Caroline's Breast Cancer Blog

     I love living.  It's fun...mostly.  Having stage 4 lung cancer isn't fun, however.  It's a hassle and annoying. Everyday I have to remember to do certain things to increase my chances for living longer.  Entered into my iPhone are five daily alarms for medications and vitamins.  I space them out because some medications I need to take at a specific time with food, while others I need to take two hours before or 2 hours after taking other medications. I have an alarm for a medication I take once a week.  I have scheduled appointments with my oncologist and get an IV infusion of a bone strengthener once a month...and...every four months, I get CT scans of my chest, abdomen and pelvis to see if any tumors have started to grow back.        Most of my fellow stage 4 lung cancer ninja friends get scanned every three months.  It's standard.  In the beginning, I did too.  However, CT scans expose us to a l...

     Although my family and I took many nice vacations before being diagnosed, having serious cancer makes it easier to take the time and spend the money to travel.  Not only is Wynn is on-board with this notion, he encourages it.  In October we spent nearly two weeks in Spain. Neither of us had ever been there so we were excited about this new adventure.  Federico, tour guide extraordinaire            Because we'd had such a positive experience on our Rick Steves tour to Italy in 2013, we decided to sign up again.  He didn't let us down!  Our main tour guide, Frederico, was terrific.  He's so knowledgeable and shared much of Spain's history through well-crafted and well-executed storytelling. Our group had 16 members, mostly from the U.S.; two were from Canada and two from Australia. Like before, this was a really great collection of interesting people.        ...

     Until a few months ago, I didn't know that November is LUNG CANCER AWARENESS MONTH.  Apparently, not many other folks know this either. On October 1st, the first day of Breast Cancer Awareness month, there were splashy pink television, magazine, radio and newspaper public announcements letting us know how common breast cancer is, how to get screening mammograms and where to seek health care services.  They are wonderful notices...women telling women to take care of themselves. The iconic PINK RIBBON speaks for itself. Other than from lung cancer survivors, on November 1st, I didn't see any bump in lung cancer public announcements.       I've wondered why lung cancer doesn't get the same attention that breast cancer does. I've wondered because:  ...lung cancer is the leading cause of cancer deaths among both men and women, ...it causes more deaths than breast, colon, prostate and pancreatic cancers  COMBINED, ...20% o...

The Cholesterol Update:      Back in August I posted an optimistic blog entitled, "Reading Between the Lines": http://lunaoblog.blogspot.com/2014_08_01_archive.html I wrote, enthusiastically, about getting to re-start a cholesterol lowering medication.  My targeted chemotherapy has been working long enough that I didn't want to forget about other health issues.  Who knows, maybe there's a possibility that I may live long enough to worry about cardiovascular consequences of untreated high cholesterol.  So, in August, I started on a low dose of atorvastatin, (generic Lipitor), with the idea that we'd monitor my lipids and liver enzymes and make any needed adjustments.  I was feeling pretty damn cocky that I got to start back on atorvastatin.        A couple weeks ago I had follow-up blood tests to check my lipid profile and liver enzymes.  Great news!  My lipid profile was completely normal.  My cholesterol va...

       Today I received an email from my oncologist about the phase 1 clinical trial data for lung cancer patients with ROS1 mutations who are on crizotinib, (Xalkori.)  The article and data were just published in the New England Journal of Medicine.       I knew that Xalkori was fast tracked by the FDA for patients with ROS1 mutations, which means it was released for use prior to the completion of the clinical trials.  The FDA sometimes does this because trial participants are doing so well on the drug and there's previous reassuring data for its use from some other study.  What I didn't understand is that it was released prior to the completion of phase 1.  (There are usually three phases of a clinical trial before a medication is approved by the FDA.)      In any case, for those interested, it's an interesting article: http://www.nejm.org/doi/full/10.1056/NEJMoa1406766?query=featured_home

     One would think that after returning from the cancerGRACE Patient Forum in Boston on September 6th and after learning about new medications I can try when Xalkori stops working for me, I would feel more relaxed.  Initially, I did feel better about my future options.  On most days, I still feel relief that there is a new targeted therapy that I can try, (if/when I need it), and also another one which is expected to be FDA approved in the next couple of months.  I learned about other targeted therapy and chemotherapy strategies that clinicians are using for patients like me.  However, I've also found myself thinking about what these medications and strategies really mean for me.       When I was first found to have stage 4 lung cancer, the words "terminal cancer" hit my ears and began to come out of my mouth. I actually heard myself saying, "I have terminal cancer" and, "There is no cure for me."  I just Googled "t...

      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 ...