Monthly Archives: April 2010

Glass slippers: finding one that fits

Spoiler alert:  For those of you who are currently enrolled in the PF-02341066 trial and/or considering enrolling, please do not be discouraged by today’s post.  The trial has been nothing short of miraculous for me and many others.  I have always known that it was, however, not a cure for me, but rather a much needed ‘vacation’ from my cancer.

Monday was the day of my appointments in Boston.  As I got dressed that morning, I contemplated fixing my little V pin to my shirt, in celebration of five years, but somehow it just didn’t feel right.

It’s generally a solo trip, but David came with me this time.  Due to the fact that it was Patriot’s Day, traffic was a breeze, and we got to the hospital with plenty of time to spare for a cup of coffee.  Dr. Shaw was prompt, and as she entered the exam room, I could sense that it wasn’t going to be good news.  Had it been a book that I was reading, I would have marked the page, shut it, and walked away. Maybe later.

Not a book though, but life as I’ve come to know it (quick fact:  as someone who is fifty and was diagnosed with cancer five years ago, I have now spent 10% of my life battling lung cancer).

So, cut to the chase, it is now apparent that my cancer is developing resistance to the PF-02341066.

There is no longer a single area of concern in my upper left lobe, but several, including one in my right lung.  In addition, the pleural effusion which had been stable for five years has gotten slightly larger.  I’ve scanned in a copy of the report:  for those who are curious, if you click on the image you can see it full size. Radiologist’s speak, and it’s a wordy one.  Quite the opposite of the ideal report, which would be short and sweet and use words like ‘unremarkable’.

As I left Alice’s (Dr. Shaw’s) office, I felt like Cinderella at the ball when the clock struck midnight.  I had been living in this fantasy which included a future and I was really getting used to it.  It hit me really, really hard.

However, after approximately 36 hours of feeling sorry for myself, I rallied.  This was due in no small part to the fact that Alice called not once, but twice with updates on potential avenues for treatment.  Once again we are at the very edge of what is available.  I was describing it to Peter as being similar to trying to cross a fast moving stream on a path of stones, and he more aptly envisioned the stones as the backs of turtles: they too are likely in motion.

So, I will stay on 1066 as long as I am able. Hopefully that will be for at least several more cycles. I would then potentially enroll in a trial for a HSP-90 inhibitor (HSP-90 is crucial to several proteins which stimulate growth in cancer cells). Alternately, I might return to a more traditional chemo such as Alimta. Some of the other options we had once talked about, including a wedge resection or radio ablation, are no longer viable, as my BAC appears to be multi-focal once again.

Perhaps most exciting, is a new ALK inhibitor by Ariad that was announced at the AACR meetings.  It is specifically tailored for ALK mutations that have become resistant to PF-1066, and it is reported to be even more potent.   However, it is preclinical:  not even in phase I yet.  One of those swimming turtles.

So, I’m shopping for just the right glass slippers again (or, back in line for another miracle).  And in the meantime, I’ve got to stay positive, be strong, get as much benefit out of each treatment as possible, and just hope that medical science is one step ahead of me.

Wish us all well.

Sum of our parts

My first week in my sixth year post diagnosis was ushered in with a quiet celebratory dinner in Portland, Maine.  And then it was back to the brass tacks of regular life.  Around here that includes (but is not limited to) cooking, walking, doing the laundry, painting, parent/teacher conferences, a little shopping with Jemesii, driving to Boston for scans, car pooling, doctor’s appointments, watching movies, and just being damned happy to wake up each and every morning.

In the course of my garden variety activities this week I made two small discoveries regarding my own particulars.  As part of my annual exam, my height was measured, and I have lost another quarter inch.  Thirty years ago I stood almost five feet eleven inches tall, but now I’m a mere five nine and three quarters.  Coincidently, I also had my feet measured this week;  something that had likely not been done since I was fitted for my last pair of buster browns in the sixties.  My right foot is an entire size larger than my left foot, which accounts for the blister on my left heel (which has been slipping up and down in a shoe a size too large).  Now I just have to find a shoe store that will sell shoes in singles rather than pairs…

My neuropathy in my feet has gotten worse again, and yesterday I stumbled and fell not once, but an astounding three times.  The first time I fell, I was standing on a chair in my studio. A painting caught my fall and snapped in half. Fortunately, it was not one I’ve spent a lot of time on.  I happened to be wearing a felt bowler hat, and when I stumbled, our dog Buddy came rushing over as if this was all some great game.  So there I was, on the ground, two halves of a painting beside me, hat over my eyes, me laughing and Buddy ready to rumble.

Yesterday I asked David, “so, who am I?  Writer, artist, mother, cancer patient?” I was half joking, but I do sometimes feel as if I wear a lot of hats (and not just felt bowlers).  And that is just my vocations, my avocations, or those things I do just for pleasure, surely define me as well.

Perhaps paramount among them is treasure hunting.  I really, really like to look for things, whether it is on the beach, in the dirt or at a thrift store.  I am particularly drawn to that which is worn down in some way;  objects which carry the marks of time and passage.  I have an old vitrine in my studio which is filled with an assortment of found treasure, and that is what I was photographing when I took my misstep.

I don’t know how may of you saw the interactive collage of cancer survivors that the New York Times has on their website, but it is lovely.  The premise was to show life after cancer treatments, and for many of us there is no after cancer.  I posted  a photo, and they’ve included a feature where if you click on an individual photo, you can read comments.  I used this space to stress (once again) that for many of us, we don’t cross a magic threshold and graduate to survivor status, but rather content ourselves with surviving.

And speaking of surviving, Pfizer will be presenting more data from the PF-02341066 trial at the annual AACR (American Association For Cancer Researchers) meeting this weekend. In addition, PF-02341066 now has a name: crizotinib.  I see Dr. Shaw on Monday to review my latest scan results and I’m sure we will talk about the presented results as well.

In the meantime, that garden variety life calls, and next on the list is feeding the neighbor’s cat.

Numbers Game

Today I am celebrating a very special anniversary.  Five years ago, on April 8th, 2005, I was diagnosed with lung cancer.  Statistically speaking, the fact that I’m still at this party is a personal victory.  As many of you know, the overall five year survival statistic for lung cancer is 15%.  On a sober note, that means that out of one hundred people diagnosed with lung cancer at the same time I was, only fifteen are still alive.

The old numbers game, and when you’re talking lung cancer, those numbers are not favorable.

In my case, they have gotten less favorable as time has gone on.  I am looking at a letter dated August 29th, 2005.  It is my oncologist’s (at that time, Dr. Tom Lynch) response to my statistical prognosis and the potential benefit of adjuvant chemotherapy.  This is what he had to say:

“Some statistics will say that the survival is 60% and others 70% (both are without chemo) …I believe that Linnea’s characteristics are more consistent with the better prognostic group…If one looks at older data the benefit [from chemo] is 5%.  However in the most recent CALGB and NCI Canada data that benefit was either 11% or 13%.  Thus if you add 13% (CALGB) to 70% you get 83%…”

So the most positive spin possible put my initial five year survival statistics at 83%.  These somewhat arbitrary and very slippery numbers were arrived at by taking into account my stage, treatment options and other variables such as my non-smoking status, age, sex and relative health.

Roman numeral V and V for victory

The final four factors were all very much in my favor, as was the fact that surgery was possible. Tom had concluded the letter by saying…”Most important is to know that from your perspective the percentages don’t really matter. Cure is an all or nothing phenomena and I remain confident that we have done everything we can to get the best possible outcome for Linnea and that she has a very, very strong chance of cure.”  Well, that cure would prove elusive, and as I learned more, I realized that many of the characteristics of my particular cancer were rather poor prognosticators.

Let me break it down for you.  I was diagnosed with NSCLC, or non small cell lung cancer.  Pathologically I had an adenocarcinoma, with a BAC, or bronchioaveolar, subtype.  BAC can be quite indolent, or slow growing, and survival statistics are often higher (as high as 100% for tumors <3cm).  My stage was IB, with T2 (tumor size >3cm) and N0 (no lymph node involvement) classification. The fact that I was a stage I was highly encouraging, and meant that a surgical cure was possible. However, the size of my tumor, which was 5cm, meant that I was a stage IB, rather than a IA, and statistically speaking, that meant perhaps a 20% decrease in survival.  In addition, my tumor was located in a lower lobe on the left side (a poor prognosticator) and was mucinous (again, a poor prognosticator).

From a treatment perspective, a lower left lobectomy followed by adjuvant chemotherapy with cisplatin and Taxotere would give me a shot at that 83% survival statistic to which my oncologist referred.

However, despite surgery, and adjuvant chemo, my cancer spread (likely due in part to both my mucinous BAC pathology and my yet undiscovered positive ALK mutation status–now both recognized as indicators that traditional platinum based chemos may be ineffective).

So, long (and getting longer) story short, I now have recurrent/advanced/metatastic/terminal lung cancer.  That original 83% has shrunk to a dismal 4% five year survival statistic.  But, against the odds and thanks to an amazing combination of science/luck/persistence, I’m still here.

NED, or No Evidence of Disease, is a coveted designation in cancer.  I was never able to say I was NED.  I would like to propose a new acronym, NDY, or Not Dead Yet.  Take that, cancer!

A nontraditional traditional Easter

Peter and I dropped Buddy at the kennel early Saturday morning. We then decamped for Longmeadow, Massachusetts where we were going to celebrate Easter with my good friends Melinda and Sally and their families.

We arrived mid afternoon, and shortly thereafter the boiling and dyeing of the eggs began.

Despite following Julia Child’s directions to a T, upon accidently cracking one we discovered not hard, but runny yolks. Problematic for eating, but not for tossing at various targets, a short lived but hugely enjoyed discovery by the children.

That evening Melinda prepared a Korean style feast which was oh so yummy. Bedtime was early for all but the Bunny, and on Sunday morning the ‘children’ (ranging in age from seven to twenty one) waited anxiously for the get set, go which announced the start of the days first egg hunt.  Amidst stiff competition, Melinda’s son Christopher won round one. After noting his victory (the first time he’d ever bested his sister Lizzie), baskets were opened, and then it was time for a quick breakfast before changing into our Easter finery.

We were heading to church, which for our family was a stark departure from tradition.  I am, however, open minded (ha, got you there!) and felt it would be an educational experience for Peter to see how lots of other people spend their Sundays.  So there we were, in a house of worship (Catholic, in this case) on Easter morning.  And it was, well, interesting.  There were several places in the sermon where I would have liked to have raised my hand (as well as some objections).  As I was a guest in another’s house, I kept my arms down and my thoughts to myself.  I was, however, happy to return to my secular surroundings the moment the service ended.

We then had a delicious Easter Brunch, and I ordered my first bloody mary ever (and it wasn’t even noon yet).

Yet another spirited egg hunt followed, and this time Peter was victorious.  A few games of whiffle ball and croquet later, and it was time to say cheerio to all and thank you so very much for a lovely time.

Advent of April and those who go the extra mile(s)

We awakened yesterday to a sparkling day; the sun was out and after all that rain, everything seemed shiny bright and scrubbed clean.  One of those days where it is so beautiful it almost hurts.  It was also delightfully warm, and Buddy and I went on not one, but two walks.

Last night I slept with the windows open and for the first time this year, I heard spring peepers.  This morning the lake was shrouded in mist; the surface perfectly still and silvered, so that there was an eerily perfect mirror image of the docks and trees lining the shore.  When I took Buddy for his morning walk, the air was filled with birdsong and all the little strands of spider silk were outlined in mist. I really love life.

The view out my window this morning

I love it so much, that sometimes I forget that I have cancer.  Not in a ‘I’m not thinking about it all the time’ way (which is good and healthy), but rather in such a way that I totally disregard the fact that my life course has been irrevocably altered.  And I start making crazy plans, which, truthfully, are beyond realistic.

And just as no one is going to sell me a life insurance policy (nope, didn’t get one back when I could), there are limitations to what I can realistically expect to achieve.

For instance, there is a wonderful fundraiser coming up on May 2nd sponsored by the Lung Cancer Alliance, Team Lung Love.  It is the brainstorm of Julia Gaynor, and it is a half marathon/marathon in conjunction with the Cox Providence Rhode’s Race in Providence, Rhode Island. I really wanted to join the team and walk the half.  In this particular instance I didn’t feel that I was limited by my lung cancer, but rather by my left ankle which is now home to eleven screws and a plate. Although I’m back to being very active, walking even a couple of miles results in some extra pain and swelling. Regretfully I acknowledged that taking on thirteen might be pushing my luck, so I had to pass.

However, several of my able bodied family members are going to be participating.  First to join Team Lung Love was my amazing sister Laura, who, if her hamstring allows it, will run the marathon. Laura’s a real go getter, as well as an incredibly supportive sister, and so far she’s raised the most money of anyone on the team.  She will be joined by her friend Stacy, who is running in honor of an uncle who lost his life to lung cancer.

A picture of Laura and her three boys in an earlier race

In addition, My sweet husband David and son Peter will be walking the half, and they have almost achieved their fundraising goal as well and are now looking to top it.

So I encourage any of you who are able, to join us in Providence on May 2nd. I will be cheering on my incredible family and the other team members who are going the extra miles to raise awareness and funding in support of lung cancer.  I hope to cover part of that distance with them.