Category Archives: positive attitude and lung cancer

And now for some holiday cheer

…prefaced by some personal crankiness. I wish that the Pilgrims had somehow been given the foresight to realize that celebrating Thanksgiving a scant month prior to Christmas, Hanukkah and other holiday celebrations was ridiculous. Couldn’t there be a mandate to move it back a month or two? I mean, aside from the possibility that cranberries and squash might not be in season, what would be the harm?

We don’t even have a tree yet this year, and I told my husband that if one should magically appear, I wasn’t sure I was up to dragging out the ornaments; I am simply feeling spent. It is not a particularly jolly state of mind.

However, ultimately good cheer is my objective, and the other day I was perusing Inspire (the online support group I participate in) when I came upon a post that really warmed my heart. It was written by my good (online) friend Alta (name not changed), a five foot zero spitfire of Italian/French extraction who is giving lung cancer a run for its money. She gave me her blessing to reprint it, although the names have been changed in order to maintain the privacy of her friends and family. Please enjoy:

“Our house looks festive, the outdoor lights are up and the Christmas tree is decorated. Todd and I did our shopping on line and many of our neighbors brought over some home made cookies. I could not be more content. All I have to do is admire my little Elf’s magic work come to life. My kids did a great job. They put everything together just like I would have. I remember giving this exact gift to them for many, many years. This year and last year it was their turn to give me the Christmas Spirit and God knows I needed the help. Todd asked me to share with you our Christmas story and offered to type it for me. He knows I miss writing to you.

Here goes;
It was in December of 1992; Todd and I had just bought the house we live in now. It was bigger, with more bedrooms and more bathrooms than the one we lived in before. It is a simple large ranch style house with a ½ acre of backyard for the kids to play in. We moved in on December 22 just two days before Christmas Eve. Our youngest child was nine months old and with the moving preparations, I simply did not have time to decorate our new home. I barely had time to buy presents let alone decorate. We did have a beautifully lit real Christmas tree right in the middle of the living room.

On Christmas Eve, I tried my best to create a cheerful setting for the family but by the looks on my five children’s faces, I knew they were home sick. They already missed their friends they left behind.
The walls and windows were bare, the arrival of cardboard boxes and furniture were scattered all over the house. When one of us raised our voices, the echo bounced from one wall to another. The only thing we had in place, were the beds. Todd bought a couple of bundles of firewood to light a fire in the fireplace. With a heavy heart, I searched for my children’s Christmas stockings in the pile of boxes that were by the basement door. I hung the stockings on the mantle thinking that maybe it will help to cheer the kids up.

Jenny was ready for bed right about the same time Todd finished putting the crib together. While I was tucking in the baby, my teenage daughters admired their bathroom. We now had a “girl’s bathroom” and a “boy’s bathroom”. Believe me it is a very, very big deal when you have teenagers of different genders in one family.
Todd planned to take the boys to the grocery store and I asked him to buy three pre-roasted chickens, anything else he thought the kids would want to eat for dinner and a special desert to celebrate Christmas Eve.
I took advantage of the quiet time, sat on one of the moving boxes and had a cup of hot tea. My heart was overjoyed and yet saddened; I knew I was going to miss my old neighborhood. After all, we are creatures of habit aren’t we? I worried about the kids changing schools, leaving their friends behind right in the middle of Winter break. If we had waited to move, we would have lost the opportunity to purchase this house for the price the owners were asking. I sat there taking in a deep breath, (at the time I could do that) and hoped for the best for all of us. I was very tired and wished for some kind of a sign that would reassure me; I was hoping we made the right decision. All I wanted was for my children to feel the Christmas spirit and to appreciate their Blessings.

After dinner, we all sat by the fireplace on the carpeted floor in the family room. Todd and the kids were playing a card game of Uno. They were in their pajamas bopping their heads back and forth humming along with Burl Ives singing “Frosty the Snowman” on the radio. Even the flames in the fireplace danced along with this favorite Christmas tune. Finally, a little bit of the Christmas Spirit came around our family.
As I exhaled a sigh of relief, I heard our doorbell ring. I got up reluctantly mumbling with annoyance, “Who could that be at nine thirty at night?” I was not a happy camper and not in the mood to entertain anyone.
I opened the front door and I was bewildered by what was standing there in front of me. I let out a very loud… “Oh my God!” “Santa! Santa! You came! You came to our house! Thank you! Thank You! Kids! Come quick! Santa’s here! Santa’s here! Todd Honey! Santa Claus is here to see us! Come here quick!”…
Standing in the entry of our house was Santa Claus in a beautiful red and white suit. His belt buckle was golden and shiny. His beard and hair were snow white and real. He put down his big red bag full of presents next to his clean shiny black boots. Santa Claus began to distribute out the gifts; books, dolls, board games and there was even a stuffed animal for the baby. We all stood there staring and paralyzed with stupor. He handed me a box of chocolates and gave Todd a bottle of red wine. For a moment, my three older children were actually wondering if Santa really existed. Of course… I always knew Santa was real.
Todd approached me and with a soft voice and a puzzled look, he asked me when I planned this surprise. He then proceeded to say in a very quiet voice, “Wow, honey, you really pulled that one off.” I looked back at him with big wide eyes and said, “I didn’t plan this. I thought you did”.
I approached Santa and I said, “Oh Santa, thank you for visiting our house. Thank you so much”. I hugged and kissed him on the cheek and whispered in his ear…”Who are you?” He whispered back, “I’m Ed, your next door neighbor. Welcome to the neighborhood.”

Ed was 72 years old at the time. Todd and I took care of him and his wife Betty until they both passed away last year at the ages of 91. We made sure they always had a Thanksgiving dinner and a decorated Christmas tree by their family room window. They had two children who lived in Alaska and no grand children. They were married to each other for 64 years and were left to be alone for many Holidays. Ed will always be our Santa Claus; He made “The Night Before Christmas” a reality. It is when you least expect it that wishes come true. We must always believe and never give up.”

Hear hear!


Let me introduce: Evan

Picture taken of my girlfriend (Anne) and I in Vail. March 2010.

My name is Evan Spirito. I am 24 years old and I have NSCLC driven by a mutation in my ALK gene. I was diagnosed in January of 2009 when I was 21.

The cancer originated in my left lung and, by the time I was diagnosed, it spread to my lymph nodes as well as a couple brain metastases. I had the brain mets “zapped” right away with proton beam radiation and then I started chemotherapy. I experienced good results on the Patel Regimen (Carboplatin/Alimta/Avastin) for 6 cycles and then remained on maintenance chemo for several months following. Unfortunately, my cancer started to come back in the spring of 2010.

The results of my genetic testing came back in the meantime and confirmed that my cancer was driven by the ALK mutation. I was put on the Crizotinib trial and again experienced good results with very little side effects. I stayed on the trial for about a year before my cancer once again showed progression in the spring (March 2011).

I started on the STA9090 trial next, however, it proved to be largely ineffective on my disease with the addition of nearly intolerable side effects. After about a month “wash out” period, I began my latest and current trial (LDK 378).

Linnea and I share the same oncologist (Dr. Shaw). She reached out to me a few weeks ago and we discovered that we had quite similar experiences/treatments in our individual battles with cancer. Linnea was about to start the LDK trial herself and, as far as I know, we are two of only a handful of patients currently on the trial.

I know that the many patients are hoping to join the trial soon and looking for more information on what to expect, so, I wanted to share my experience thus far on the LDK trial:

The trial is comparable to my experience on Crizotinib, which was the best/easiest treatment I’ve had to date. The first couple visits are quite long (as Linnea described in her latest post) but after that it gets better. You will dose once a day and go in once a week for lab work and a check up. I have not seen any noticeable side effects from taking the pill apart from one vomited dose in the first week.

For me, the most annoying part of the trial is the eating requirements. Fasting for 2hrs before and after dosing is no fun but if you work out a consistent schedule it will not be an issue. I tried, and may try again, dosing right when I woke up (before eating), then going back to bed for 2hrs before eating breakfast. If your stomach can manage, it might be worth a try.

In my case, it took a solid 7-10 days before I really began to feel the pill working. Sure enough, my first set of scans revealed a major decrease in my disease, which is very encouraging. Things were going rather smoothly until I suffered a minor set back in the form of a chest infection, but with any luck the antibiotics should take care of that and hopefully I’ll be back on track in another week or so.

While being treated for the infection, Dr. Shaw did notice “slight progression” in my disease; however, not enough to take me off the LDK trial. So, as of right now I will continue with the trial for as long as its continues to keep the cancer down.

I hope this little bit of information helps but I’m also aware that every situation is different. As always, take it one day at a time, focus on what’s important going forward, believe in the treatment and it will work!

Evan is an incredibly brave and strong young man (yes, you can get lung cancer when you are only twenty-one).  As the LDK378 trial is yet so nascent, there is very little in the way of anecdotal informational provided by actual participants.  He was kind enough not only to agree to meet me but to generously share his own experience thus far here. Hopefully it will prove useful to other ALK ‘mutants’ who may be considering the LDK trial.

Thanks Evan!