.convio.net/goto/ThisYearLunaRides

Starting the Year Off Right

     Today, in an effort to get 2014 off to a great start, Wynn, Nathan, Nina and I were joined by our niece, Becca, and Wynn's cousin, Neill, and his wife, Margaret, for a wonderful afternoon of cross-country skiing.  The snow fell lightly the whole time we were out and the snow conditions and temperature were perfect.  I hope it's a sign for the year to come!

                        Margaret, Becca, Nina, Wynn, Neill, me, and Nathan.

     There is nothing better than nordic skiing with folks you love on a beautiful winter day.  It's a great workout, and the biggest bonus of all - I don't feel sick when I'm out on the trails.  My fingers are crossed for a great skiing season... tons of snow and temperatures in the high 20's.  

A New Year!

     It was December 14, 2012 that I took my first step on this unexpected cancer journey.  Sheesh...what a year it's been.  As I look back over the past 12 months, I'm surprised how I feel about them.  It's not all doom and gloom.

     Although the peaks and valleys of this year's highs and lows have been extreme, the net amplitude has been much like other years.  No doubt this has been a very challenging year for my family and me, but in looking back, I don't think it's been more difficult than other difficult years I've weathered before.  The years that Wynn's grandmother, my father, and Wynn's mother died were very traumatic times for us.  The grief of those losses lasted for many months and rather than just disappearing, that grief seemed to only be able to slowly fade away as time passed. 

     
     When I first learned of the advanced stage of my cancer, I grieved.  I initially gathered information from the internet and expected to live no more than a year.  Soon after getting diagnosed, I was on the medical Autoban getting blood drawn, biopsies, CT scans, and MRIs.  In the mean time, I was on a traditional IV chemotherapy that was draining me of both energy and hope. 
 
     But, by the beginning of March, I was on an oral chemotherapy that has given me the opportunity to feel like I am truly in this game...if not to win...I have the confidence to be able to bob and weave my way as close to the end-zone as possible, for as long as possible. Unlike other times of grief, this time my grief seemed to be lifted away with every day that I gained normalcy on Xalkori.

     So, the really awful part of my 2013 lasted about two-and-a-half months.  Since then, my overall feeling of well-being has only gone up.  The last nine-and-a-half months have been pretty good.  Not great, but pretty darn good.  Good enough to look forward to 2014!

     From the bottom of my heart, I wish you all a Happy and Healthy New Year!! 

It's My Birthday...

...and I am so glad to be here to celebrate!

I hope you can join me...do a dance, raise a glass, smoke a joint.  Whatever you would do to celebrate, please do one for me!

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.