Tuesday, September 9, 2014

A Day with Lung Cancer Experts

      Back in June, lung cancer patient advocate extraordinaire, CraiginPA (his online handle), let me know about a lung cancer education conference for patients in Boston on September 6th. The focus of the conference..."acquired resistance,"  a subject near and dear to my heart lungs. ("Acquired [drug] resistance" occurs when a chemotherapy no longer works to control cancer growth, after it has worked for a while.)  With my oral chemo, Xalkori, there seems to be some variability in how well it works, how long it works and which side effects users experience.  However, the common fact for all patients on Xalkori is that it won't work forever. Some patients see benefits from it for only a few months while others have been successfully treated with it for a few years.  Why Xalkori works longer for some patients and not for others is unknown.  We know, from clinical trials, that when Xalkori is stopped, the cancer tends to come back quickly...aka a "cancer flare." 

     Knowing that one day Xalkori will stop working and that my cancer may grow back quickly has always frightened me.  Having the opportunity to learn what my options will be when that day comes seemed like something I couldn't pass up.  So, this past weekend Wynn and I traveled to Boston to attend the Cancer GRACE's Acquired Resistance Patient Forum for patients with lung cancer due to EGFR, ALK and ROS1 mutations.  


     For as much as I was looking forward to this conference, the night before I wasn't able to fall asleep.  I was awake worrying that I would sit through a day of lectures and at the end I would be told that there is nothing for me.  That's not what happened... 

ROS1 mutation attendees
     It was an amazing day.  There were about 100 registrants, eight of us with ROS1 mutations.  The speakers were the Who's Who among clinical researchers in the field of lung cancer caused by EFGR, ALK and ROS1 mutations.  I pinched myself as I listened to these lung cancer ROCK STARS.  They told us how acquired resistance happens, what we should do when we experience drug resistance, and how best to transition to a new medication. We learned about the new medications that are now FDA approved and available for us to use next, and about new medications that are expected to be FDA approved in the next couple of months.   They even had a speaker from the FDA who explained to us how medications get approved, how they become "fast tracked" and thus available prior to the completion of a clinical trial because trial participants are doing so well, and why some medications don't come to market because they are found to be unsafe.  (Think thalidomide.)  It's good for cancer patients, who may become desperate for a new medication, to have some understanding of the difficult job the FDA has.  After lunch, we were divided into smaller groups, by mutation, and we met with the experts doing research in those areas.  They told us about their work, clinical trials that are available or coming up soon, and we had the opportunity to ask questions.   

     Here are a couple of things I learned that I'd like to share with other Lung Cancer Ninjas:

1)  The Bonnie Addario Lung Cancer Foundation has partnered with the Norris Comprehensive Cancer Center at USC to study lung cancer in young individuals.  If you were diagnosed at <40 years, please consider participating.
Check out:

2)  The next Cancer GRACE Patient Forum will be in Chicago on October 26, 2014.  The focus will be Immunotherapy for the treatment of melanoma, lung and kidney cancers.  Check out:


      There's one last thing I need to mention.  I met many incredible lung cancer patients, and those that love them:  Tori, Beth, Craig, Carole, Andy, Kris, Nicole, Maria, Bernard.  Their cancer stories were heart-breaking.  Everyone I met, like me, is a non- or never-smokers.  Some of the people I met were diagnosed in their 20's and 30's...one at age 18 years, a freshman in college.  Sh*t....I thought I was young.  The single risk factor we all share?...we have lungs.  I learned that if you have lungs, you can get lung cancer. 

Thursday, August 28, 2014

Reading Between the Lines

     Earlier this week I had my monthly appointment with my oncologist, Dr. O.  Since things are going well for me, the appointments over the past several months haven't been very news worthy.  At this appointment, however, I told Dr. O. about my mom's recent stroke.  All of her testing results are telling my mom's doctors that her elevated cholesterol level is likely the greatest contributor to her event.  I have the same lipid profile as my mom and up until I was diagnosed with cancer, had been taking a cholesterol lowering medication, a "statin," for over 20 years.   

     Cholesterol is a fat, a lipid, manufactured in our bodies.  It's necessary for normal body functioning, such as cell membrane growth and maintenance, and it plays an important role in the manufacturing of hormones.  Most of the non-dietary cholesterol in our body is made in our liver.  Most cholesterol lowering medications work on our livers to make them produce less cholesterol.  Sometimes, however, the medications can cause liver problems.

     Back in December of 2012 and January of 2013, when I was first diagnosed, all of my liver labs were really abnormal.  I looked back at my initial lab results while writing this blog.  My heart fell to my stomach as I noted how abnormal the values were.  My poor liver.

       In the early days of my cancer diagnosis, I was told to stop taking my statin because I needed to do my best to preserve my liver.  Reading between the lines, I got the message that...
#1...high cholesterol was the least of my problems, and 
#2...it was unlikely that I'd live long enough to ever have to worry about any cardiovascular problems due to elevated cholesterol.

     Earlier this year I had a fasting lipid profile, which included cholesterol testing.  As expected, my cholesterol was pretty high.  In discussions with my internist and oncologist, I decided to stay off of a statin, fearing it would still be too much for my liver.

     Fast forward to August of 2014.  My liver labs are normal and have been for over a year, (What a come back!  Thank you, Xalkori!,) and my mom has had a stroke.  I feel like I need to re-think a few things.  What if I really live longer than anyone expected?  I'd sure hate to look back and wish I'd taken a cholesterol lowering medication.  
     So, I brought this up with Dr. O.  He thought for a minute and decided I can start back on a low dose statin.  I'll continue to monitor my liver enzymes and lipid profile and adjustments can be made, if necessary.  

     This time, reading between the lines, I'm getting a different message:

Writing a prescription for a statin for me is a greatly appreciated show of confidence from my doctor. 

      It made me feel like I may live long enough to have to worry about a stroke from elevated cholesterol.  My mom's almost 86 years old and living that long still feels unlikely, but no longer like a total impossibility.

Tuesday, August 26, 2014

What Your Cycle for Survival Donations Have Done:

I received this, (below), in an email a few days ago.  It's addressed to me, but I want to share it with my friends, family, friends of family and friends, acquaintances - anyone who was generous enough to make a donation to Cycle for Survival for my team, TEAM SHEADE, and me.  Look what you've helped make happen!  Across the nation, the 2014 Cycle for Survival event raised $20 million...let me repeat that a little louder...$20 MILLION!


You rode at Cycle for Survival in 2014 because you wanted to fight back.

Thanks to your passion and dedication, we’re excited to announce that every dollar of the $20 million raised by Cycle for Survival has now been allocated to pioneering research led by Memorial Sloan Kettering Cancer Center.
2014 Funding Allocation
Click here to learn more about these efforts
Following a record-breaking year, this funding allocation represents the largest impact Cycle for Survival has made to date. Not only are we able to continue to support groundbreaking research initiatives and clinical trials, but also we’re now able to contribute significantly to large efforts that are changing the way cancer is studied and treated.

On behalf of all of the cancer patients around the world who will benefit from these advancements, we truly cannot thank you enough for all you do to beat these diseases.
Katie Klein
Katie (Kotkins) Klein

P.S. We sent an email about these projects to all of your donors, but we encourage you to follow-up with your network of supporters directly in-person, over e-mail or on social media. It takes each and every one of us to move research forward!

cycleforsurvival.org  •  888-72-CYCLE
Memorial Sloan Kettering Cancer Center
633 Third Avenue, 4th Floor, New York, NY 10017
Financial Disclosure  •  Unsubscribe

You have no idea what this means to a person who is certain she's still alive because of advancements in cancer research that can only happen because there are research dollars to support it.  I know I've said it many times before, but please allow me to say it one more time, as loud as I can...


                                         With much love and gratitude, 

Tuesday, August 12, 2014

Good Thing I'm OK Right Now

It's been a challenging week.  A little over a week ago my 85-year-old mother experienced a stroke.  Actually, it's unclear if she had a TIA, (transient ischemic attack), or a small stroke because her clinical course and brain imaging are inconsistent.  I suppose it doesn't matter much.  Either way she's facing a recuperation time.  Following a short stay in the hospital, there has been a steady stream of appointments, small setbacks, more appointments, and lost work time for me. 

My mother immigrated from Japan in her 20's, following my father's dream of working as an architect in the U.S.  I've gathered, over the years and through her stories, that she never wanted to leave her family in Japan.  When she did, she did not expect to be here permanently.  The year I started elementary school, she got a job and worked straight through retirement. She's always been independent with a "can do" attitude about life.  This spirit served her well as she resigned herself to living in America and raising two daughters...American daughters.

In her senior years she's remained independent.  Even up to last week, she drove, grocery shopped, cooked for herself, and did her own laundry.  Her health has been (relatively) excellent and only recently have I noticed some age-related memory decline.   

A few months ago I had an appointment with my internist.  One of the many background questions he asked me was, "What's your biggest stressor?"  To his surprise, I didn't say cancer.  My greatest worry was/is my mother.  She lives near us and, for years, helped Wynn and I with our children.  Now, I struggle with how best to make her elderly years good ones. 

I know that dealing with aging parents is nothing new.  The fact that there are so many resources for senior care and assisted living options speaks to how common these issues are.  We are fortunate to have access to good services.

Although she is very tired and weak, she seems to be slowly recovering.  It doesn't seem like she has any permanent loss of function of one side of her body, so the physical therapy is going well.  She's been very sweet about trying to minimize her needs.  

The good news for me is that right now I'm doing well...I'm strong and healthy enough to juggle my complicated life.  I can't imagine how this would be if it happened a year ago.


If you have any extra GOOD KARMA hanging around, maybe you can send it my mother's way.  We'll be happy to return the favor sometime when your life gets complicated. 

Thanks :)