Wednesday, November 19, 2014

CT Scans #8, Update

     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 lot of radiation and earlier this year I started wondering if maybe I should try to reduce my exposure.  I spoke to my oncologist and negotiated getting scanned every four months.  (I tried to get him to agree to every six months, but failed.)  So, the last two rounds of CT scans I've had have been spaced out by four months. 

     You would think I'd be happy because I got what I wanted.  (Well, herein lies the rub and why having cancer is so annoying...)  Knowing that Xalkori won't work forever, I'm constantly wondering if NOW is the time that it has stopped.  And...if it has stopped working, shouldn't I know that as soon as possible.  I engage in grueling mental gymnastics trying to figure out if it's better to reduce my radiation exposure or know, sooner, that my cancer is growing again.  

     For now, I've been holding out, reducing my radiation exposure 25% by getting scanned every four months.  I've realized, however, that the longer I'm on Xalkori, the more anxious I become that it has stopped working. I worry that my luck has run out. In my lung cancer community there are those that have been on Xalkori for many years, but there are also those who only got benefits from Xalkori for a couple of months.  I just picked up my 21st month prescription.  The uncertainty of how long Xalkori will work for me puts a damper on my enthusiasm that it is working for me now.   I wish the uncertainty wasn't such a burden.  However...

     ...yesterday I had follow-up CT scans.  My oncologist called today to tell me that everything continues to appear stable, meaning that  Xalkori is still keeping my cancer in check.  Yahoo!



     This past summer I was driving east 
on Dempster Street somewhere in Skokie, (IL).  Stopped in slow traffic, I looked to my right and saw this tree smiling at me.  I was in a rush to meet some people for lunch so I couldn't stop to take a picture of it.  I made a point of driving home the same way and, luckily, was able to find it.  This smiling tree makes me smile and is among the many simple reasons why I think living is fun.  

Please join me in a smile...my scan report is GOOD!


    

     

Sunday, November 9, 2014

Bucket List Item: Spain


     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. 



   
    
     We started our trip in Barcelona, which is a beautiful city on the Mediterranean Sea.  The region of Catalonia is in the midst of a heated and controversial effort to secede from Spain.  On our first day in Barcelona we were treated to a separatists' rally and parade.  


     Along with amazing views of the Mediterranean, the highlights of Barcelona included buildings by the famed architect, Antoni Gaudi, and the Picasso Museum.  Gaudi's works are unique and impressive, especially La Sagrada Familia, (the Holy Family Basilica), and Park Guell. 

Gaudi's La Sagrada Familia
    
    
     La Sagrada Familia, which was started in the 1880's, is still under construction.  It's slated to be completed in 2026, one hundred years after the death of Gaudi.







Inside La Sagrada Familia














Near the entrance to Gaudi's Park Guell






























     


     

     

     These are the smoke stacks for the apartment building, Casa Mila, designed by Gaudi.  It's  widely believed that George Lucas was inspired by these smoke stacks for his Star Wars costumes. (I can see that.)





     Born in Malaga, Spain, Pablo Picasso lived in Barcelona for ten years before moving to Paris in his early 20's.  The Picasso Museum is in the Picasso family's Barcelona house, and a few buildings that are attached to it.  You wouldn't recognize his early works because he was trained as a classical painter.  You would definitely recognize his later works. 

Man in a Hat, by a young Picasso





Seated Man, by Picasso in his later years




 
    Together with his close friend and painting buddy, Georges Braque, Picasso invented cubism.

    





     
     From Barcelona we took the high-speed train to Madrid, which is a large European city rich with art, music, culture, architecture and fashion.  We visited both the Prado and the Reina Sofia Museums.  Both were filled with paintings
Flamenco
from great masters:  Goya, Velasquez, El Greco, Miro, Dali, and Picasso. We toured the Royal Palace and treated ourselves to a night of flamenco dancing. We joined some locals at a pub near our hotel to watch "El Classico", the soccer game between Real Madrid and Barsa, which also turned out to be a great slice of the Spanish culture.
            
           

    
     While in Madrid, we took a day-trip to Toledo, (pronounced TOE-lay-doh), which was an hour bus ride away.  Toledo is the capitol city of a historically
Toledo
important economic and political region in Spain, so it's loaded with riches that Spain acquired from the Americas.  The whole city is an UNESCO World Heritage Site because of its prominence in Europe's past and all the buildings, art, etc., that have been so well preserved.  Prior to King Ferdinand and Queen Isabella kicking Jews and Muslims out of the country in 1492, (the same year Columbus set sail for America and the start of the Inquisition), Toledo was a bustling city where Jews, Muslims and Christians lived side-by-side, as evidenced by the city's architecture.  In the Santa Tome Church there's an incredible commissioned painting by El Greco called The Burial of the Count of Orgaz.  It's a favorite of our brother-in-law, Bob, so we were happy to see it with our own eyes. 


The Cathedral in Sevilla
     Wynn and I went onto Sevilla after the Rick Steves tour ended in Madrid.  What an awesome city.  It's in the northern part of the southern region called Andulacia.  There are three UNESCO World Heritage Sites there:  the Alcazar Palace, the Cathedral, and the General Archive of the Indies.  We visited the Cathedral, walked all around it, but couldn't get psyched up to go inside.  I'm sure it's spectacular, but the days we were in Sevilla were also spectacular, blue sky, sunny and warm.  Wynn and I just couldn't bring ourselves be inside one more church. 
Inside the Alcazar Palace in Sevilla
When visiting the Alcazar Palace, built in the 10th century, one couldn't help but appreciate the craftsmanship, skill and time it took to 
erect and decorate the place.  It's the oldest royal palace still in use in Europe.  The Moorish architecture, the amazing tooled and tiled walls and ceilings, and beautiful gardens and courtyards are definitely worth the effort to go inside.  

     The food throughout our trip was wonderful.  We love the small portions and variety of tastes of tapas.  We ate lots of manchego cheese, gazpacho and paella.  Iberian ham is abundant; very tasty, but very fatty.  We enjoyed new wines and especially like the Riojas.  It worked out well for me to travel in a country where siestas are the
Rioja
norm.  Resting in the afternoon made it possible for me to make it through the late night dinners.  (Sitting down to eat at 8:00-9:00 P.M. is usual there, young children included.)  


     We found the people to be strikingly beautiful, very fashionable, welcoming and willing to try to speak to us in English.  Although Wynn and I both took Spanish in high school, the Spaniards' English is so much better than our Spanish, and we were so appreciative. 

     I hope Xalkori continues to work for me for a very long time.  It's only because of this miracle medication that my illness is kept in check, allowing me to travel with Wynn so we can continue to have shared memories.  I desperately want to get in more trips to new places with Wynn, Nathan, and Nina.   Wynn and I have some ideas for 2015 travel adventures.  Let us know if you'd like to join us :). 

------------------
P.S.  Here are a couple of my favorite Picasso drawings.  He drew these with a single line. 



Tuesday, November 4, 2014

Who Knew: November is Lung Cancer Awareness Month

     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% of women with lung cancer never smoked, (like me.)
  • ...the diagnosis rate is increasing among women,
  • ...and, I have lung cancer.



5-year Survival Rates

         Lung cancer, overall,  17%
                 (Stage 4, the kind I have, 2%)
         Colon cancer, 65%
         Breast cancer, 90%
         Prostate cancer, 99%

      The lack of awareness hurts those of us with this disease.  There are fewer research dollars available to the scientists who are working on new treatments and potential cures.  Public funding and private donations are not nearly as robust as with other, more recognized, cancers.  

     This lack of awareness also hurts those of you who may get lung cancer in the  future.  Heightened awareness in the medical and public health arenas will drive the need for early-stage lung cancer detection through population screening programs.  

     The other factor causing general malaise on the subject, in the general population, is the stigma that those of us with lung cancer are smokers.  Although not often, since I was diagnosed I've been asked several times if I'm a smoker.  Following my, "No, never" response, I usually add something like, "But if I did, I don't think I would deserve this."  

     I've seen a few lung cancer ribbon colors...white, pearl and transparent.  I've read that, initially, the ribbon was transparent, to symbolize that this disease is invisible.  It's the hidden or silent cancer among us.  Over time, the ribbon has taken on a visible color, pearl and white.  

     I know that my family and friends are well aware of lung cancer, now.  If everyone could tell one other person about my story, then perhaps, slowly, the word can get out - and one day, there can be a cure.  


Tuesday, October 14, 2014

Cholesterol Update, and a Clarification


The Cholesterol Update:

     Back in August I posted an optimistic blog entitled, "Reading Between the Lines":

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 value, (which is usually in the mid-200's when on medication and in the 300's when off of medication,) was 162.  But, my liver enzymes were abnormally high.  Crap.  My cholesterol was low because I was knocking out my liver.  So...I'm off atorvastatin.  Crap...again.


and The Clarification:

     My last post had some information that I had misunderstood.  Thank you to my fellow ROS1 cancer ninja friends, Tori and Janet, for correcting my understanding about our medication, Xalkori.  

     Xalkori has not yet been FDA fast-tracked nor approved for ROS1-positive lung cancer.  It is still in clinical trials and is being used "off label" for ROS1 patients based on the available data for a similar mutation called ALK.  The recent New England Journal of Medicine's article presented data for its use with ROS1-positive patients, which is a step toward getting Xalkori approved by the FDA for ROS1-positive lung cancer.  This is really an important article.  With this data, insurance companies will have more trouble denying coverage for it. 

     

 

Saturday, September 27, 2014

New England Journal of Medicine: ROS1 Mutations and Crizotinib (Xalkori) - Phase 1 Data



      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:



Friday, September 26, 2014

I Don't Mean to be Greedy...

     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 "terminal cancer" and here's what I found:  

"A malignancy which is expected to cause the patient’s death in a short period of time—i.e., weeks to several months"
     
     In the beginning, saying I have terminal cancer was accurate.  However, with Xalkori working well for me, I no longer say I have "terminal" cancer.  But then...what do I have?  How is my illness characterized?  Sadly, the words, "There is no cure for me," are still true and I hear myself saying that phrase, occasionally.  
     
     For right now, patients in my situation stay on a targeted or chemo therapy until it stops working.  Then we try another regimen and stay on that for as long as possible.  We go from one regimen to the next.  If we can get several months to a few years out of each regimen, perhaps we can cobble together enough time for researchers to come up with a cure.  Boy...I sure hope researchers are able to keep coming up with new targeted and chemo therapies to keep me alive for while.   
 
     I'm not ungrateful in any way. The cancer researchers who developed Xalkori are the ones who have made it so I don't have to say that I have terminal cancer. They have advanced the field so that stage 4 lung cancer can now be viewed as a chronic illness.  Much like people with diabetes watch their diets, monitor their blood sugars, and inject insulin - while waiting for a cure, I'll take my targeted therapy, will switch to a new therapy when needed, and will continue to wait for a cure. 

     I don't mean to be greedy...but a cure would be really awesome.



  
 
 


Tuesday, September 9, 2014

A Day with Lung Cancer Experts

      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 quickly...aka a "cancer flare." 

     Knowing that one day Xalkori will stop working and that my cancer may grow back quickly has always frightened me.  Having the opportunity to learn what my options will be when that day comes seemed like something I couldn't pass up.  So, this past weekend Wynn and I traveled to Boston to attend the Cancer GRACE's Acquired Resistance Patient Forum for patients with lung cancer due to EGFR, ALK and ROS1 mutations.  

http://cancergrace.org/acquired-resistance-patient-forum-september-6-2014

     For as much as I was looking forward to this conference, the night before I wasn't able to fall asleep.  I was awake worrying that I would sit through a day of lectures and at the end I would be told that there is nothing for me.  That's not what happened... 

ROS1 mutation attendees
     It was an amazing day.  There were about 100 registrants, eight of us with ROS1 mutations.  The speakers were the Who's Who among clinical researchers in the field of lung cancer caused by EFGR, ALK and ROS1 mutations.  I pinched myself as I listened to these lung cancer ROCK STARS.  They told us how acquired resistance happens, what we should do when we experience drug resistance, and how best to transition to a new medication. We learned about the new medications that are now FDA approved and available for us to use next, and about new medications that are expected to be FDA approved in the next couple of months.   They even had a speaker from the FDA who explained to us how medications get approved, how they become "fast tracked" and thus available prior to the completion of a clinical trial because trial participants are doing so well, and why some medications don't come to market because they are found to be unsafe.  (Think thalidomide.)  It's good for cancer patients, who may become desperate for a new medication, to have some understanding of the difficult job the FDA has.  After lunch, we were divided into smaller groups, by mutation, and we met with the experts doing research in those areas.  They told us about their work, clinical trials that are available or coming up soon, and we had the opportunity to ask questions.   

     Here are a couple of things I learned that I'd like to share with other Lung Cancer Ninjas:

1)  The Bonnie Addario Lung Cancer Foundation has partnered with the Norris Comprehensive Cancer Center at USC to study lung cancer in young individuals.  If you were diagnosed at <40 years, please consider participating.
Check out:
https://www.openmednet.org/site/alcmi-goyl
and
http://www.lungcancerfoundation.org/media/press-releases/new-clinical-study-aims-to-investigate-the-genomics-of-young-lung-cancer/

2)  The next Cancer GRACE Patient Forum will be in Chicago on October 26, 2014.  The focus will be Immunotherapy for the treatment of melanoma, lung and kidney cancers.  Check out:

http://www.jotformpro.com/form/42266827790969

      There's one last thing I need to mention.  I met many incredible lung cancer patients, and those that love them:  Tori, Beth, Craig, Carole, Andy, Kris, Nicole, Maria, Bernard.  Their cancer stories were heart-breaking.  Everyone I met, like me, is a non- or never-smoker.  Some of the people I met were diagnosed in their 20's and 30's...one at age 18 years, a freshman in college.  Sh*t....I thought I was young.  The single risk factor we all share?...we have lungs.  I learned that if you have lungs, you can get lung cancer.