Monthly Archives: December 2011

Greeting from an old friend

Following one of my recent appointments in Boston, I took a stroll along Charles St. to do some stocking stuffer shopping (chocolate, in a wide variety of amazing variations). I popped into a small stationary store, where I purchased the snowman/Kenmore Square postcard in my previous post. There was another greeting card that really grabbed my attention though. Upon spying it, my first thought (just a bit self-indulgent) was that I would really love it if someone sent that card to me.

As I was paying for my two purchases, I said to the salesclerk, “would you like to hear something really terrible?” Mais oui! She loved hearing terrible things. Well, perhaps I’d built it up a bit much, but I told her that I planned to mail the special card to myself. “Oh! I hope you do!” She said. That was all the encouragement I needed.

The next morning I mailed some packages as well as an envelope addressed to myself.

Peter was with me the next day when I fetched our mail from the box. “Oh look”, I said, “a card for me!” As he looked over my shoulder with mild curiosity, I opened my beautiful card. Inside was written, Love, Linnea.

Peter’s response was his typical, “Oh gawd, Mom. You are such a dork”. But then he said, “The next time you need emergency affirmation just let me know.”

That boy’s going to make someone very happy someday. And the card looks lovely on the wall of my closet.

Quick anatomy of a holiday

It was a fine Christmas. And we weren’t without a tree–David brought home a ‘small’ eight footer several days prior. Peter and he were indeed in charge of hanging ornaments, although I couldn’t resist placing a few.

Jem, Jamie, Olive and Kala joined us for a late dinner on Christmas eve, and the girls (dogs) were beautifully dressed in Suessian outfits sewn by our creative daughter. David made a splendid roast, and I baked our traditional coffee cake for breakfast on Christmas morning, using my mother’s time honored recipe.

As Peter is now a mature fourteen, we rose at a leisurely hour;  a pleasant change from the past twenty-five or so collective Christmases. Everyone was pleased with their gifts (electric toothbrushes all around!) and David surprised me with two beautiful silk carpets he’d picked out and had shipped from Mumbai.

Calls were placed and received to and from all the family members not present, and for two days straight we enjoyed not going anywhere.

I now look forward to the New Year and all of the possibilities it will bring.

Jem's virtual fireplace and mini tree

Merry merry.

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!


Big four oh!

I had my second chest CT scan since starting on LDK378 a little over a week ago. The report from the radiologist was basically ‘stable’, But at a scan review with Dr. Shaw, there was clearly visual evidence of further improvement (lessening density of the ground glass opacities). The trial review board at Novartis must think so as well, because several days later Alice emailed to say I was now at the 40% mark, which is the cut off for a partial response. It’s not as clean in there as it was after I started crizotinib (Xalkori), at least not yet. But we’re working on it.

September of 2008/pre-crizotinib

November 2008/post-crizotinib

For comparison, here are the before and after images of my lungs in 2008. The left lung is actually on the right of each individual image. It is smaller than the right lung, because the entire lower lobe was removed in 2005, at the time of my diagnosis. Before I started the PF-03241066 trial (crizotinib, Xalkori), the remaining upper lobe of my left lung was getting pretty filled up with cancer, and you can see some activity starting in the right lung as well; particularly near the top.

August 2011/pre-LDK378

The image above is from a photograph I took of my chest CT scan as displayed on a computer monitor, so it’s not as clear as it could be. I’ve not included the two scans I’ve had since I started the trial, as I’m not certain if I am allowed to do that yet (as a subject now, not a patient, the rules are not the same). I’ve included this image simply to give you an idea of how much cancer had come back. Not as diffuse as in 2008, but well on the way and really rather dense in the bottom of the remaining upper left lobe.

So, what I can’t show you, but can tell you, is that the most recent scan is significantly clearer (and if you are considering percentages, 40% certainly sounds twice as good as the initial 19% resolution). I’m no longer coughing and my lungs feel fine.

This trial is in the dose escalation phase, and I entered at 250 mg. Per protocol, once the subjects at the next higher dose had gone without adverse events for two cycles (a cycle is three weeks long), I would be allowed to go up to that dose, or 500 mg. Last monday was my first day at the stronger dose. I’m hoping stronger=more effective yet.

So all in all I’m feeling well. Occasional bouts of diarrhea would seem to be a side effect, and I’ve become mildly anemic, which leaves me a bit rundown and intolerant to cold (not quite as rosy as I once was either). It would seem to be a mixed etiology of nutritional anemia and anemia of chronic disease, according to my labs (and my oncologist!). My hematocrit is 31.2 (normal reference range 36-46), my hemoglobin is 9.6 (normal reference range 12-16) and my MCV (mean cell volume) is 72 (normal reference range 80-100). My iron level is 18 (normal range 30-160) and ferritin is 6 (normal range 10-200).

In a subsequent post I will  go into greater detail about anemia (I’ve been reading up on it, and it’s rather fascinating).

So that’s the medical update. I’m off to eat some spinach.

Xalkori Launch

We take the stage

Alright Miss Duff. Enough procrastination. Time to write about the Xalkori launch.

From the evening of October 25th through Thursday morning on the 27th, David and I were guests of Pfizer at the Copley Square Marriott in Boston. We were in attendance for the patient portion of the Xalkori launch.

After registering on Tuesday, I located the ballroom where Alice (Dr. Shaw) was scheduled to speak. An interactive display had been installed in the foyer with patient photos and videos, and as I was checking those out I ran into the speaker herself. There was time for a quick hug before she took the stage and I slipped into a seat at the back of the room.

Alice recounted a brief history of the PF-02341066 trial to an audience of about 350 Pfizer employees; the majority of whom were pharmaceutical reps. She was joined onstage by Robert Martensen, an author and physician, who happens to have ALK+ NSLC  and who began taking Xalkori last summer. Of special note, the histology of Dr. Martensen’s lung cancer is squamous, so here is a splendid example of the old exception to the rule theory.

It was interesting to hear the dialogue between two doctors; one of whom was also the patient. At the conclusion of their presentation, we had a ‘practice’ session, and I was able to meet the other ten patients whom I would be joining for our portion of the program the following morning. All of them, (except for myself) were current participants in phases II and III of the crizotinib (Xalkori) trial and had enjoyed positive results that ranged from stable to a whopping 100% response.

On Wednesday morning the eleven of us, plus our caregivers, made a rather dramatic appearance onstage as we lined up behind a white scrim which was then dropped at our feet (the reveal!). After we were individually introduced by the moderators (hello Jonathan and Chris), our families retired to the audience.

It was a moving experience, as each patient took turns describing the impact Xalkori had made on their lives.  I found it rather an amazing vantage point as well; looking out over the sea of faces in the audience, many of whom were wiping away tears.

Each patient was given a chance to answer some prepared questions. When it was my turn, I commented that it wasn’t exactly fair that the moderators were the only ones with teleprompters, given the fact that most of us on stage had done some really hard drugs.  I also asked the audience to take a good look at the eleven hale and hearty individuals (patients) in front of them and to remember that we each had stage IV lung cancer. Given the ravages of the disease as well as the difficult side effects of most traditional treatments, our current state of health was perhaps the most amazing thing of all. Not only had Xalkori given us more time, it was quality time.

After the session concluded, we had the chance to meet some of the people behind the development of crizotinb, including Keith Wilner, Pfizer’s Senior Director of Clinical Research, and then perhaps the biggest rock star of all,  Dr. Jingrong Jean Cui, the scientist who invented crizotinib.

Dr. J. Jean Cui with some of her biggest fans

Jean is the epitome of intelligence, diligence, humility (!) and creativity. She shared with us a tantalizing glimpse of just what lay behind the synthesis of a complex molecule that would become Xalkori.

And this is it: Xalkori

Pfizer thoughtfully arranged a luncheon for the patients and their families, and we were joined by several key members of the team involved in development to market phases of PF-02341066/crizotinib/Xalkori. Possibly not your usual cafeteria chatter.

I had overheard that there would be a tribute to my friend Kevin Brumett, who was one of the very first people in the world to go on what was then know as PF-02341066. Kevin passed away in May of 2009, just a week after marrying his sweetheart, Stephanie Fellingham. With his boundless optimism, energy and generosity, Kevin touched the lives of many. In January of 2009, he had been invited to speak at the Pfizer laboratories in La Jolla, an experience he found profoundly moving. It was only fitting to close the Xalkori launch with a tribute to this exceptionally brave young man who eagerly went down what was then an unproven path.

There was time for a short and much needed break; I felt emotionally tapped out at this point. Then we crowded into buses with the pharmaceutical reps to join in a team building exercise at yet another venue. It was actually a great chance to get to talk to more people, and the product of the exercise was some lovely murals for The Lung Cancer Alliance of Massachusetts.

When finsished, we moved upstairs for dinner, and once again I enjoyed having the chance to converse with members of the crowd. An unsolicited plug for Pfizer here; I was truly impressed by both the sincerity and level of commitment exhibited by their employees. Just a really great group of people.

Just when I thought this day couldn’t be any more meaningful, Dr. Tom Lynch, my original oncologist and now Director of the Yale Cancer Center, walked up to our table. After a few moments to catch up, he took the podium, and knocked the socks off a crowd that on the third and final day of the Xalkori launch, was by all rights exhausted. Tom possesses the uncommon combination of brilliance and a real knack for performance; he is a phenomenal speaker. And his enthusiasm is absolutely infectious. And, of course, I couldn’t help but be pleased that he included the before and after image of my lungs (pre and post crizotinb/Xalkori; nice to see them on the big screen!).

The evening concluded with a moving presentation by Diane Legg and Rich Monopoli, friends and associates of mine as well as co-chairs of the Massachusetts Lung Cancer Alliance. What a day!!

Before I sign off, I would like to say how pleased I was to have people come up and introduce themselves and to say that they read my blog; I am honored. It was also wonderful to be reunited with those I’ve had the pleasure of meeting before; both filming in Meredith and on my trip to the facility in Connecticut. In closing, thank you, Pfizer, for making us feel so welcome and please, keep up all of the good work. You will never know how much it means to our friends, families, and those of us with lung cancer.