Caroline's Breast Cancer Blog

Solitude      Almost every year I take a week off from work to attend an educational genetics conference.  I go to get continuing education units to keep my board certification current and to spend a few days with old friends.  This year our conference was in Salt Lake City.  If you've never been to Utah, consider putting it on your bucket list.  The mountains are so beautiful and there are interesting sites to see...the Mormon Temple and Tabernacle, as well as, the Family History Library.        The mountains in the surrounding area have great ski resorts.  Earlier this season, Wynn and I went to Lake Tahoe hoping to get in a few days of downhill skiing, but when we got there, there was no snow.  None.  Nada.  Instead we hiked, worked out at a local rec center and took in a yoga class.  So...when I had the opportunity to get a couple days of skiing in before my conference, I Vicki couldn't pa...

     This morning I had an appointment for CT scans of my chest, abdomen and pelvis.   Unexpectedly, I slept pretty well last night.  In the past, the night before my CT scans is usually sleepless.  I suppose I didn't chase sleep because I've been feeling more confident about my cancer status lately.   A patient's perspective...I'm going in...      Unlike my previous CT scans, which were ordered with IV contrast only, this time my oncologist added oral contract.  CT scans with IV contrast illuminate vessels and organs, within the abdominal cavity and pelvis region, with greater detail.  Since I have a PowerPort implanted in my chest, I don't need to do anything special prior to getting scanned because the contrast dye is injected directly into my port by the CT tech.  IV contrast is a fairly benign event, except that when it goes in, there's a distinct warming sensation that travels through my body.  Th...

             I've posted this photo before.  This sapling is growing out of an old stump and is my metaphor for the continuation of life.   I see a delicate young sapling with it's roots safely protected by the wood and deep roots of an old tree.  As corny as it is...I think the symbolism is beautiful.       This past week, our niece, Jayme, and her husband, Andy, had their first baby.   Meet Asher Reid!   Isn't he BEAUTIFUL!            Well done, Jayme and Andy!  Mazel tov to Asher's grandparents, Bob, Eudice, Dick and Nancy.  Hearty congratulations to uncles and aunts, Larry, Leslie, Harold, Caitlin, Jenny and Jon.   

     My last blog was entitled, "My Annual Donation Request."  To date, that blog posting has received the fewest number of hits since I began blogging in December of 2012.  It's no surprise.  The title gave me away, letting readers know that I was asking for money.  I understand.  I'm not sure I would read some sob story which knowingly would end with a link for me to make a donation.  Regardless, I shamelessly let everyone know that my family and I were, again, participating in the Cycle for Survival fund raiser this past Saturday.        Look at this room jammed with 100 spin cycles!  Each cycle had a rider on it for four hours straight.  The music was loud and the instructors, (on the elevated cycles to the left,) were energizing.      Scanning the room as I rode, I was brought to tears.  Most riders were there because a loved one died of cancer or is currently battling the dise...

On Saturday, February 21st, my family and I will again be participating in Cycle for Survival , a fund raising event for research at Memorial Sloan Kettering Cancer Center. This fund raiser was started by a woman, Jennifer Linn, and her husband, David.  Jennifer was diagnosed with a rare type of sarcoma in 2004 and died in 2011.  She was an avid spin cycler and together with David they created an incredible fund raiser to support research for rare cancers at MSKCC.   My family and I came to learn about this fund raiser because David is a relative of my sister-in-law, Debbie, and my brother-in-law, Bob, is a close friend of David's uncle.  (It's a family thing...)  In any case, Bob rallied our family to participate in this fund raiser shortly after I was found to have metastatic lung cancer.   This event raises money for research into rare cancers.  Lung cancer is the most common cancer.  However, cancer researchers and scientists now s...

I need your help. There are newly proposed FDA regulations requiring approval for "lab developed tests", (LDTs).   Although these regulations will apply to all LDTs,  I'm particularly concerned because these regulations could have significant consequences for cancer patients.  Approval of LDTs can take years. I fear that those of us with advanced cancer will die waiting for the approval of tests that have already been validated; proven to be accurate, sensitive and specific. These regulations will put the brakes on breakthrough testing which leads to new treatments and potential cures.  I am alive only because of new science and the testing and treatments that have followed.  These regulations would be a huge step BACKWARDS.  I know , one day, my medication will stop working and I will need testing  to guide my doctors in a new treatment direction.  I will need this testing  quickly and, potentially, would not be able to get ...

The Preamble:      For the past 22 months, I've been taking Xalkori, an oral targeted chemotherapy, to treat stage 4 adenocarcinoma of the lung caused by a ROS1 mutation.  Since being on Xalkori, cancerous tumors in my lung, liver and bones have not only regressed but have stayed, miraculously, stable.  I know this because every month I have blood drawn for tests which measure tumor markers, (CEA and CA19-9,) and every three-four months I have CT scans.   In the past, I've also blogged a lot about the uncertainty of how long Xalkori will work for me and how incredibly nerve-racking it is to not know when it will stop keeping my cancer at bay.         Last September Wynn and I flew to Boston for a patient forum to learn about the next steps in lung cancer treatments for folks with ROS1 mutation driven disease.  The information we learned was supposed to be the foundation to build the framework for a plan - what ...