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.)   


Tuesday, March 31, 2015

100th Blog...A Week of Firsts

     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
couldn't pass it up.  My long-time friend, Vicki, and I made our way to Solitude, a scenic resort nestled in the Big Cottonwood Canyon about 40 minutes from downtown Salt Lake City.  When we got there the mid-mountain snow base was 56", but they hadn't had any new snow for a couple of weeks.  The next morning we awoke to a snowstorm which was expected to bring 4-6" of new snow.  It was beautiful coming down, but it wasn't cold enough so rather than powder, it was heavy slush.

     Although Wynn and I try to get in a week of downhill skiing a year, I've only improved to an intermediate skier.  I feel comfortable describing myself as a strong blue-run skier, when snow conditions are optimal.  I struggled at Solitude in the heavy, wet snow.
     On the second run of our first day, I took a fall.  It was an ordinary fall; nothing really spectacular.  I would tell you the details, but I got hurt and it's painful to relive, so I'm only going to give you the short version.  The snow
Bionic leg
conditions were harder than my ability to ski them and in my wipe-out, I twisted my knee.  Since then, I've had a long series of new experiences: 

  • First time to ride down in a sled pulled by a ski patrol.
  • First time getting evaluated in a slope-side medical clinic.
  • First time in a brace that makes my leg look bionic.
  • First time on crutches.
  • First time riding in a wheelchair at the airport.
  • First time boarding with passengers taking extra time or needing assistance.
      I'm home now and saw my orthopedist yesterday.  He thinks I have an ACL tear, injured or torn MCL, and a fracture of the segond, which is often seen with ACL tears.  I did a number on my poor knee.

     We will know exactly what my injuries are after an MRI, which is scheduled for next week, pending insurance approval.  After that, I'll learn what my options are, but I'm told, likely surgery.  I'll keep you posted. 

My pals, Laurie, Andrea, Vicki, Margie, Stef

Tuesday, March 10, 2015

CT Scans #9, Update and Dr. Paul Kalanithi

     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.  The tech always warns me that, "it will feel like you've wet yourself, but you haven't. It's just the contrast."  They are correct.  It's a weird feeling.  

     Oral contrast uses a barium sulfate suspension to allow more detailed imaging of the stomach and intestinal tract.  My oncologist wants me to have CT scans with an oral contrast every-once-in-a-while to get a better look.  Every-once-in-a-while is good because the prep for this isn't fun.  Two hours before the scan, I had to drink, what felt like, a gallon of thick, white, chalky-ish barium sulfate suspension.  Mine was supposed to be berry-flavored.  In actuality, it was probably the amount of a Starbucks Grande drink.  It was really filling and I had trouble downing it all at one time.  Then, an hour later, I had to try to down another one.  

     My oncologist called me tonight to let me know that my CT scans continue to indicate that my cancer is stable, which means that Xalkori is still working for me.  So for now, I stay the course on my miracle medication. 

On another note...

     My relief today was tempered by the sad news that Dr. Paul Kalanithi passed away yesterday of metastatic lung cancer.  He was a neurosurgeon at Stanford University Medical Center.  He was 37 years old.  He had what I have.  He, too, never smoked.  He was well known among my lung cancer community because last year, a few months after he was diagnosed in 2013, he wrote a poignant NY Times article entitled "How Long Have I Got Left? 

       Each time I learn of another lung cancer patient's death, two thoughts race through my mind.  I am instantly reminded that I, too, will die of lung cancer.  Then I wobble through a wave of survivor's guilt.  Today I wondered why Dr. Kalanithi died less than two years from the time he was diagnosed and I'm still here 27 months later.  My heart breaks for his young wife and infant daughter. I got to live nearly 20 years longer before being strapped with lung cancer.  Dr. Kalanithi did not get to see his daughter grow to adulthood as I have with my children.  I cannot escape the reality of my diagnosis, even though my scans were good today.

Rest in Peace, Dr. Kalanithi. 


Sunday, March 8, 2015

Life Goes On...again



     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. 


Tuesday, February 24, 2015

Cycle for Survival, 2015

     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 disease.  Others, like me, were there because they, themselves, are cancer survivors. There were hundreds of participants riding for research dollars. 

     Being the third year we've participated in this event, there was some sign-up and donation solicitation "fatigue."  It's hard to keep going back to friends and family to ask for more money...again.  But in the end, we pulled our stuff together, showed up, and Team SHEADE raised over $4,800. I raised nearly  $2,900.  Despite the anemic pre-event phase, we ended strong!

     This year, my dear friend, Brigid, rode with Team SHEADE.  Brigid has been with me every step along my cancer journey.  When the flu knocked out three riders for this year's event, Brigid got up early on a Saturday morning and drove to Chicago to help us. 
(Hey Stef...I have our necklace on.)


     In 2013, when I was too sick to ride, Wynn, Nathan and Nina rode for me.  This year, Wynn and I rode together.

     Leslie and Caitlin - riding for the 3rd year!   (Leslie married our nephew, Larry, last year and Caitlin is engaged to Larry's twin, Harold.)

     Two years ago, my brother-in-law, Bob, got us involved with Cycle for Survival.  Here he is with Wynn's sister, Eudice. Both are 3-time C4S veterans.


     Andy is our niece, Jayme's,  husband.  He, too, has ridden in three events.  Although an avid supporter this year, Jayme didn't ride because her baby is due any time now.


     Bob with Larry.  Larry, too, has ridden all three times.


      Friends, Cookie and Brent, with Bob and Eudice.

Signed up to ride but missing from this picture are Becca, Devin and my friend, Kisha.  Becca and Kisha were home nursing bad cold/flu symptoms and Devin was home taking care of little kids.  We know they, along with Nathan, Nina, Bruce, Tracey, Livy, Jake, Harold, and Jori - all previous Team SHEADE riders - were with us in spirit.

     To those who are currently battling cancer:  It was overwhelming to see such large numbers of people sweating like crazy to raise money for cancer research...for us.  I take it very personally.  I speak for all cancer survivors when I say, "Thank you to all participants and donors for helping to give us a fighting chance to live a little longer and a little healthier, despite our disease."

P.S.:  I ran into Becca  - who feels so badly she wasn't able to ride this year.  Here's her quote, "I'm riding next year, for sure.  I don't care if I'm the only one on that bike, I'm riding."  Hey Becca, I'll ride, too!

Sunday, February 15, 2015

My Annual Donation Request

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 share information, working collaboratively to find new treatments.  MSKCC, famously known for their cancer research and care, has contributed to data and information that has benefited all of us with all types of cancer.  This, along with with the family connection I mentioned above, is why I ride to raise funds for MSKCC.

Of course I worry that the people close to me are experiencing "donation request fatigue" because I've been asking for your support for the last two years. In the past, my family and friends have been incredibly generous. So generous that it's hard for me to come back each year to ask for more.  Please understand that I am only able to ask again because I still need more research for treatment options...and I'm still hoping for a cure. I also ask because, as a never-smoker, I know that lung cancer can happen to anyone. It happened to me and it can happen to you. If possible, please consider making a donation. It's a great cause for those of us who are counting on more research to keep us alive a little longer. 

Just click on the link below:

If you can't donate, please know that I understand.  It's not possible to contribute to every donation request that is received.  But...I will make you a deal.  If you donate to my cause, I'll donate to yours.  Just ask me :)

And...thank you.