Tuesday, February 4, 2014

The State of the Lunion, January 2014

In keeping with President Obama's recent State of the Union Address, I was inspired to update you on my status since I my last State of the Lunion Address  6 months ago.  Also, the last time I wrote a State of the "Lunion" Address, I was hoping someone would note how clever I was...get it?  Lunion...a combination of Luna and Union?  I know, I know...funny things always lose their funniness when they are pointed out.  Sheesh...tough crowd...



The State of the Lunion, January 2014


     It's hard to believe that's it's been over a year since I was diagnosed.  Time passes fluidly when I'm not thinking about my illness.  It passes awkwardly when I think about my cancer and treatments over the past 13 months.  Events of the past year have been book marked similarly to time references such as "B.C." or "A.D.".  In my case the time references are B.H.L., (Before Hair Loss)  and A.X., (After Xalkori).  

      Since I started Xalkori, my hair has generously grown back in.  It was pretty sparse from February through July of last year and I wore a wig or a baseball cap whenever I went out.  At the suggestion of other cancer ninjas who swear by it, I took biotin, a vitamin that supports hair and nail health.  Although my hair is much grayer than I recall it to be, it is also much thicker.  I've decided to keep it short for two reasons;  it's very easy to take care of and, if in the future I need to start back on an IV chemotherapy that will cause my hair to fall out again, I'd rather it be short.  

     I'm still taking Xalkori, the oral chemotherapy which I started in March, 2013.  Thankfully, Xalkori is still keeping my cancer in check for now and the side effects have been very tolerable for me.  I understand that some patients on long term Xalkori therapy have reported hot flashes, edema and neuropathy.  Despite being really happy with the benefits I am getting from it, I do believe I am experiencing these side effects...mildly, so far.  Other known side effects (such as nausea, G.I. problems and dizziness), have gotten much better, although waves of nausea are a new normal for me.  My last CT scans were encouraging.  My lung tumor, (~3 cm in diameter at the time of diagnosis), is no longer visible, which means that, if it's there, it's less than 5 mm in size.  The multiple metastatic tumors in my liver were fewer and smaller.  My most recent bone scan showed some relatively significant mets in my left hip/pelvis, but overall, was much improved over the bone scan I had a year ago. 

     My strength has improved, A.X.  Just before I was diagnosed, I felt pretty fit and strong.  During the two months I was on an IV chemotherapy, I definitely became weaker.  However, since starting Xalkori, I've regained some strength because it's allowed me to exercise several days a week.  I recently joined a yoga class and have gotten in many X/C ski days.  I continue to work, part-time, but have prioritized spending time with family, friends, and especially my 85 year-old mother.  
 
     Right now the most prognostic factor for me is that I feel good.  It's relative.  I feel tons better than I did a year ago, but not as great as I remember feeling two years ago. I realize that I won't have success with Xalkori forever, but for now, it's giving me more time.  Knowing that I have bad cancer, more time...whether it passes fluidly or awkwardly, is what I want. 


 

     Other updates since my last State of the Lunion Address:  Nathan graduated from the University of Wisconsin-Whitewater last December.  We are so proud of, and happy for, him.  Although he loves his current job, he's looking for a better paying one.  Nina's working as a scribe in an E.R., and has been admitted to medical school for the Fall.  She is still in the process of deciding which school she will attend. (I'll keep you posted about her decision.) Wynn is well and since we've had so much snow here this year, he has been X/C skiing like a mad man.  Despite the sub-zero temperatures around here, he goes as often as he can, sometimes before work.   On days when the temperature is above 20 degrees, I'll always go with him.  It's a wonderful sport that he and I love, and we love doing together.  This year we finally convinced Nathan and Nina to join us and so far, so good. 

  

Monday, January 27, 2014

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.

Thursday, January 23, 2014

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

 

Tuesday, January 14, 2014

Cycle for Survival: This Year I Ride


Cycle for Survival

       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:


Wednesday, January 1, 2014

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.