Wednesday, September 30, 2015

My Lung Cancer Community

     In the past, you've heard me blabbing about how grateful I am for cancer researchers who, not only discovered the ROS1 tumor mutation that is causing my cancer, but who also found a drug, a pill, that manages to work around the mutation allowing the gene to function properly. Thus my tumors shrank and have remained stable for over 30 months.  

     I recently realized that I've barely mentioned my LC community.  This group is made up of other lung cancer patients, the people that love us, and in some cases, our doctors.  I'm connected to them through the internet by way of several online resources:,, and  Additionally, I'm Facebook friends with many, and am in a couple FaceBook groups.  One of my FaceBook groups is 'closed', open to only ROS1 mutation patients and our caregivers.  I've met some of my friends in person at lung cancer meetings, but most I have not met yet.  Although most members of our ROS1 group live in the U.S., we have international members who let us know about their treatment options in their home countries. 

     As in any social group, there are leaders that rise to the top.  This is no different for my lung cancer community.  Our leaders are amazing advocates for us.  They are smart, articulate, well-read, well-written, organized, organizers, and have networked with clinicians, researchers, educational organizations, and fund raising organizations. Tori, Janet, Lisa, Craig, Lysa, and Stuart are a few ROS1-ers that contribute a bunch.  


     I am grateful for my LC community.  It is through this group I have been educated, enlightened, and supported.  Most members let us know when there are changes in their health statuses and share the information they gather from their doctors. I've learned so much from those who are walking my journey...a few paces ahead of me.   


     This week, an LC community leader and my friend, Tori, learned that she has three small tumors in her brain.  She bravely blogged about this:  


     Tori was diagnosed after me and, like me, has been doing wonderfully on Xalkori.  Her brain mets were found on a routine MRI and thankfully, she is asymptomatic.  Although there is a good option for treating the brain mets, and for overall treatment as she moves forward, her news hit me like a ton of bricks. It felt as if I was slugged in the chest.  She is young and has three young children.  She is needed by her family, let alone by our LC community. I will be sending Tori all the good karma I can spare.  Maybe you, too, can send some extra her way? 

Monday, September 21, 2015

CT Scans #10-Update, and more...

     Since the beginning, and for about two years, I had my blood drawn every month to check the level of my tumor markers.  Tumor markers  give me an indirect indication about the activity of my tumors...low levels indicate low or no growth, while elevated and/or rising values raise the concern that my tumors are growing. Additionally, every three months, I had CT scans to visualize my tumors and assess if they were growing, shrinking, or staying the same, (aka "being stable".)  

     I've always been bothered by having too many CT scans.  Certainly, it has been reassuring to know that each time I've had scans, so far, I've been told that my tumors are either shrinking, or are stable.  However, CT scans expose me to radiation, and although I've read that the increased risk of radiation induced fatal cancer is low, I never want to increase MY risk for more cancer...I already have plenty. Last year I negotiated with my oncologist and we settled on CT scans every 4 months.  Reducing my radiation exposure by 25% felt good, and do-able, as long as my tumor markers remained low.  

      Then, last April I went to see one of the leading researchers in ROS1 mutation driven lung cancer, Ross Camidge, MD, PhD in Denver, CO.  Dr. Camidge has been studying the value of tracking tumor markers and told me that he is comfortable having my blood drawn every 2-3 months and if the markers are within normal limits, having CT scans every 6 months.  THIS was exactly what I wanted to hear...or so I thought.

      Having CT scans less frequently has it's pros and, at least, one con:

  1. Of course, 50% less radiation exposure.
  2. I found that, between the tests, I thought about cancer a little less.  Along with keeping fewer appointments, I also didn't have to juggle other things in my life (work, caring for my elderly mother, and having fun,) to schedule my appointments around. 
  3. Fewer tests means fewer insurance pre-authorization hassles and fewer bills.  
  4. I also discovered that I needed to call on an inner strength that would allow me to tolerate a longer time between tests.  I convinced myself that if I could wait an additional 3 months before a CT scan, I would be proving to myself that I was confident in my medicine's ability to keep my cancer at bay.  (This was a "head-game" that's part of the mind-body-spirit B/S that I occasionally blog about.  To be honest, I floated this point between the 'pro' list and 'con' list and decided it probably a 'pro'.)
  1. Every once in a while, I'd have a bad day and was certain my cancer was growing again. I'd count on my fingers how many months away my next CT scans would be.  I wondered if I shouldn't call my oncologist and tell him that I was wrong...that I prefer more radiation.  I found myself saying  that old adage, "Be careful what you wish for, Lu."
     Well...I was able to stick it out.  I had CT scans last Friday, 6 months after my previous scans.  I was right to wait.  My tumors continue to be stable and there doesn't appear to be any new tumors.  WAHOO!  

     [BTW...I think I overlooked mentioning that last July I had a brain MRI was normal, meaning that I don't have metastatic disease to my brain.  DOUBLE WAHOO! WAHOO!  This is particularly good because Xalkori doesn't cross the blood brain barrier, so it doesn't protect it.]

     Here are a few photos from the end of summer:

White Sox game with Tom and Terri!

Chicago Skyline from inside the Chicago Art Institute

Showing visitors Chicago is always a pleasure.  It's fun and beautiful.
At 'The Bean" with life-long friend, Stacy.

Cirque du Soleil, Kurios - a great show with great friends, Jerry, Stacy, Brigid

Outdoor art in Chicago is amazing.  The Picasso is only one of many.

Friday, August 14, 2015

A Busy (and fun) Summer

It's been a while since I've blogged and that's a good thing.  My health, (both the cancer thing and my knee injury,) has been good so I've been busy taking advantage of the nice weather we've been enjoying in the Chicago area.  We've traveled some, making it to weddings and a weekend get-away to the eastern shores of Lake Michigan.  Although our summer fun isn't over yet, here are some recent photos...

In late-May, we went to Omaha for Emma and Andrew's wedding.  The special wedding guest was 'Smokin', Emma's family's pet turkey.  Oddly, as far as pets go, he's a pretty cool one.  It was nice he put a bowtie on for the ceremony.  

These are Emma's parents, Roger and Denise.  Denise and I have been friends since grade school. 
Sloan, me, Mike, Dale and Dan

Long time friends from Omaha met for dinner.  We forgot to take a photo earlier in the evening when everyone was there, but here are the last few. 
Thanks to Tom, Terri, Mark, Diann, Tim, Lisa, Kathy, and Cindy (all not pictured) for coming out for a great night of catching up.


                                Brunch with old family friends, 
                                Jeri and Tsutomu

We've had ice cream with Hyat and his family at Daisy's, the new ice cream shop in Palatine.  

Wynn, Nina and I drove to Saugatuck, MI for a long weekend.   Kayaking on the Saugatuck River near Douglas, MI was so relaxing.  The water lilies were beautiful.

Anita, a childhood friend, was in town with her son, Will.  We met them for dinner at the Signature Room in the Hancock Building in Chicago.

Dear friends, Pat and Chuck's son, Dan, married Liz in a barn, in West Bend, WI.  It was our first barn wedding.  Chuck's home brewed ales were a hit and Liz's homemade hand pies were amazing.  We had a blast!


We have been eating really well this summer.  We are members of a CSA (community supported agriculture).  Weekly, I pick up a box chocked full of organic, locally grown, veggies from our farmers' market. Look at this food!  I'm sure that this is helping fight the cancer battle. 

I'll post again as soon as I can.  If I don't get to it for a while, it's 'cause I'm out having fun and too busy to blog.  (Either that or I'm napping in between the fun.) 


Monday, June 8, 2015

Excitement at ASCO

     Each year, around this time, the American Society of Clinical Oncology, (aka ASCO,) holds their annual meeting.  It is at this conference that great minds in clinical oncology bring the latest data and information they have gathered from their research and present it to other oncology care providers, and the rest of the world.  I don't know if it's always held in Chicago, but last year, this year and next year, have been, and will be, in our Windy City. The 2015 conference was May 29th-June 2nd.

      Although I knew about the 2014 ASCO meeting last year, I didn't know that non-providers or non-clinical researchers could attend.  A few lung cancer ninjas that I know went last year and reported back to us on medications that were either newly available or in the pipeline, and other breaking news.  

      I wanted to attend this year, but Wynn and I were invited to a wedding, so we were out-of-town that weekend.  I knew that I could learn the information presented at this year's ASCO meeting from others who attended, and that I would regret missing the nuptials of the daughter of a dear childhood friend. 

     Following this year's meeting, on June 4th, Nathan A. Pennell, MD, PhD wrote an article for the ASCO networking website called Connection.  Dr. Pennell is an oncologist and director of the lung cancer medical oncology program at the Cleveland Clinic.  He did his fellowship at the Dana-Farber Cancer Institute - Harvard Medical School, and his PhD is in neuroscience.  I mention a few highlights from Dr. Pennell's bio to make the point that the guy probably knows what he's talking about.  His article is entitled:  View from the Podium:  Lung Cancer Finally Gets Its Moment at ASCO2015.  Here's the link if you're interested in reading it:

"Immunotherapies, whoa-ooo-whoa."

      This article is seven paragraphs long, not too technical and made my heart SING....LaaaaaaaaaH!  Pennell described the buzz and excitement among the ASCO attendees about new immunotherapies showing great promise for lung cancer patients.  (Immunotherapies are medications used to boost the patient's own immune system to combat the cancer.) The response rates are good and overall survival (OS) rates are much improved over previously used chemotherapies. He wrote the sentence, "It was magical," to describe the excitement he felt knowing that he could bring this good great news of a new treatment option back to his patients.  

      I figure if Dr. Pennell is excited and optimistic about the future of immunotherapies in lung cancer, then...SO AM I!

Sunday, May 24, 2015

Glancing Back While Moving Forward


     A year ago I wrote a blog entitled, "Decreasing Urgency."  At that time, it had been about a year and half from when I was diagnosed with advanced cancer, and because my medication was controlling my disease well, I was able to feel some relief, and hope.  I realized that I was moving away from my initial sense of panic, that was driving me to try to get things done quickly...before I lost my chance.  I wanted my children, both in their twenties, to "ripen" before I died.  I was secure that I had mothered them as best as I could, but there were a few things I still needed to tweak.  I needed to get my house in order - organizing my belongings and getting rid of unused "stuff" that had quietly, and insidiously, accumulated in our basement. My last quest was to create as many memories for Wynn, unrelated to my illness, as I could.

     The priorities I had a year ago are still very important to me.  Nathan and Nina are moving forward in their lives and I am so very happy for them both.  I see that they are continuing to surround themselves with support systems that will, without a doubt, help them negotiate life's ups, and downs.  It is incredibly comforting to I am sure it would be for all mothers.  I continue to want to have as many shared experiences with Wynn so that he can look back and know how happy I was to be his wife.  Over the past year I have come to appreciate that Wynn, too, wants to have  shared experiences with me.  He goes to great effort to make sure I know that I am loved.   

     Along with making sure Nathan and Nina are headed in the right direction and that Wynn knows how much he means to me, the third priority was dealing with the junk in my house.  So last weekend, together with my next door neighbor and dear friend, Brigid, we had a garage sale.  Although I've been told that garage sales can be money makers, our goal was to make sure we brought nothing back into our houses.  Therefore, everything was priced to sell.  Most items were less than $5.00, many items were less than $1.00, and we ran 2-for-one specials, as needed.  We made sure each visitor knew to "Make an Offer" on anything they were interested in. 

     The weekend was a success.  Brigid and I unloaded most all of what we brought out to sell.  That old adage, "One man's trash is another man's treasure," is so true.  We could not believe what people bought. getting rid of a lot of old and unused stuff, we both profited beyond our expectations.  At the end of Sunday, there were a few things that did not sell.  We loaded them into our cars and drove straight to the Goodwill Donation Center.  It was beautiful.

     Preparing for a garage sale required a fair amount of planning and work.  In
lieu of Mother's Day gifts, I asked my family to help me clean the garage and drag tables and crap out of the basement.  (I'm pretty sure they would have all preferred to buy me flowers and a card.) Sorting through nearly 30 years of accumulated crap is definitely not for sentimental types. There were items that I clearly wanted to hold onto to, however, when I came across something I wasn't sure about, I reminded myself that I will likely have a shortened life...and since that's the case, I wanted to be responsible to my family so as to not add the burden of cleaning out my crap on top of my absence.  

     As you can imagine, going through our things brought back many, many memories.  I came across something that gave me pause and I sat down, for over an hour, as I was drawn back nearly two and half years.  I have a basket of get well cards and notes I received in the first few months after I was diagnosed. I opened and re-read each word that was sent to me.  I cried, not because I was reliving the fear and difficulty of those
first few months, but because I was so touched by the the outpouring of support that flooded into my mailbox. I re-read over a hundred cards, letters and notes from all over the U.S., Europe and Japan.  Some family members and friends sent more than one card and my friend, Claudia, was on a campaign to send me an uplifting card, per week, for months. 

     So...while it feels great to purge my house of junk in an effort to move forward more freely, I was reminded how these notes gave me strength back then...I didn't want to let anyone down who was sending me encouragement.   

Thursday, April 30, 2015

My Appointment with Dr. Camidge, and Josh

     Monday, after work, Wynn and I hustled to O'Hare to catch a plane to Denver because the next morning we had an appointment with Ross Camidge, MD, PhD - a lung cancer specialist at the University of Colorado.  This is the appointment I scheduled after I had a tumor marker scare, which I blogged about back in January:

     Dr. Camidge is a medical oncologist, clinical pharmacologist, and researcher with extensive experience in lung cancers that are caused by DNA mutations, such as the kind I have. There are a few clinical researchers in the U.S. that specialize in patients with ROS1 mutations, and I chose to make an appointment with Dr. Camidge because I had read that he had experience with patients who also have cMet mutations.  I have both, (or so I thought), so he seemed like the guy for me. The Anschutz Cancer Pavilion at the University of Colorado Medical Center is a large academic comprehensive cancer center, with some sort of affiliation with the National Cancer Institute.  There are two "famous" ROS1 mutation specialists there, Dr. Camidge and Dr. Robert Doebele. 

     On Tuesday morning, before seeing Dr. Camidge, we met with his fellow, Sinead Noonan, MD.  She spent nearly an hour with us reviewing my history and answering my questions.  She, methodically, responded to all of my questions and in the style I like best, explaining each of her answers in language Wynn and I could understand and digest.   

     Dr. Camidge came in later and spent another 30-40 minutes with us.  He, obviously, is incredibly knowledgeable about ROS1 and cMet and is very skilled at explaining what he knows.  He must be really good at reading facial expressions because when I became lost in his answer to one of my questions, he tried again using an analogy.  (Thanks, Dr. Camidge.)  Here's what I learned:

  1. I probably don't have a cMet mutation, in addition to my ROS1 mutation.  Having two tumor mutations is rare and initial testing results made me, and my local oncologist, think that I had both.  However, more recently, researchers have devised a better and more accurate way of testing for cMet mutations and with the newer method, it looks like I don't have cMet.  I kinda liked the idea of having a cMet mutation because, initially, it was thought that cMet mutation driven cancers responded better to targeted chemotherapies.  The data is still coming in, but it's moot for me.
  2. Per Dr. Camidge, if one is going to have a tumor mutation, ROS1 is the one to have.  As far as mutations go, it's a relatively "simple" DNA alteration that responds to Xalkori better and longer than another similar mutation called ALK.  Additionally, ROS1 driven cancers don't seem to metastasize to the brain as commonly, which is really good since Xalkori doesn't cross the blood-brain barrier, it seems.  
  3. Regarding what to do when Xalkori stops working, he said the following:
    • Still, no one knows how long it will work for me.
    • When it stops working, it won't stop working suddenly in all my suppressed tumors.  It gradually stops working in some cells in different areas and overtime, will stop working in more and more cells.  When that time comes, I'll know because my blood tumor markers will start rising and I will then get scanned more frequently, either by CT or PET, to find the "hot spots."  As long as there are five or fewer hot spots, I can have targeted radiation to "zap" those tumors.  I will do this for as long as possible.  
    • When the time comes that there are more than five hot spots on a scan, that will be the time to start a new medication.
    • Since there is no cure for my disease, the goal is to get as much time from each of my treatment medications as possible, thereby extending my life as long as possible.  
    • Right now there are two medications in Phase I/II clinical trials that are being used by other patients who have ROS1 and acquired resistance to Xalkori.  Hopefully by the time I need them, there will be much more known about these medications so I can try the best option.
  4. I asked him about the frequency of needing CT scans, because I've always felt uneasy about being exposed to such radiation every 3 months.  He and his team have been studying the accuracy of tumor markers in blood with cancer growth and they will soon publish data confirming that when cancer is actively growing, certain tumor markers in blood will rise.  Conversely, when tumor markers are low, cancer cells are not actively growing.  For me, since I've been doing well on Xalkori and ROS1 driven cancers grow relatively slowly, he is comfortable testing for blood tumor markers every 2-3 months and getting CT scans every 6 months.  Certainly, if my tumor markers start to rise, I'll get scanned more frequently. 
  5. The red hot topic in cancer treatment is immunotherapy.  Although great advances have been made in the science of cancer immunotherapies, including in some lung cancers, it's not ready for me yet.  Dr. Camidge, however, was optimistic that it's not too far away.
  6. Dr. Camidge made a few miscellaneous comments that I made note of:
  • Lung cancer patients with ROS1 mutations are rare, therefore, the data about us "dribbles in."  It may take many years to gather needed information and data.
  • He feels reasonably certain that I will have years a head of me, probably not decades, but years.  (That sure beats the matter of months I thought I had in the beginning.)
  • He has several patients with ROS1 mutations, who have been on Xalkori since the beginning of the phase I/II clinical trial, (over 3 years.)
  • If there is ever a time when I should enter into a clinical trial that he recommends, I can always see if there is a trial site at one of the big medical centers in Chicago. 
  • When I asked him how often I should make the trip to see him, he said, "When you need me. You can email me anytime, too."
  • I mentioned that I'm taking a break from my book club because I have no time to read books for pleasure.  I spend nearly all my time reading about cancer.  He looked disappointed and then told us about a great book he's enjoying by Jack Finney called Time and Again.   
      Wynn and I feel this was such an important and valuable meeting.  We learned new information from the researcher himself...and he and Dr. Noonan were so kind.  

      It was a beautiful day in Denver and we were lucky enough to meet our nephew, Josh, for lunch.  A great day all around!  


Tuesday, April 21, 2015

A Quick Knee Update

       It has been four weeks since I was skiing at Solitude in Utah, fell, and injured my right knee.  Getting insurance preauthorization for a brain MRI to check for metastatic disease took a day.  Who knows why, but it took nearly two weeks to secure insurance preauthorization for an MRI of my knee. There's good news and bad news. I always like to give the bad news first...

     I did some real damage.  Per the MRI, I completely tore my medial collateral ligament (MCL), partially tore my anterior cruciate ligament (ACL), have a segond fracture, and contusions on my femur and tibia.  

     The good news:  By the time I saw my orthopedist after the MRI, things had started to calm down and heal.  The swelling and pain had reduced significantly and I was able to bear weight well.  The MCL and segond fracture will heal on their own and I'll probably be able to get by in life with a partially intact ACL.  For now, my orthopedist doesn't think surgery is needed, as long as things continue to move in the right direction...and since I'm not an elite athlete.  He's optimistic that I may be able to rehab myself back to the point of being able to ski again.  I graduated from the crutches by week 3 and next week, will get a smaller brace.  I go to physical therapy twice a week and am slowly on my way to recovery.  

     The key to full recovery?  PATIENCE, PERSISTENCE and CONSISTENCE. I'm pretty sure I can be persistent and consistent, but I'm pretty terrible at being patient.  

(P.S.  Ohhhh...if only I could rehab my way out of stage 4 lung cancer.)