Caroline's Breast Cancer Blog

     It's been nearly 3 months since my last blog.  I've discovered that, like many things in my life, the longer I take to writ e a blog post , the harder it is for me to get it done.  I don't like using the "I've been so busy" excuse, but really...I've been so busy.  S o I'm t r ying to catch up. ..      In August, Wynn and I made a trip to Denver, CO for the CancerGRACE Lung Cancer Patient Forum for EGFR, ALK, and ROS1 driven disease.  Like other patient education sessions we have attended in the past, we learned so much. The most meaningful information I heard is that there are now 7 new medications that are either in phase I or II clinical trials, or will soon be, that I may be able to try when Xalkori stops working for me. This news, literally, made me teary-eyed.  Since starting on Xalkori over 3 1/2 years ago, there has been no "next drug" for me to access.  I 'm on the latest and greatest thing , and I ha...

Crocosmia from my garden      Definition of "head game":  any deceptions or tricks designed to confuse or manipulate a person.       W hen one hears the words "head game" one usually thinks th at these words are referring to a certain psychology of an issue - at least that's my take on the phrase. Recently, for me there's a double entredre to the term . Let me exp lain:      I had a bit of a scare this past week...      On Monday I had abdominal pain in the area around my liver.  I also experienced nausea after eating.  Although neither symptom was  as intens e as when I was first diagnosed, the pain was in the same part of my body and coupled with nausea, brought me back to the day I was diagnosed with metastatic lung ca ncer .  I was in daily contact with my oncologist over the past week, reporting to him how the symptoms seemed to be mild er, but persistent....

     It has now been three years and five months since I was diagnosed with stage 4 adenocarcinoma of the lung.  It has been three years and two months that I have been taking Xalkori, the oral chemotherapeutic agent that has kept me around this long.  I was taking Xalkori for three years prior to it being FDA approved for ROS1 mutation driven lung cancer.  On March 11, 2016, Xalkori was approved - which doesn't change much for me, but will make the medication more accessible to those whose insurance companies denied coverage for it because it wasn't approved.   http://www.businesswire.com/news/home/20160311005839/en/XALKORI%C2%AE-crizotinib-Approved-U.S.-FDA-Treatment-Patients California poppies...one of my favorites.      The clinical trial for Xalkori use with ROS1-mutation driven lung cancer found, that for patients like me, the median "duration of response", (the time the medication worked before it stopped working), is 1...

     It's nearly impossible for me to believe it's already mid-April of 2016!  Since January, life has been a whirlwind of good and not-so-good things.  I've come to realize that whether it's good times or bad times, being busy is being busy.  Time escapes me.          Today has been a good...no...let me start again...Today has been a GREAT day, so I'm not going to whine about anything.  Springtime in Chicago is unpredictable - sunny and warm or cold and snowy, in the same day.  This spring has been predictably unpredictable, but today in Chicago was beautiful . Although it was a little windy on Michigan Avenue, it was sunny and the temperature was around 50 degrees.      I got to do one of my favorite things today.  Wynn and I took our day off and made our way to the Art Institute to see a special exhibit:     Van Gogh's Bedrooms      http://www.artic.e...

     All month, I've been trying to find time to write my next blog about how I've been doing, overall.  It was supposed to be my 3rd annual State of the Lunion Address.  Unfortunately, a few things have recently happened that have overridden that plan.      Many of you know my mom.  She's 87 years old and nearly 20 years ago, following the unexpected death of my father, she moved to Illinois to be closer to us.  She bought a townhouse 5 blocks away from our house and when our children were young , she was incredib l e in helping Wynn and me care for them.  Through her 85th year, she was fiercely independent, strong and healthy.  Then in 2014, she had a stroke, and many things changed for her...and for me.  We found a wonderful caregiver, who stays with her Monday through Friday.  On the weekends, my mom would come and stay at our house , where we felt comfortable leaving her alone for a few hours at a t...